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These Gift Ideas For Newly Diagnosed Cancer Patients Will Show How Much You Care

Do you have a friend or family member who is newly diagnosed with cancer?

Chances are you’d like to get them a gift to show you’re thinking of them.

While any thoughtful gift will be welcomed, there are some gifts that are particularly helpful at this time.

The gift ideas listed in this post are from my own experience as a cancer patient and other patients’ experiences. Remembering back to the shock and anxiety surrounding the early days of my cancer diagnosis I wouldn’t have been able to say at that time which gift would have been most useful because I simply didn’t know what lay ahead of me. Now from the other side of the cancer shore, I’m much more clued into the type of gift that I would love to have received at that time.

If you’re looking for the perfect gift to help a friend get through cancer treatment find inspiration in the list that follows.  Each of these gifts will be guaranteed to help your friend or family member feel truly cared for because you took the time to think of a gift that is not just thoughtful but useful and practical.

Gifts To Help Get Through Chemotherapy Sessions

I won’t ever forget my first experience of the chemotherapy infusion room – a cold and sterile environment I was ill-prepared for.  Sarah Dow (@he4dgirl) suggests gifting “big thick long soft bedsocks” which she used during her own chemotherapy sessions along with a soft warm fleece blanket.  Although most chemotherapy units supply patients with blankets, there’s nothing quite as nice as snuggling into a blanket lovingly chosen for you, rather than a hospital issue one.

Continuing with the coziness theme, another great gift idea is loungewear. Pick out some soft sweat pants and tops that will be comfortable to wear. If the patient will be in hospital for surgery then pajamas are another perfect gift idea. Consider whether they may face limitations after surgery, for example after my breast surgery I had great difficulty lifting my arms, so I wore button-down pajamas.

Gifts To Help Pass The Time During Chemotherapy

The length of time for chemotherapy sessions can range from an hour to eight or more hours depending on the chemotherapy regimen.  To pass the time Sarah suggests good headphones.  You might also like to consider purchasing a subscription to Spotify or Audible for something to listen to on those headphones.

Creating A Comfort Box

Sarah Connor (@sacosw) suggests creating a “box of comfort” filling it with “tissues, unscented soap and moisturizer, sucky sweets, tissues and something to read.” Or you could buy a tote bag which you can customize and fill with useful items to carry to treatment sessions such as:

  • A reusable water bottle that will keep drinks cool as it’s important to stay hydrated during chemotherapy.
  • A travel toothbrush, toothpaste, and alcohol-free mouthwash to help get rid of the metallic taste chemotherapy.
  • Wet wipes and hand sanitizer.
  • A squishy stress ball.
  • Puzzle and coloring books.
  • A notepad and pen – a gift Nancy Stordahl (@nancyspoint) would love to have received at the time was “a journal or pretty notebook for writing thoughts, making lists, writing reminders.”

Post Chemotherapy Gift Ideas

Chemotherapy does all sorts of not-so-wonderful things to a body.  From sleep disturbance to hair loss, nausea, aching joints and cracked skin, the effects of the treatment linger on.

Here are some gift ideas to bring comfort and ease to the patient.

  • To help your friend sleep, get them a silk eye mask or pillowcase. Add a lavender pillow spray, although be aware that sometimes scent and strong smells can be off-putting for chemo patients (this goes for scented moisturizer too).
  • Organic lip balms to help soothe chapped lips.
  • Foot rollers and mini massagers to ease aches and pains.
  • Paraben-free/sensitive skin toiletries because chemotherapy can make skin more sensitive.
  • Anti-sickness wrist bands to help with nausea.
  • Healthy snack bars, peppermint candy, and herbal teas (peppermint and ginger are good for nausea).
  • Soft hats and pretty scarves (again choose silk scarves as other material may get hot, itchy, and uncomfortable).
  • Chemotherapy can plunge some women into menopause. Julia (@BCCWW) suggests a chargeable, portable fan and chill pillows. Lisa Holtshousen (@LHoltshousen) is still grateful to her teenage sons who gifted her a ‘pearl’ necklace which she kept in the freezer and put on when hot flashes struck, and a box of “20 beautiful fans (the kind where your wrist does all the work) – enough for every spot in the house for quick access.”

More Gift Ideas

If you are really stuck for ideas, gift cards and subscriptions are always welcome. From meal delivery and uber rides to magazine/TV streaming subscriptions and gift cards to purchase books, audio, and games, there are plenty of options to choose from.

Gifts That Can’t Be Wrapped

Not all gifts can be wrapped up with a pretty bow but they are no less appreciated and often the most remembered.  Sarah Connor recalls such a gift: “One of my neighbors came round once a week, took a load of washing, brought it back clean and folded. I had two small children. That made such a difference. But it’s not something you could wrap up!”

Offer to walk the dog, carpool kids to school, do grocery shopping, drop off some meals. “Cooking is a chore,” says Nancy, especially when the patient is fatigued from treatment. “A warm (or cold) food item is so appreciated by the entire family.”

Give the Gift of Kindness

Finally, don’t underestimate the simple gift of kindness. Cancer can be a lonely and isolating time. A card or note to let your loved one know you are thinking of them can go a long way to helping a person feel less alone.

To quote Allie Moon (@alliemoonUK) “I think predominantly it’s knowing that someone is there for you, to listen and to be present. Other than that anything that provides a wee bit of comfort or joy is gratefully received.”

How to Play an Active Role in Your Myeloma Treatment and Care Decisions

How to Play an Active Role in Your Myeloma Treatment and Care Decisions from Patient Empowerment Network on Vimeo.

How can you actively participate in your myeloma care and treatment decisions? Engaging with your healthcare team is essential and may lead to better overall outcomes. In this program, Dr. Rafael Fonseca provides tips for how best to advocate for yourself or a loved one, as well as tools for making treatment and care decisions.

Dr. Rafael Fonseca is the interim director of Mayo Clinic Cancer Center and serves as the director for Innovation and Transformational Relationships at Mayo Clinic in Arizona. Learn more about Dr. Fonseca here.

See More From Engage Myeloma

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Related Programs:

Myeloma Treatment Decisions: What Should Be Considered?

What Standard Testing Follows a Myeloma Diagnosis?

Which Myeloma Patients Should Consider a Stem Cell Transplant?


Transcript:

Katherine Banwell:    

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to explore how to engage with your healthcare team when diagnosed with myeloma, and we’ll discuss the patient’s role in care decisions. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Let’s meet our guest today. Joining me is Dr. Rafael Fonseca. Dr. Fonseca, welcome, and would you please introduce yourself?

Dr. Rafael Fonseca:   

Yes, of course. Happy to do that. Thank you very much, Katherine.  

I am a hematologist/oncologist, but I specialize in the area of multiple myeloma. I work at the Mayo Clinic in Arizona. I currently serve also as interim executive director for the Mayo Clinic Cancer Center that is at large across the Mayo Clinic enterprise. But at heart, I’m a myeloma doctor and I love to take care of myeloma patients. I devote my research and the rest of my academic activities to the field of myeloma.

Katherine:                  

Excellent. Thank you so much for joining us today. Let’s start with a question that’s on the mind of many of our audience members. We’re hearing that the COVID-19 vaccine is safe, but how effective is it for myeloma patients?

Dr. Fonseca:               

Thank you. I think that’s a fundamental question. It’s hard to know precisely how to gauge effectiveness when it comes to vaccination because historically, we know that is done by measuring antibodies and there’s a number of publications that are addressing this.

The concern has been two-fold. One is that because the disease itself is something that starts from the person’s immune cells become cancerous, that perhaps that would prevent them from having a very good response. Number two, and perhaps more importantly, will the treatments that are used for myeloma, etc. or lymphoma, can they interfere with our ability to mount an effective immune response? I think the response is mixed right now. I think I tell all my patients the upside is much better than the downside. I think we have a good record now of the safety of this product. I encourage everyone to get their vaccination.

I think it’s important to discuss this with your healthcare provider because sometimes people say, “Should I stop a little bit so that I can get a better response?” While it’s theoretically possible, we don’t want people to stop treatment if they don’t have to do that. Just my very last quick comment, the good news is that the community transmission is clearly going down as more and more people have participated in the vaccination.

We have more people who now have participated in this level of immunity that we have in the community. Hopefully, for patients as well as for their families, the risk of contracting this will continue to decrease.

Katherine:                  

Yeah. We can only hope. Well, let’s learn a little bit more about the disease itself. Dr. Fonseca, to level set with our audience, can you help us understand myeloma?

Dr. Fonseca:               

I’m happy to do so. Multiple myeloma is a cancer form of the bone marrow that arises when the cells that under normal circumstances protect us by the formation of antibodies. These are called the plasma cells. They become malignant. Myeloma is the last stage of a process where a plasma cell can go through a benign tumor or benign phase, if you may, something we call the monoclonal gammopathy, which by the way is quite common. About two percent of people over the age of 50 have this abnormality. Think of it like the colon polyp, a precursor condition.

There’s an intermediate stage that we call smoldering multiple myeloma, which is just more growth, but not quite at the level that it creates problems for the individual.

Then lastly, what we just simply call multiple myeloma, and that is when the growth of those cells becomes of such magnitude that a person starts having problems or starts having symptoms related to that. These cells live predominantly inside the bones in the space we call the bone marrow. They can do a number of things that actually lead to the symptoms and to the clinical presentation. As they grow in the bone marrow, they take some of that real estate.

A person may experience fatigue and that is because they have anemia.

The myeloma cells are also very characteristic because they can erode into the structure of bones, so destruction of bone is another feature that we see in patients with myeloma. That can be either seen on x-rays or sometimes people will present with symptoms related to bone pain or discomfort with movement or weight bearing. Those are signs that we look for.

Lastly, the myeloma cells product proteins and some of the fragments of those proteins can be damaging to the kidneys. Occasionally, people will present with decreased kidney function and sometimes outright failure of the kidneys. Those are the common presentations. It is a disease that mostly affects people in their 70s. It is not something that you can detect through routine testing; it’s just indirectly we start seeing abnormalities and then we do the right testing. If anyone is hearing this, of course, they need to have a detailed discussion with their own provider.

Katherine:                  

Of course, yeah. When a person is diagnosed with myeloma, they usually have a whole healthcare team. Who is typically on that team?

Dr. Fonseca:               

Absolutely. Let me start by saying the key to the successful management of myeloma is to have a well-organized team. It’s a disease that requires an integrated approach that usually brings around the patient a physician.

As part of my team, we also have advanced practice providers. We work with nurse practitioners that help us do the longitudinal care of patients. We have the nursing team. Every time I meet a new patient, I make it a point to bring my nursing team into the room so they can put a name and a face together, as patients will be interacting, of course, with a nursing team through the portal and the various visits. We have a team that is in charge of the chemotherapy administration. That is usually a separate a nursing team that is in charge of the administration of the medications. But we really don’t stop there.

We have pharmacists who help us review the medications for our patients. Very importantly, we have social workers that help us address psychosocial needs, as well as some of the practicalities that become inevitable when one deals with a serious diagnosis like multiple myeloma.

Katherine:                  

Yeah. Lately, we’ve been hearing this term, “shared decision making,” which basically means that patients and clinicians collaborate to make healthcare decisions, and it can help patients to take a more active role in their care.

I’d like to get your thoughts, Dr. Fonseca, on how best to make this process work.

Dr. Fonseca:               

We are very fortunate to live in this time of medicine, where ultimately, we recognize that the patient is the person expert. It is the patient decisions that should drive what is to be done in a situation. Whenever I interact with patients, I tell them, “Listen, I’m going to be like your counselor. I will provide you with options of what I think is reasonable. I will go to different degrees of effort in trying to convince you one way or another for a particular intervention. But at the end of the day, I only do a good job if I present you with the options and the pros and cons of those various approaches.”

I weave that into my language on every single conversation we have with patients. I think we’re way past the time where a physician would come and say, “This is what you’re going to do,” or “This is what will happen.” My language always includes, “I would recommend this.”

“I think the next best step for you to consider would be X, Y, or Z.” But ultimately, I look at patients and not infrequently at the person next to them, a family member or a close friend, and I say, “You’re the boss and with the person next to you providing additional support, comment, and guidance, we can together reach the best decision of what should proceed.” I think we’re incredibly fortunate because patients have access to sophisticated information, especially patients that have serious conditions such as would be cancer and, in my case, myeloma.

As an example, when I work with general internal medicine residents that work with me learning about hematology, I sometimes tell them, “You’re gonna walk into a room. Are you gonna be seeing what I say, this is like a tennis match between professionals. Are you gonna see the level of questions that patients are going to be asking me? They’re going to be asking me about the latest study that was presented at this meeting and the P value and this and that.”

“I can guarantee you that you would not have the tools to be able to address all those questions, simply because there’s such an in-depth understanding of the disease.” I realize this is not everyone. I’m giving you an extreme example. There are individuals that need additional support, more resources. But just to interact with someone who has such commitment to understand their disease and to help us by that understanding make the right decision makes my job so much more rewarding.

Katherine:                  

What do you think is the role of a patient then in their care?

Dr. Fonseca:               

I think it needs to be … I’m describing in some detail and there’s a lot to unpack there. Of course, patients are dealing with a very serious diagnosis. It’s okay to have periods where they are in a pause moment and they’re reflecting of what their facing, and that they can gather information from close family members.

I think we, as providers and the medical team, need to deliver a message that provides clear options for them as far as what the best next phase of their treatment or their management might be, including observations or supportive care. But the patient ultimately is a person who has to make that decision. I frequently get the question, and this is not surprising, and it happens all the time. A patient tells me, “What would you do if this was a family member?” I always tell them, “I always talk to you as if you were my family member, as if you were my brother, my mother, my father.

So, I try to live deeply to that fiduciary responsibility I have to your well-being. I recognize that there are circumstances, and that’s part of the finesse and the art of medicine, that I have to help a little bit more walk you through that step. Sometimes, it’s just human that one may want to say, I just want to disconnect. Maybe I’m not the person that wants to go and read in detail. But perhaps I have my daughter or my son who are helping me and understand better where things are.”

I think one of the key aspects of my role is to make sure that I have a sense that the person has a good understanding to be able to make an informed decision. At the end of it all, if the person decides to proceed in such way that doesn’t necessarily align with what I’m trying to do, I’m deeply respectful of that choice. I will go to extra lengths. So, if someone is foregoing treatment, when I know their treatment has a high likelihood of improving their quality of life, relieve a symptom, or improve survival, I don’t think I would do a good job if I don’t present why that’s so important. But ultimately, it is the patient’s decision.

Katherine:                  

Related to what you’ve just been speaking about, we have a question from the audience. This one is from Sarah. Her question is, “What advice do you have for caregivers? How can I be supportive during appointments?”

Dr. Fonseca:               

That’s a great question.

I have experienced this both as a physician, as well as a caregiver myself to someone who has had a cancer. I think I’m gonna say that there are several roles that caregivers play. Some of them are obvious and I’m gonna call them practical or perhaps even pedestrian, you know, organizing the activities of every day. That’s important, but a lot of people can do that. The second role is to be in assistance for the knowledge that is needed for some of this decision making. Sometimes patients can be overwhelmed, and we need some support and some vetting and peer process from a trusted and loved person so you can go through that.

That is very helpful, but what is essential, and the number one thing is you are first and foremost the loving family member or friend of that individual who is living through a very profound human experience. I think the first role of a caregiver has to be to express that role.

I, myself, reflect on moments where perhaps in a quick, reactive way I wanted to solve some of the immediate practicalities and what was needed most was a direct support. Even if I face a situation today, if I was, again, a caregiver for someone with a serious diagnosis with cancer, I would start with that priority. Number one, you are the support and the loving person. Number two is I will try to provide information. And number three, hopefully you can help with meals and the driving and what have you. But there’s many more people who can come and help in that regard. Not a lot can do the first part.

Katherine:                  

Right, absolutely. Yeah, those are excellent points. Let’s talk about treatment goals. What are the goals of myeloma treatment from a clinical perspective?

Dr. Fonseca:               

I’ve been very fortunate, also, to live through this era when we have seen a plethora of studies and new drugs being approved for the treatment of myeloma.

When I first started, I used to say no one wanted to do myeloma because we didn’t have good treatments. People wanted to study leukemia, lymphoma. It just turns out that this is probably one of the most vibrant areas of hematology from a science and from a clinical research perspective, of course. If I see young patients who have multiple myeloma, I have essentially two goals. The first one is to induce the deepest possible response I can do so in a safe manner. I also repeat, “in a safe manner.” But I really have the goal to try to induce the deepest response possible because that has translated and continues to translate, and in many ways proven to be associated with an improvement on their longevity and the time we can control the disease.

And it leads me to second goal, and that is that I firmly believe there is a subset of myeloma patients that are cured from their disease.

Now, this is possible because of the availability of these new treatments. I will only be able to say that in 10 and 15 years from now, when we have monitored patients for a long period of time, and we have been able to see that became true. But by all indicators, we have patients that are living many, many years without the disease coming back. I think that would be important. Now, we have patients that with more advanced age sometimes it’s difficult to propose some of the most intense form of treatments like stem-cell transplants.

We don’t do a lot of that in individuals over the age of 72 just because the toll that it takes on a person is very high, and the risks become higher. But still, in that population, providing the best treatment possible becomes a goal because I think more and more, we’re seeing patients in that age category that can start to get close to what normal life expectancy would be. It’s not there. It’s not perfect, but you start to get close. Lastly, if someone asked me, I have that balance between quantity and quality, the good news in myeloma, if you do it right, quantity and quality go hand in hand.

So, effective treatment provides symptom relief and provides durability of responses.

Katherine:                  

That’s excellent. What other factors do you consider when determining a treatment approach?

Dr. Fonseca:               

The human experience that comes to the bedside as we consider treatments is so multi-factorial and multi-complex that all that needs to be brought into consideration. Whenever I walk into the room, I tell residents usually the medical part can be resolved pretty quick, but we’re reading how much we can communicate? What’s the level of understanding? What do I understand about the support system for this person? Is there someone who can drive to the treatment center? Is there someone perhaps whose other medical conditions would create certain challenges in how they’re gonna be treated?

This person is telling me they do daily hikes for four miles. Well, that’s different from someone who I see comes into the clinic and has to use a cane. We try to integrate all of that information to make the right decisions. I’ve made a lot of my career in the early years working and showing how, for instance, genetic factors are important. I’ve come to realize later in my career and through some of the very elegant work that other colleagues have done, that these factors are just as important in determining the ultimate outcome of patients. Whenever I talk about that clinical experience, there’s two things I always tell the residents.

I use the residents a lot because I think it’s a good example of how we aspire to interact with patients. Number one is every single encounter is a final exam. You have to put your best foot forward. Every single encounter should be considered a final exam. Number two is when I walk into that room, there are three things I do, particularly the first time I meet a person.

Number one is connect, right? We cannot have a conversation and I’m not gonna be able to move forward unless we have a human connection and I have gained the trust of the patient and the family members that are there. That’s number one. The second point is decide. That is usually okay, we’re gonna do this treatment or that. That is a small part. Most of the time for me, that’s a very small fraction of the time and of the mental energy that I consume. There’s cases that are more complicated, but most of the time it’s pretty straightforward. So, it’s connect, decide do very small, and then on the other end is explain.

So, that’s how I can connect. I propose we do this, and then why we are gonna do it and what can you expect. If you can do those three things, I think that goes a long way in establishing a fruitful and a productive relationship with a patient and their families.

Katherine:                  

I would suspect that you also take into consideration the patient’s health, their age, maybe test results, side effects, things like that?   

Dr. Fonseca:               

Of course. So, we look at the medical record and with the advent, of course, of the electronic record and all the tests that we do, our consideration is quite complex. We have to look at all those factors, and the age, and comorbidities. It’s rare that we would take one factor alone that would trump everything else. We usually have to integrate the information. The same is true when we manage myeloma patients and we’re monitoring their protein levels and their response to treatment. I tell patients, they ask me, “What would you do? What’s the magic number for this or that?”

I say, “It’s a little bit like you’re flying a Cessna plane and you have all these dials in your dashboard, and that’s how we manage the situation is the integration of all of that information.”

Katherine:                  

Right. Can you help us understand, Dr. Fonseca, how test results may affect treatment options?

Dr. Fonseca:               

Sure. Happy to do that. In myeloma, we are very fortunate in that we have, and it’s not the topic for today, but we have the best biomarker that exists for any cancer. That is that we can measure the proteins that are associated with the growth of the cells. We have multiple tests that we can do. We do them in the blood and we do them in the urine. They’re simple tests that have been done for decades now that allow us to monitor how a person is doing with regards to their disease. I use the following analogy. Myeloma cells live inside the bones, as I mentioned, in the bone marrow.

They don’t come out into the blood. So, we cannot measure them. Indirectly, we can measure how many they are and how they are behaving by measuring this protein. I use an analogy of imagine you’re walking in a street, and you see smoke coming out of a building. There are two things you can do. First is you diagnose that there is a fire inside the building, right? We see that with myeloma by measuring these abnormal proteins.

Then as a firefighting team comes on, you can gauge whether they’re making progress or not by the amount of smoke that comes out. That’s exactly what we do when we monitor myeloma. We monitor the M-Spike, the serum free light chain, the urinary proteins. That’s how we make those determinations.

At the same time, we do that, we have to look indirectly at the rest of the body. We have to look at the kidney function. We have to look at the blood counts. We have to look at the hemoglobin and the red cell count because that can (A) start on the wrong foot because of the myeloma itself, but (B) can also suffer as a consequence of our treatment.

It is, again, that idea of having the multiple dials in the dashboard that allow us to reach our practice. We have to be adjusting. So, if we measure the proteins and we’re doing great, but then at the same time we see we’re suffering in blood counts, and we may need to adjust those as we provide supportive treatment. If we don’t see the proteins go down, then that may mean we need to change to a different form of treatment or that the person is unfortunately a refractory or relapsing to something.

So, that’s how we integrate the test results into our management.

Katherine:                  

What sort of questions should patients consider asking about their treatment plan?

Dr. Fonseca:               

I think it’s important that patients understand a few things. They can be described in multiple ways. Number one is, of course, what? What is it that is being used? I think that includes a description of what to expect, the practicalities, the names of the medications, their side effect profile, and what to report when you use those medicines. I think that’s very important because if you’re empowered with that information, you’re gonna be better off as you react for symptoms that may come along. I always tell patients when you have a cancer diagnosis, your self-awareness goes through the roof because we’re gonna be paying attention to everything, every skin change, every pain we have.

So, I think having a bit of that proactive discussion becomes important as they think about the treatments that they want. I think the how-to on the practicalities are very important. The best where the nursing team and the pharmacists help us a lot too. Do you take the medicines at night? Do you take them with meals? Is there something that you shouldn’t be mixing? How much time would it take for me to get a refill? It’s different to get a medication from a specialty pharmacy versus your down-the-street Walgreens. So, all of those things are important that patients, again, participate in the understanding.

If not them, at least the caregivers that are a part of this team. I think it’s important that patients ask also some brief descriptions of (A) the biology of the disease. If I have myeloma, what type of myeloma do I have? Does that matter as far as what treatments I’m going to be using? What treatment options may be available to me because of my specific subtype? We have subsets of myeloma that have options that are not available to others.

Also, I think it’s important that patients also ask a sense from the physicians as to where they are. I’d like to describe this a little bit more. Sometimes, patients ask us specific questions about, am I in a complete response? Am I in a very good partial response? What is a PFS? Those terms work very well when we talk about clinical trials, but they don’t necessarily describe in a great way the situation for an individual patient. I’d use a lot more objectives than I’d use technical terms when I describe where patients are. I say, “You have an excellent response. You have a very deep response.”

Then I’d provide more details if they want. “Yes, you’re MRD-negative at 10 to the -6.” But sometimes I find that it’s harder for patients to understand where they are if they completely focus on the staging system or the response criteria, etc. Because maybe a VGPR, a very good partial response, doesn’t sound very good.

But then you can be in a very good partial response for 15 years and it doesn’t matter. You my want to be in an MRD-negative status, but you still have a good outcome. That’s why the general description of the status by a physician becomes important.

Katherine:                  

Do you think patients should get a second opinion consult with a specialist?

Dr. Fonseca:               

In general, my answer is going to be yes. This is not self-serving. I think myeloma has become so complex that trying to integrate at least once, or if not, in some infrequent basis, an opinion of a myeloma specialist becomes important. This is no one’s fault. If you’re a community oncologist somewhere where myeloma represents only a small fraction of your practice, I can guarantee you, you cannot stay on top of the literature. I cannot stay up with everything that goes on with myeloma, even though that’s what I do 100% of the time.

I get an email every week with all the articles, all the publications, and I have to integrate that. I have to think, okay, does this matter or not? I go to the professional meetings. I see all the abstracts and I still feel like I’m missing out. How could you do that if that is only a small fraction of your practice? I’m sure that the same applies for other cancers, breast and colon. You can’t move. You cannot uproot yourself and leave your community and your family, but I think there should be ways by which patients at least have an opinion from someone who has more expertise. Fortunately, there are many centers across the nation now that have that expertise for the management of myeloma.

Katherine:                  

Dr. Fonseca, we have a question from a newly diagnosed myeloma patient. Barbara says, “I am just about to begin my first myeloma treatment. What can I expect?”

Dr. Fonseca:

Thank you, Barbara, for the question. I think if you start on treatment, first of all I hope they already went through a good description of what the treatments are, the frequency by which you’re gonna have to go to the center, and also what are the toxicities to look out for.

One of the most common toxicities that we face and one of the most challenging parts of initial treatment is the use of steroids. So, we use dexamethasone as part of every single regimen we use for myeloma. I tell patients, “Dexamethasone is a simple drug at first glance, but it’s oftentimes the most complicated part of treatment.”

The human brain works at triple speed when you’re on dexamethasone. So, it’s hard to sometimes be able to sleep properly. People can become anxious and even the sweetest person in the world can become a little bit edgy on dexamethasone.

I always say Mother Teresa on dexamethasone would be an edgy person. Just be patient. Work with the team. Just know that on the other side of treatment there is a return to normal life.

Our goal as we embark on treatments and, for instance, is I see patients that are going to go through transplant, I tell them, “Our goal is you finish, you recover, and you go back to your life. You back to work. You go back to your family, your kids, your sports.” That’s really what we strive for when we treat patients with myeloma.  

Katherine:                  

Yeah. Once on therapy, how is the disease monitored and how do you know if the treatment is working?

Dr. Fonseca:               

Well, fortunately, we use the same markers. Once a person is in therapy, we will be monitoring. We monitor at least on a monthly basis of those myeloma protein markers. Once a person reaches a great level of response, sometimes we complement that with an analysis of the bone marrow. Of course, it’s more invasive, so we don’t like to do a lot of them, but we do them as needed. As we go forward and monitor patients, we will be looking for signs that those proteins remain in a low level as stable as an indicator that the disease is under control.

Now, if I saw someone and then I start seeing that there’s an increased concentration of those proteins or we see something else clinical, we might need to do a little bit of a regrouping and test again in great detail to determine if the person is experiencing regrowth and the disease is so-called relapsed.           

Katherine:                  

Why is it so important for patients to speak up when it comes to symptoms or treatment side effects?

Dr. Fonseca:               

Well, that’s a great question. If you don’t speak about them, we don’t know about them. It seems very obvious, but then we cannot make the proper adjustments. I’ll give you a couple of examples. I already talked about dexamethasone, but a common drug we use is something called bortezomib. Bortezomib is a proteasome inhibitor.

That’s a mouthful, but it’s one of the key type of drugs we use. It’s given as an injection under the skin. Not to be confused, by the way, with daratumumab. Faspro is the name of that medication, so not to be confused with that is bortezomib, which we have been using for many years.

Bortezomib has a potential toxicity that is called peripheral neuropathy. If patients have peripheral neuropathy, that can go from very mild where you have some numbness and tingling, to the more extreme cases that it’s associated with pain, discomfort, even weakness and disability.

Well, if we don’t know that’s happening, then we can’t react to it and we can’t adjust doses or switch to something different altogether. You can imagine now we have more options, but in the old days, I always tell patients, “You might be tempted not to say anything about this because you might be thinking, boy, this is working. I don’t want to interfere with my treatment. I can live with the peripheral neuropathy.” But if it gets worse, despite the fact that the treatment is working, the person might have a very significant impingement on their quality of life.

More so now that we have so many alternatives, it’s important not to get us into a path that we might reach a point of an irreversible chronic complication from treatment.

Katherine:                  

No, and that would be awful.

Dr. Fonseca:               

Absolutely.

Katherine:                  

Before we end the program, Dr. Fonseca, have there been any recent developments in myeloma treatment in research that make you hopeful? 

Dr. Fonseca:               

Absolutely. I would say that the one area of work that makes me most hopeful is what we’re seeing with immunotherapy. We have seen that both as the ASH meeting, as well as the ASCO meeting in this year, where people are presenting updates with the various clinical trials with either bi-specific antibodies or CAR T cell therapy as a new avenue for the treatment of myeloma.

In fact, at the last ASH meeting, we had 14 presentations of different compounds or different constructs that are active. I think the future is bright in that regard. We’re seeing their application right now. A lot of these updates have also been made as ASCO.

We’re seeing the update of the treatment of treatments with fairly advanced and aggressive disease where we can still show very significant responses. I participate in some of these trials. I can tell you in my institution, using some of the bi-specifics, I see patients who have previously exhausted all of their options and now are MRD negative at 10 to the -6.

If we’re seeing that in the very advanced disease, I cannot wait to see what happens when we start using these treatments in either early relapse and why not in the near future as frontline part of our therapy? I think to me, that whole field of T-cell engagers, where there’s bi-specifics or the CAR T cells remains one of the most exciting areas for future research.

Katherine:                  

How can patients stay up to date on information like this?

Dr. Fonseca:               

I think what we alluded to before is very important to work with groups like yours and other patient support organizations that can keep them up to date. I think they’re doing a very good job at also providing updates post some of the large meetings. I know there’s a lot of patients out there that are very sophisticated that will even join the medical meetings. That happens with some frequency; that they want to learn, and patients that go and ask me details about the statistics of the trial. That’s a whole spectrum, right?

But at the minimum, I would say a strong connection with a support group, or a patient support organization becomes an imperative as you deal with this. Also, that would help you because with this whole concept of the information not always being complete and truthful, that can be scary as well, too.

If someone goes and just looks for, I would say even some of the resources that are out there in a textbook today, just keep in mind that textbook was probably written five years ago, and it represents the studies of about 10 or 15 years ago. How that relates to you, it’s very distant. So, it is because of this continuous process of research that we know better what’s going on at the present time.

Katherine:                  

Dr. Fonseca, thank you so much for taking the time to join us today.

Dr. Fonseca:               

Oh, it’s my pleasure. Thank you for the opportunity.

Katherine:                  

And thank you to all of our partners. To learn more about myeloma, and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us.

How Stress Can Play a Role at the Time of a Cancer Diagnosis

How Stress Can Play a Role at the Time of a Cancer Diagnosis from Patient Empowerment Network on Vimeo.

MPN Network Managers Jeff and Summer share how they’ve overcome and continue to overcome the stresses that follow a cancer diagnosis. 

Although, surprised at the time of her diagnosis Summer remained positive. As a care partner at the time of diagnosis, Jeff was fearful because he knew very little about myelofibrosis. To counteract this stress, he armored hisself with knowledge from various resources. Both Jeff and Summer use their hobbies as an outlet whether it’s nature photography or teaching improv classes to further relieve stress. 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657. 

The Best Medical Alert Systems

Editor’s Note: This guide was originally published by AssistedLiving.org here.


Cancer in the elderly presents a great challenge. Their already vulnerable bodies become weaker as therapy wears them down, and they might even face dangers in their own home. They could fall or be too weak to react to call for help, so seniors and their families use senior care facilities, caregivers, adult centers, or other options to ensure their loved ones’ safety.

A medical alert system is one option. It is a valuable life-saving device and can protect seniors in emergencies, providing peace of mind for caregivers and loved ones.

To help buyers sift through their options, we’ve created this guide that compares 10 top providers based on the quality of their service, equipment options, cost, and overall value.


Medical alert systems are valuable life-saving devices. They can protect seniors in case of emergency while providing untold peace of mind for caregivers and loved ones. In studies, nine out of 10 subscribers reported that their medical alert system helped them maintain their independence.

Personal emergency response systems are often used for fall detection, but they can also provide a lifeline in case of medical emergencies related to diabetes, heart attack or stroke. Additionally, they can be activated in case of a fire or burglary. Medical monitoring companies can even help during unforeseen everyday situations as one subscriber discovered when she couldn’t get out of the tub.

Today, smartphones and voice-activated devices have created some alternatives for seniors who may need to contact a neighbor or relative in case of an emergency, but professionally monitored systems still have their benefits. No other system provides a direct link to trained operators or emergency contacts along with advanced features like GPS tracking.

Telephone-based monitoring companies emerged in the 1970s, and many providers have been providing services continuously since then. There are also some newcomers that focus on innovative algorithm-based technology and transparent pricing. In fact, more than 260 medical monitoring services are registered with the Better Business Bureau.

Helping Buyers Narrow Down Their Options

To help consumers sift through their options, we’ve created this guide that compares 10 of the top providers based on the quality of their service, equipment options, cost, and overall value. Each company was evaluated, ranked, and given a star rating, and the companies’ profiles give you a detailed look at the company’s ranking and offerings to help you see how these products might fit into your life. We’ve also created a consumer guide that outlines some of the most important purchasing considerations. Finally, we’ve answered some common questions to help you make an informed decision if you decide that a medical alert system is right for you.

How We Chose the Best Medical Alert Systems

One of the challenges of selecting the best medical alert companies is that, particularly on the surface, many of the deals appear similar. To get past this confusion, we identified several traits that the top providers share.

Monitoring Plans

Nearly all companies offer customers the choice of landline or cellular service for in-home monitoring as well as mobile devices equipped with GPS location tracking. Across the industry, it was common to see surcharges for fall detection, wellness calls and other premium features. If you’re interested in these services, be sure to add $5-$10 to the monthly fee per item when comparing plans.

Response Times

Comparing response times is one of the most effective ways to evaluate service quality. Some providers answered help calls in less than 20 seconds while others took as long as seven minutes. When determining service quality, we looked for companies with multiple U.S.-based call centers and professional operators who have received specialized training.

Reviews and Qualifications

Subscriber satisfaction is another important consideration. We cut one provider from our list because customers had trouble getting their money back after trying the service. Industry certifications from organizations such as Underwriters Laboratories and The Monitoring Association also gave us insight into the provider’s service quality.

Equipment Features

While many providers use nearly identical base units and pendants, we noticed some differences in the product’s battery life and signal range. We also considered the system’s audio quality, weight and appearance while giving preference to devices that were easy to use and maintain.

Ethics

Deceptive pricing schemes and hidden charges booted several companies off our list of contenders. Nearly all of our top picks have monthly service agreements with no long-term commitment, and many offer a 30-day money-back guarantee that gives customers an opportunity to try the service.

In addition to using the above criteria to select the top medical alert companies, we ranked the top twenty providers based on thirty different factors. Each company was awarded a star rating based on this analysis. For more information on our ranking process and the metrics used, read “A Full Explanation of Our Ranking Methodology.”

The 10 Best Medical Alert Companies

COMPANY BASE COST STARTING COSTS PLANS FEATURES STAR RATING
MobileHelp $19.95 — $44.95 $49.95 One-Time Fee +$15 Shipping with Month-to-Month Payment Landline, Cellular, Bundle Fall Detection GPS Location Tracking 5.0/5
LifeFone $24.95 — $39.95 None Landline, Cellular, Bundle Fall Detection Medication Reminders Wellness Calls Caregiver Apps 4.6/5
Bay Alarm Medical $19.95 — $29.95 $99 device fee for mobile +$9.95 Shipping Landline, Cellular, Bundle Fall Detection Location Tracking Caregiver Tools 4.2/5
Medical Guardian $29.95 — $44.95 $124.95 device fee for Mini +$10 Shipping Waived with Annual Subscription Landline, Cellular Fall Detection GPS Location Tracking Caregiver App 4.1/5
GetSafe $24.95 $79-$229 equipment fee + $12 for Shipping Cellular Hands Free Voice-Activation Caregiver App 4.0/5
Medical Alert $22.95 — $37.95 $9.50 Shipping with Month-to-Month Plan Landline, Cellular Fall Detection Caregiver Apps 3.7/5
QMedic $30 — $45 None Landline, Cellular Activity Tracking GPS Location Tracking Caregiver Dashboard 3.7/5
BlueStar Senior Tech $23.95 — $35.95 None Landline, Cellular, Bluetooth Fall Detection Activity Monitoring Family and Mobile Apps 3.1/5
LifeStation $19.95 — $34.95 $50 Activation Fee for Mobile with GPS and Standard Payment Package Landline, Cellular Fall Detection GPS Location Tracking Caregiver Apps Alexa Integration 3.1/5
Lifenet $29.95 — $49.95 None Landline, Cellular Fall Detection GPS Location Tracking 2.65/5

MobileHelp: 5.0/5 Stars

Best for On-Demand Telehealth Services

MobileHelp is an industry leader offering six medical alert systems with numerous premium features and accessories available. While its low prices for high-quality services is noteworthy on its own, MobileHelp recently made their offerings even more useful with the introduction of MDLIVE. MDLIVE is an on-demand telehealth service that allows MobileHelp users to speak with a board-certified physician via phone or video without scheduling an appointment or paying a copay. All MobileHelp customers may add MDLIVE to their service plan for under $10 per month.

MobileHelp’s Star Rating

MobileHelp earned a perfect 5-star rating and ranked first among the top 20 medical alert companies we reviewed. Its number-one spot cannot be attributed to just one thing. MobileHelp scored highly in all ranking categories, and particularly excelled in the In-Home Systems, Mobile Systems, and Reliability and Reputation categories, earning a perfect 10 in all three. MobileHelp’s in-home system is the least expensive of all companies we reviewed, and it is one of the very few companies that does not charge an extra fee for a cellular version. In addition, MobileHelp offers a generous free-trial period of 30 days and is extremely transparent about its pricing and policies on its website.

Highlights

  • MobileHelp devices have earned a Good Manufacturing Practice seal from the FDA.
  • The brand’s medical alert systems have multiple third-party quality certifications.
  • MobileHelp is based in Florida and serves customers in all 50 states.
  • Dispatch services are provided by Rapid Response, one of the nation’s top monitoring companies.
  • LanguageLine connects callers to interpreters specializing in more than 240 languages.
  • According to company data, MobileHelp answers an emergency call every eight minutes.
  • The company is an accredited BBB member with an A+ rating.

The Takeaway

Whether you’re shopping for in-home or remote coverage, MobileHelp is a strong contender. It’s a great choice if you’re looking for a budget-friendly package that you can share with a partner or spouse. The company offers a suite of free and paid caregiver tools through MobileHelp Connect as well as a line of attractive jewelry-style pendants made by Trelawear.

PLAN MONTHLY PRICE STARTING COSTS SERVICE RANGE BATTERY LIFE EXTRA FEATURES
MobileHelp Classic $19.95 $49.95 One-Time Fee and $15 Shipping with Month-to-Month Payment Cellular 1,300′ Console: 30 Hours
Pendant: 5 Years
Optional Fall Detection
MobileHelp Wired Home $24.95 $15 Shipping with Month-to-Month Payment Landline 1,300′ Console: 30 Hours
Pendant: 5 Years
Optional Fall Detection
MobileHelp Solo $37.95 $15 Shipping with Month-to-Month Payment Cellular Nationwide 24 Hours GPS Location Tracking
Optional Fall Detection
MobileHelp Duo $41.95 $15 Shipping with Month-to-Month Payment Cellular Nationwide Varies GPS Location Tracking
Optional Fall Detection
Mobile Duo $44.95 $15 Shipping with Month-to-Month Payment Cellular Nationwide 24 Hours GPS Location Tracking
Optional Fall Detection
MobileHelp Touch $49.95 $15 Shipping with Semi-Annual Payment Cellular Nationwide 24 hours; 12-hour backup for tablet GPS Location Tracking
Optional Fall Detection

What Customers Like

Adult children researching medical alert systems for their parents repeatedly comment on MobileHelp’s reputation and number of positive online reviews. A son who subscribed for his parents said, “Several reputable entities rated MobileHelp highly in the field. Mobilehelp had 2,300+ reviews with a 4.6/5 rating overall.” Others talk about the exceptional service, including one son who stated “Great customer service from ordering to monitoring.”

Learn more about how to get a Medical Alert System from MobileHelp.

What Customers Don’t Like

In the rare complaints about MobileHelp service, subscribers most often cite difficulties canceling a subscription. A problem with the GPS identifying an incorrect location is another concern reported by customers.


LifeFone: 4.6/5 Stars

Best for Industry Experience

Based in White Plains, New York, LifeFone has specialized in medical alert services since the 1970s, and it continues to be one of the nation’s leading providers. LifeFone is a top choice for seniors seeking in-home or mobile coverage, and its two-in-one package is a great value. This enduring brand excels in all areas, which is why it’s been recognized by Harvard Medical School, Consumers Digest and review sites such as TrustPilot.

LifeFone’s Star Rating

LifeFone ranked second-highest among the top medical alert systems, with an almost-perfect score of 4.6/5 stars. LifeFone scored in the top 30% in all ranking categories, but particularly excelled in Availability of Add-Ons with a score of 10.0. LifeFone was one of only two companies to offer all of the add-ons for which we evaluated, including less-common features like medication reminders and activity tracking. LifeFone also scored highly thanks to its consumer-friendly policies, including a 30-day money-back guarantee, $0 activation fees, and a price-lock guarantee that prevents future rate hikes.

Highlights

  • LifeFone has been endorsed by the National Council on Aging and WebMD.
  • New customers can take advantage of a 30-day trial.
  • Helpful dispatchers respond to calls in approximately one minute.
  • The company’s monitoring centers aren’t certified, but the brand has substantial experience.
  • LifeFone has an A+ rating with the Better Business Bureau.
  • Free basic protection is available for spouses.

The Takeaway

Established providers sometimes lose their competitive edge, but LifeFone holds its own by offering a comfortable balance of quality and value. Its equipment performs well, and its fee structure allows subscribers to save money or purchase optional upgrades, such as daily wellness checks, scheduled phone calls or medication reminders. In each area, LifeFone provides the level of service that we expect from a top-tier provider.

PLAN MONTHLY PRICE STARTING COSTS SERVICE RANGE BATTERY LIFE EXTRA FEATURES
At-Home Landline $29.95 None Landline 1,300′ Console: 32 Hours
Pendant: 2—5 Years
Optional Fall Detection
At-Home Cellular $34.95 None Cellular 1,300′ Console: 32 Hours
Pendant: 2—5 Years
Optional Fall Detection
At-Home & On-The-Go With GPS $36.95 None Cellular 600′ (Home), 350′ (Mobile) 30 Hours Optional Fall Detection
GPS Location Tracking
At-Home & On-The-Go Necklace $43.95 None Cellular Nationwide 30 Days (Standby) Optional Fall Detection
GPS Location Tracking

What Customers Like

Subscribers and their family members frequently mention the positive experiences they have interacting with LifeFone customer service reps and call center operators. One daughter wrote, “I couldn’t ask for a better customer service. It was excellent. And if I have any questions, I don’t think twice about picking up the phone, calling and asking.” Customers also recommend the service and appreciate the security it provides.

What Customers Don’t Like

The sensitivity of the device and a somewhat slow response time are drawbacks mentioned by some reviewers. Other issues subscribers report are the equipment’s limited range and a lack of tech support on weekends.


Bay Alarm Medical: 4.2/5 Stars

Best for Overall Value

Bay Alarm is a longstanding security and medical alert company with more than 70 years of experience. The California-based company offers quality equipment and reliable nationwide service at a competitive price. However, packages that offer Bay Alarm Medical’s industry-leading devices and accessories together at an affordable rate are one of the brand’s strengths. Its systems are available as standalone products or in premium packages, which include additional features and add-on devices for a low, bundled cost. These packages make Bay Alarm Medical’s high-quality devices even more affordable, offering consumers incredible value. And when it comes to monitoring credentials, Bay Alarm Medical is among the best. The company operates three U.S.-based call centers that are certified by The Monitoring Association and meet UL standards.

Bay Alarm Medical’s Star Rating

Bay Alarm Medical earned a star rating of 4.2/5, making it the third-highest rated medical alert company out of the 22 we ranked and reviewed. The company scored highly in the In-Home Systems and Mobile Systems categories due to its low device prices. In both categories, Bay Alarm Medical offered the least expensive device. Bay Alarm Medical earned its highest score in the Reliability and Reputation category, which can be primarily attributed to its A+ rating with the Better Business Bureau, extremely well-designed and informative website, and very quick average response time of 10 seconds.

Highlights

  • Bay Alarm Medical is an established company owned by one of the nation’s leading security companies.
  • Bay Alarm Medical’s monitoring centers meet the industry’s highest quality standards as defined by UL and TMA.
  • Discounts are available to members of AARP, USAA and other national organizations.
  • Bay Alarm Medical offers a risk-free 30-day trial, and subscribers can cancel at any time.
  • Spouses receive free coverage.

The Takeaway

If you want protection that covers you at home and on the go, Bay Alarm Medical offers some of the best bundled rates in the industry. However, the company does have a $10 surcharge for cellular service. Bay Alarm Medical devices give you access to emergency response teams at home, on the road, and nearly anywhere nationwide. Additionally, customers enjoy the peace of mind of working with an industry leader.

PLAN MONTHLY PRICE STARTING COSTS SERVICE RANGE BATTERY LIFE EXTRA FEATURES
In-Home $19.95 $9.95 Shipping Landline (+$10 for Cellular) 1,000′ Console: 32 Hours
Pendant: 5 Years
Optional Fall Detection
In-Car $29.95 $9.95 Shipping Cellular N/A N/A Crash Detection
Caregiver App
Mobile $24.95 $99 device purchase fee + $9.95 Shipping Cellular Nationwide 72 Hours Optional Fall Detection Optional GPS Location Tracking
SOS Smartwatch $24.95 $179 device purchase fee + $9.95 Shipping Cellular Nationwide 18-24 Hours Built-in Step Tracker Touchscreen Two-Way Communication

What Customers Like

Bay Alarm Medical’s knowledgeable, patient staff receives overwhelmingly positive feedback. One reviewer shared, “The rep was very helpful. [He] took his time so I could understand everything he was telling me. He spoke very clear and was very polite.” Reviewers also appreciate Bay Alarm’s ease of installation and range of choices. According to one subscriber, “It was easy to set up, great options and features, easy to configure for our needs … .”

What Customers Don’t Like

There are few subscriber complaints about Bay Alarm. The only issues reported concern batteries losing charge too quickly, contradictory instructions about how to correctly charge the devices and moderately long hold times when contacting customer service.


Medical Guardian: 4.1/5 Stars

Best Customer Service

Medical Guardian offers customers six high-quality medical alert device options, including the advanced Freedom Guardian smartwatch. While its wide variety of device options and reputation of reliability would make Medical Guardian a standout company on its own, its top-of-the-line customer service makes Medical Guardian an even more appealing option for buyers. Medical Guardian strives to assist customers every step of the way, from helping them determine which device is the best option for them to providing ongoing support after purchase. The dedicated Customer Care Team is available via phone and live chat to assist customers with any of their needs.

Medical Guardian’s Star Rating

Medical Guardian ranked among the top four of the medical alert companies we reviewed, with a score of 4.1/5  stars. The company scored highly in all categories and excelled in the Availability of Add-Ons metrics. Medical Guardian offers almost all of the add-on devices we researched, including sought-after activity tracking and real-time location tracking. The company also received above-average ratings in the In-Home Systems, Mobile Systems, and Extra Costs categories, contributing to its all-around high score.

Highlights

  • Medical Guardian maintains five core values for its business practices: Customers Above all Else, Innovation as our Motivation, Passion for Purpose, Building Meaningful Relationships, and Excellence in Results
  • Medical Guardian’s monitoring center is certified by the Underwriters’ Laboratory, Factory Manual Approved, and The Monitoring Association 5-Diamond Certified.
  • Medical Guardian is a member of the Electronic Security Association, acknowledging the company’s commitment to providing excellent service in emergencies.
  • All customers receive a free Welcome Kit that includes many helpful items such as a detailed user manual and an EMT information card.
  • Medical Guardian’s emergency monitoring services are available in all 50 states, and operators are 100% U.S.-based.
  • The company maintains an A+ rating with the Better Business Bureau.

The Takeaway

With six device offerings spanning basic in-home systems to the technologically-advanced smartwatch device, Medical Guardian has a system that will meet almost anyone’s needs. Combined with its commitment to customer support and very detailed website, including a helpful Product Quiz feature to help prospective customers determine which device is best for them, Medical Guardian will be a particularly good choice for first-time buyers of medical alert systems.

PLAN MONTHLY PRICE STARTING COSTS SERVICE RANGE BATTERY LIFE EXTRA FEATURES
Classic Guardian $29.95 $10 Shipping (waived with annual payment) Landline 1,300′ 32-hour backup Optional fall detection
Home Guardian $34.95 $10 Shipping (waived with annual payment) Cellular 600′ 30-hour backup Optional fall detection
Active Guardian $39.95 $10 Shipping (waived with annual payment) Mobile Nationwide 5 days GPS Location Tracking Optional Fall Detection
Mini Guardian $39.95 $124.95 one-time equipment fee $10 Shipping (waived with annual payment) Mobile Nationwide 5 days GPS+WiFi+Triangulation Location Tracking Optional Fall Detection
Mobile Guardian $44.95 $10 Shipping (waived with annual payment) Mobile Nationwide 24 hours GPS Location Tracking
Freedom Guardian Smartwatch $44.95 $299.95 one-time equipment fee $10 Shipping (waived with annual payment) Mobile Nationwide 2 days Advanced Location Tracking Text-to-Speech Messaging Reminders and Alerts Low Battery Notification

What Customers Like

Current and past Medical Guardian customers speak highly of their experience with the company’s products and services. Many mentioned the great customer service and customer service agents’ willingness to assist them, with one happy customer describing the “Outstanding services. Excellent customer services.” Another happy customer, whose mother uses a Medical Guardian device, said “I cannot say enough good things about Medical Guardian… Great staff answering her call. Very professional, and reassuring! I highly recommend them!”

What Customers Don’t Like

Some customers have expressed dissatisfaction with their experience returning their Medical Guardian device and canceling service. Unsatisfied reviewers were surprised by the restocking fee of $50 that Medical Guardian charges upon return, and by the $15 they had to pay for return shipping.


GetSafe: 4.0/5 Stars

Best for Simple, Hands-Free Protection

GetSafe takes a different approach to emergency monitoring than other companies in the medical alert industry. Unlike essentially all other medical alert systems which have a wearable component, GetSafe is an entirely hands-free system (though a wearable is included for those who prefer to have a personal alert button on their body). Many seniors and their families say that the biggest barrier to emergency protection is getting their loved one to remember or be willing to wear the device every day. GetSafe eliminates this problem by using a combination of voice-activated systems and emergency buttons placed throughout the user’s home, so there’s no need to remember to put on a pendant or wristband each day. GetSafe’s unique approach to monitoring can be the perfect option for those who haven’t had luck with traditional medical alert systems in the past.

GetSafe’s Star Rating

GetSafe rounds out the top five medical alert companies with a score of 4.0/5. While its starting costs can be high, especially for its more comprehensive systems, the monthly monitoring fee is among the lowest of all companies we reviewed. In addition to earning a 9.0/10 in the In-Home Systems category for its low monthly cost, GetSafe scored highly in the Availability of Add-Ons ranking. All GetSafe users and their families can access an accompanying mobile app for $5 a month, and wall buttons are included with every service package. GetSafe earned its highest score in the Reliability and Reputation category with one of the fastest average emergency call response times (10 seconds) and an easy-to-navigate website with a helpful live-chat feature.

Highlights

  • All GetSafe systems are hands-free.
  • GetSafe offers one of the lowest monthly monitoring rates.
  • The system is easy to install and the GetSafe website features helpful installation videos, meaning no installation fees for the customer.
  • The certified monitoring center is U.S.-based and operates 24/7.
  • GetSafe offers a risk-free 30-day trial.

The Takeaway

GetSafe helps fill a hole in the medical alert industry for those for whom wearing a device every single day just isn’t possible. Its products are perfect for seniors who want protection in their home without having to remember a wearable device. GetSafe currently does not offer any mobile devices, so it isn’t suitable for those looking for on-the-go emergency coverage. While startup costs can be high, especially for larger service packages, the low monthly monitoring fee helps keep costs reasonable overall.

PLAN MONTHLY PRICE STARTING COSTS SERVICE RANGE BATTERY LIFE EXTRA FEATURES
Starter $24.95 $79 Equipment Cost Cellular 20 feet voice range; 1,000 feet pendant range 32-hour Backup Completely Hands-Free
Optional Fall Detection
Standard $24.95 $149 Equipment Cost Cellular 20 feet voice range; 1,000 feet pendant range 32-hour Backup Completely Hands-Free
Optional Fall Detection
Select $24.95 $229 Equipment Cost Cellular 20 feet voice range; 1,000 feet pendant range 32-hour Backup Completely Hands-Free
Optional Fall Detection

What Customers Like

Customer reviews for GetSafe skew positive, with one customer describing the company as “very easy to deal with.” Another reviewer appreciates the “Step by step guidelines on what and how to do what you need” that GetSafe provides.

What Customers Don’t Like

Most negative reviews for GetSafe found online are from the company’s time as a home security system retailer, so it’s possible the same concerns will not apply for medical alert customers. A common issue among unhappy reviewers was payment processing problems.


Medical Alert: 3.9/5 Stars

Best for Quality Service With Annual Discounts

Medical Alert is one of the nation’s largest PERS providers. It’s owned by Connect America, a national company that operates several monitoring firms. Medical Alert offers customers the choice of monthly, semiannual, and annual billing agreements with no long-term commitment. In addition to receiving discounts that can bring monthly costs below $20, customers who select an annual or semiannual plan get extra benefits, such as free shipping and a lockbox that can help emergency responders enter your home. Optional fall detection is available with all plans for a monthly fee.

Medical Alert’s Star Rating

Medical Alert earned a star rating of 3.9/5, making it the sixth-highest rated medical alert company of the top twenty we reviewed. Medical Alert offers quality devices at a low cost compared to other top companies, as demonstrated by its very high scores in the Extra Costs, In-Home Systems, and Mobile Systems categories. In all three categories, Medical Alert ranks the second-highest with scores of 9.0 or higher. Its monthly rates for its mobile and in-home systems are among the lowest in the industry, and the costs go down even further when paid for on a semiannual or annual basis. Medical Alert also keeps startup costs to a minimum, only charging a small shipping fee and no other one-time device, activation, or installation fees.

Highlights

  • Medical Alert serves customers in the United States, Puerto Rico and the Virgin Islands.
  • UL-certified monitoring centers employ bilingual agents who are fluent in English and Spanish.
  • Caregivers can take advantage of the 365Access app, which includes location tracking and notification tools.
  • Specially trained SIA-certified operators answer calls in 30 seconds or less and stay on the line until help arrives.
  • Medical Alert offers a 100% satisfaction guarantee.

The Takeaway

This Connect America company is impressive with its customer-focused features that benefit seniors and caregivers. It answers calls promptly, provides professional service and rewards loyal subscribers by offering semiannual and annual billing discounts. The company also offers a range of vanity pendants that resemble designer jewelry.

PLAN MONTHLY PRICE STARTING COSTS SERVICE RANGE BATTERY LIFE EXTRA FEATURES
At-Home Landline $22.95 $9.50 Shipping with Month-to-Month Plan Landline 1,300′ Console: 32 Hours
Pendant: 2—5 Years
Optional Fall Detection
At-Home No Landline $32.95 $9.50 Shipping with Month-to-Month Plan Cellular 1,300′ Console: 32 Hours
Pendant: 2—5 Years
Optional Fall Detection
At-Home & On-The-Go Package $37.95 $9.50 Shipping with Month-to-Month Plan Cellular 600′ (Home), 350′ (Mobile) Varies GPS Location Tracking
Optional Fall Detection
On the Go $37.95 $9.50 Shipping with Month-to-Month Plan Cellular Nationwide 5 Days (30 Days Standby) GPS Location Tracking
Optional Fall Detection

What Customers Like

Many subscribers find that Medical Alert gives them greater security and peace of mind. They also appreciate the friendliness of the staff, and the company’s fast response when help is needed. One woman shares, “I’ve had Medical Alert for about 12 years … Their reps have all been nice. When I fell in the bathroom, I called them and they answered right away.”

What Customers Don’t Like

A lengthy wait for customer service assistance is one of the few downsides mentioned in reviews of Medical Alert. Other subscribers cite the weight of the device and how easy it’s activated as disadvantages.


QMedic: 3.7/5 Stars

Best for Innovative Features

Created by MIT scientists, Boston-based QMedic has taken medical alert technology to the next level. It provides a user-friendly experience for seniors along with advanced features geared toward tech-savvy caregivers. One of the brand’s most unique services is compliance monitoring, which detects whether or not the user is actually wearing their medical alert device. Caregivers also have access to an online dashboard which provides a visual overview of the subscriber’s activity levels, including periods of sleep or activity. Automatic alerts notify caregivers when unusual patterns are detected, and algorithms may trigger automatic wellness calls. This system is designed to prevent false alarms while providing enhanced peace of mind. Although QMedic is developing fall-detection features, its approach emphasizes the value of nonintrusive activity tracking and passive monitoring.

QMedic’s Star Rating

QMedic earned a score of 3.7/5 stars. Its place in the top ten best medical alert providers can largely be attributed to its advanced device features including compliance monitoring and generous discounts for annual subscribers. Though its devices are priced above the industry average when paid for monthly, the annual rates reduce the overall cost by up to $140 per year. And while QMedic has less industry experience than some competitors with 10 years in the medical alert space, its informative and user-friendly website, free trial period, and A+ rating with the Better Business Bureau contributed to a high score in the Reliability and Reputation category.

Highlights

  • QMedic is a leader in passive medical monitoring.
  • The company uses proprietary tracking technology developed by MIT experts.
  • Alert systems offer excellent performance and onboard self-testing tools that minimize maintenance requirements.
  • Calls are routed to two U.S.-based monitoring centers that respond in 30 seconds on average.
  • Contracted monitoring centers in Utah and Idaho are certified by UL and TMA.
  • QMedic supports active or proactive alerts in addition to wellness calls.
  • The service is backed by a 30-day money-back guarantee.

The Takeaway

This service stands out for its user-friendly products, no-nonsense pricing and innovative technology. We like the simple interface and onboard self-testing function, which provides enhanced peace of mind. However, seniors may need to partner with a relative to take full advantage of QMedic’s suite of activity tracking tools.

PLAN MONTHLY PRICE STARTING COSTS SERVICE RANGE BATTERY LIFE EXTRA FEATURES
In-Home $30 None Landline/Cellular 1,000′ 2 Years Activity Tracking
Self-Testing
Mobile GPS $45 None Cellular Nationwide 14 Days GPS Location Tracking

What Customers Like

QMedic is highly rated for its reliability and advanced features. Family members in particular appreciate being alerted to unusual sleep or activity patterns, or when their loved one isn’t wearing the device. The uncomplicated set up is also a plus; as one reviewer says, “Set up is really easy. In a nutshell, it’s plug, test and play!”

What Customers Don’t Like

The only downside mentioned in reviews of QMedic is the lack of an automatic fall detection option for use at home or when on the go.


BlueStar Senior Tech: 3.1/5

Best for Customized Service Plans

BlueStar Senior Tech is a veteran-owned business that has provided medical monitoring and personal emergency response systems for more than 20 years. The company offers a wide selection of equipment and service plans at a variety of price points. While the brand’s expansive product catalog adds to the complexity of the decision-making process, BlueStar Senior Tech is “committed to providing a customized approach to [its] customers.” It does not believe in a “one-size-fits-all” approach to emergency medical monitoring, and will work with prospective and active users to find a device and plan that meets their specific needs.

BlueStar Senior Tech’s Star Rating

BlueStar Senior Tech’s star rating of 3.1/5 makes it the eighth-highest rated of the top 20 medical alert companies. The company received a score of 9.0/10 in the Availability of Add-Ons category, offering almost all common add-ons and some less-common features including on-demand location information and medication reminders. While its prices for in-home medical alert systems and shipping are higher than average, its large selection of devices and add-ons helps ensure that all BlueStar Senior Tech customers are able to build a service plan that fully meets their needs. It also offers military discounts to help make its devices more affordable for veterans and their spouses.

Highlights

  • Blue Star Service Solutions is a full member of the Medical Alert Monitoring Association.
  • The company offers military discounts and supports a variety of nonprofits that serve veterans.
  • Mobile and in-home systems have two-way voice capabilities and support advanced features, including fall detection.
  • Some devices can communicate with health monitoring systems, medical devices and smartphone apps.
  • Blue Star offers a selection of value-added features, including caregiver dashboards and severe weather alerts.
  • Mobile pendants are waterproof and resist extreme temperatures.

The Takeaway

Blue Star offers a wide selection of unique products ranging from basic in-home systems to portable GPS-enabled panic buttons and stylish BellPal watches that can interact with an emergency app on your smartphone. The company sells self-monitored systems and offers some unique features for caregivers. Rates are competitive, and there are options for every lifestyle.

PLAN MONTHLY PRICE STARTING COSTS SERVICE RANGE BATTERY LIFE EXTRA FEATURES
Sentry $23.95 None Landline 600′ 24 Hours w/o Power
SafeGuard $27.95 None Cellular 600′ 36 Hours w/o Power Fall Detection
Family App
Ranger 4G $31.95 None Cellular Nationwide 40 Hours (Standby) Fall Detection
GPS Location Tracking
Mobile App
Admiral Alert $35.95 None Cellular Nationwide 48 Hours Fall Detection
Mobile App
BellPal Watch $9.95 $199.95 Equipment Fee Bluetooth (Requires Smartphone) Nationwide 6 Months Fall Detection
Mobile App

What Customers Like

Reviewers consistently cite Blue Star Senior Tech’s affordable cost, quick response time and polite, knowledgeable operators. Many appreciate that the company is veteran-owned and reliable; as one woman says, “I recommend it to anybody that’s been in the military. They go beyond the call of duty. When they tell you they’re going to do something, they do it.”

What Customers Don’t Like

Subscribers report issues with the range on the mobile device and problems with the accuracy of the GPS locator. Being sent a mobile system instead of a landline equipment was another problem noted by a customer.


LifeStation: 3.1/5 Stars

Best for Caregiver Support

LifeStation has more than 40 years in the medical monitoring business. The brand’s mobile systems include GPS and Wi-Fi tracking capabilities as part of its Find My Loved One feature. “Find My Loved One” allows caregivers to locate the exact location of their loved one’s device on-demand, providing peace of mind for caregivers and other loved ones. As of 2020, LifeStation devices are compatible with Amazon Alexa systems, so caregivers can use their Alexa device to access their loved one’s location and other crucial device information. And with a 24/7 customer service line, LifeStation agents are available around-the-clock to support caregivers with any questions or concerns they have involving their loved one’s medical alert monitoring.

LifeStation’s Star Rating

LifeStation earned a star rating of 3.1/5 stars, making it the ninth-highest rated company out of 22 total contenders. LifeStation received above-average scores in most ranking categories, but its highest was for Availability of Add-Ons. LifeStation offers many of the add-on services and devices we included in our evaluation, including location information on-demand, fall detection, and a device protection plan. And, LifeStation’s in-home and mobile devices were both among some of the least expensive of the companies we ranked.

Highlights

  • LifeStation uses UL- and TMA-certified monitoring centers.
  • Emergency calls are handled by accent-neutral operators based in the United States.
  • Interpretation services support more than 240 languages depending on your preferences.
  • There’s no contract, and customers who cancel in the first 30 days receive a full refund minus shipping.
  • LifeStation’s tracking service uses GPS, Wi-Fi and algorithms to pinpoint the subscriber’s location.
  • LifeStation provides caregiver tools and integrates with Amazon Alexa.

The Takeaway

In an industry where companies sometimes seem like clones, LifeStation has gone out of its way to develop value-added features and caregiver monitoring functions that separate it from the competition. Response times average around 20 seconds, and best of all, its rates are competitive, especially given the quality of the service.

PLAN MONTHLY PRICE STARTING COSTS SERVICE RANGE BATTERY LIFE EXTRA FEATURES
In-Home Traditional $21.95 None Landline 500′ Console: 36 Hours
Pendant: 4 Years
Optional Fall Detection
In-Home Plus $30.95 None Cellular 500′ Console: 36 Hours
Pendant: 4 Years
Optional Fall Detection
Mobile with GPS $37.95 $50 Activation Fee with Standard Payment Package Cellular Nationwide 5 Days Optional Fall Detection
GPS Location Tracking

What Customers Like

Customers consistently praise LifeStation’s patient, courteous staff and the system’s ease of use. One subscriber who installed the system for his elderly parents commented, “The LifeStation team is amazing! Every person I spoke to from the initial call through shipping, setup and testing were so helpful and patient.”

What Customers Don’t Like

The few negatives subscribers report include being charged before the service is activated and difficulties switching plans and returning equipment. The length of time it takes to get a refund when canceling the service was another issue noted.


Lifenet Medical Alert Systems: 2.6/5 Stars

Best for Transparent Pricing

Founded in 2008, Lifenet is a relative newcomer to the industry, and the company impresses with its refreshingly transparent pricing system. Lifenet doesn’t have activation fees or hidden charges. Customers can choose from monthly service plans as well as quarterly and annual options with discounted rates. On top of that, seniors have the freedom to cancel at any time. The company even offers prorated refunds, which is virtually unheard of in the telecom and security industries.

Lifenet’s Star Rating

Lifenet’s transparent pricing model greatly contributed to its star rating of 2.6/5 stars. Though its monthly monitoring costs are higher than the industry average and its offerings somewhat limited, making for lower scores in most ranking categories, Lifenet earned a perfect 10.0/10 score in the Extra Costs category. The only extra cost that Lifenet users will ever face is shipping, which is less than $10. There are no device, activation, or installation fees, and fall detection is even included in the monthly cost for Lifenet’s mobile device. The company’s consumer-friendly cancellation and refund policies also helped Lifenet earn its place in the top ten medical alert companies.

Highlights

  • Lifenet uses 100% U.S.-based monitoring centers that are certified by the Electronic Security Association.
  • Subscribers can customize their emergency response plan and make changes at any time with no additional fee.
  • Add-ons, such as daily wellness calls and extra help buttons, are available for a nominal fee.
  • In-home equipment has an excellent transmission range and long battery life.
  • Lifenet medical monitoring is available in Canada and all 50 states.
  • The company offers shipping, returns and activation at no charge.
  • Call-center operators include EMT-certified medical professionals.

The Takeaway

Lifenet’s base rates are slightly higher than the competition, but there are no hidden fees. With this company, what you see is what you get. Lifenet is a strong choice for seniors seeking reliable service without hidden fees or sales gimmicks.

PLAN MONTHLY PRICE STARTING COSTS SERVICE RANGE BATTERY LIFE EXTRA FEATURES
Home & Garden $29.95 None Landline 1,000′ Console: 32 Hours
Pendant: 4 Years
N/A
Home & Away $49.95 None Cellular Nationwide N/A Fall Detection
GPS Location Tracking

What Customers Like

Lifenet subscribers talk about the company’s fast response time, and the peace of mind that having the service provides. The patient, knowledgeable staff is also commented on. “You went above and beyond to help me. Thank you for taking the time to answer my questions and explain everything to me,” shares one customer.

What Customers Don’t Like

There are few negatives reported about Lifenet. One reviewer who subscribed for a parent found the system somewhat difficult to set up, even with phone assistance from a company representative.


How to Choose a Medical Alert System

Two key considerations when choosing a medical alert system are the type of coverage and extent of protection it provides. In-home systems provide coverage throughout your house and in the yard. Mobile systems offer coverage when you’re on the go. They use a combination of cell phone service and GPS satellites to maintain a constant link between emergency dispatchers and subscribers anywhere in the nation. Mobile and in-home systems are quite specialized, so it’s important to think about the type of coverage you need and what kind of system will work in your environment. Doing so can help you determine which of the following types of systems you need:

  • Landline system. Most in-home medical alert systems connect to your existing phone line using a standard telephone jack. They also work with VoIP service. However, this option may not be as reliable.
  • Cellular or mobile system. Cellular systems are ideal for mobile use as well as homes that don’t have a landline. The SIM card is provided by the company, so there’s no extra fee. However, average rates tend to be higher.
  • Dual system. Combination systems use separate at-home and mobile devices to provide complete protection no matter where you are. They’re also suitable for sharing with a spouse.

Defining the type of system you need is just the starting point. To ensure that you pick the right medical alert system, you also need to:

Consider Base Units, Pendants and Help Buttons

Equipment and device options are fairly standard across the industry, but you still have some choices to make. Most systems have limited aesthetic appeal, and there’s minimal variety between manufacturers. Here are a few of the most common options you can choose from:

  • In-home base units feature an emergency help button, paging functions and built-in speakers that allow seniors to communicate with dispatchers in case of an emergency.
  • Emergency response pendants are designed to be carried with you at all times, even in the shower. Devices can be worn like a watch or necklace, and there’s a belt-clip option for men.
  • Optional wall- or surface-mounted help buttons that you can place in the bathroom, near a nightstand, in the basement or in other areas where falls are common.
  • Jewelry-style pendants are a newer option available through several providers. They tend to have a shorter transmission range and battery life, but they’re remarkably discreet.
  • Most mobile monitoring devices resemble a small flip phone or pager. These systems can be carried in your pocket, clipped on your waistband or stored in a purse.

Factor in Audio Quality When Selecting Equipment

Audio quality is a make-or-break feature. Unfortunately, it’s difficult to gauge the system’s volume until you have the unit in your house. Sound levels for most in-home systems range from 60 to 80 decibels, which can affect your ability to communicate with operators, especially from a distance. If you have hearing concerns, it’s important to select a provider that offers a 30-day money-back guarantee in case the system doesn’t meet your needs.

Investigate Battery Life

Battery life is another important consideration that can influence your choice of system and devices. Here are some factors to consider:

  • In-home base units plug into a standard electrical outlet and are equipped with emergency battery packs. If you live in an area that’s prone to power outages or severe weather, select a model that provides at least 30 hours of backup power.
  • Traditional push-button pendants and wristbands use stable lithium-ion batteries that may last up to 7 years depending on the model. Some providers even measure battery levels during self-tests and send replacements as needed.
  • Mobile devices with advanced features, such as two-way voice communication and GPS tracking, may need recharging every few days or weeks depending on the system’s design and features.

To help you compare the available options, you should also ask yourself how often you want to recharge your device. Do you prefer simple features if they extend the battery life, or are you comfortable recharging the device often so that you’re protected when you’re driving, traveling and running errands?

Think About Service Plans

Medical alert companies typically sell their monitoring service for a fixed monthly rate and provide customers with equipment to use during that time. Most providers offer basic packages for one price and à la carte upgrades at an additional cost. For example, with an in-home system, you’ll receive a base unit and a wristband or neck pendant. If you want extra pendants or help buttons, you’ll typically pay $3-$5 extra per button, per month. Understanding what you get with a plan and the extras you need makes it easier to compare offerings and prices from different companies.

Basic plans generally include:

  • Cellular service for in-home or mobile systems
  • One base unit for in-home plans
  • The first pendant or wristband

With most providers, you pay extra for:

  • Landline phone service
  • Equipment that’s lost or damaged
  • Additional help buttons or pendants

Compare Fee Structures and Pricing Plans

In the past, some companies locked customers into ironclad three-year contracts that could only be canceled in extreme situations, such as nursing home placement. Mercifully, the industry has moved away from this model. Most top-rated providers offer month-to-month service agreements that you can cancel at any time, and there are no penalties as long as you return the equipment.

If you sign up for quarterly or annual billing, many companies give you a discount and extra benefits, such as free device protection or a lockbox for emergency responders. Just make sure that the company offers prorated refunds in case you decide to cancel. With so many providers competing for your business, there’s really no need to go with a company that has hefty activation fees or cancellation penalties.

Did You Know? Seniors can receive free quotes for personal safety monitoring, medical alerts and wander prevention services for those with Alzheimer’s. Receive a quote here.

Decide on Extra Features and Add-Ons

Standard service plans include 24/7 monitoring and basic equipment, but companies offer numerous upgrades. Here are a few of the most popular value-added features to look for:

  • GPS tracking allows emergency operators to pinpoint the subscriber’s exact location in case of an emergency. This feature is ideal for seniors with Alzheimer’s or wandering concerns.
  • Fall-detection functions use accelerometers and algorithms to detect unusual movements. This enhanced feature costs $5-$10 per month. Technology is improving, but it still has limitations.
  • Caregiver dashboards that display activity and tracking information are ideal for tech-savvy relatives who want a convenient, unobtrusive way to check on loved ones.
  • Medical alert systems can also be used as a daily wellness tool. For a nominal fee, many providers offer medication reminders and daily check-in functions.
  • As technology improves, more providers are developing mobile emergency response apps and voice-activation tools that can interact with Alexa and home automation devices.

Define Your Emergency Response Needs

Medical alert systems and other PERS are designed to get you help when you need it while preventing false alarms the rest of the time. If you activate the help button, a specially trained operator will answer your call in a matter of seconds. Communication is handled through the base unit, but you can also choose a pendant with two-way voice capabilities.

If you’re unable to communicate with the dispatcher due to medical reasons or the location within your home, the operator will contact emergency responders and treat the situation as a genuine emergency.

Nearly all companies allow subscribers to create a customized plan that instructs operators to contact a friend, relative or neighbor before calling 911. In many cases, it’s much more convenient and appropriate to contact a neighbor or relative rather than police or emergency medical services.

Companies are also moving toward passive monitoring systems that use smart technology to detect unusual movement patterns and trigger automatic wellness calls. If these are the features you want, it may narrow down your choice of systems and providers.

Weigh Provider Credentials

To help you determine if a medical alert company provides timely, reliable service that will meet your needs, be sure to check these four credentials:

  • Average response times: Ideally, the company should answer emergency calls in one minute or less. You also want to find a provider that offers consistent service around the clock.
  • Qualifications: Industry certifications can help you evaluate a provider’s commitment to quality service. TMA’s Five Diamond certification is one of the most rigorous. Underwriters Laboratories, Factory Mutual and the Electronic Security Association also offer third-party quality assurances.
  • Monitoring centers: Look for providers that have at least two onshore facilities. The best providers invest in operator training programs and often employ a nurse, EMT or medical supervisor who can assist during high-priority calls.
  • Language: For most consumers, U.S.-based operators are ideal. However, if English isn’t your first language, look for providers that employ bilingual agents or offer third-party interpretation services. Some companies support more than 200 languages.

Match a Medical Alert System to Your Particular Needs

Medical monitoring is a unique industry. The products are very similar, yet one small feature can determine whether or not the system can work for you. As you start the comparison process, identify your main requirements and any special features that you may need. Decide whether you want landline or cellular service. If you want mobile coverage, find out whether AT&T or Verizon works best in your area. Next, determine what features are important to you. Do you care about long battery life, or would you prefer a pendant that looks like an artisan necklace? As you consider the product’s features and functionality, one or two clear contenders will emerge. You can also learn more about each provider by checking online reviews to see how the system worked for customers in a similar situation.

If you’ve considered medical alert systems in the past but were overwhelmed by the number of options and underwhelmed by the lack of convenient features, the technology has improved. It’s less intrusive and more user-friendly. Consumers today have more options than ever, and we hope that this guide helps you find the right one for your lifestyle.

A Full Explanation of Our Ranking Methodology

We ranked the top 22 medical alert companies on the market today on factors including price, availability of premium features, and company history and reputation. In total, we evaluated five main categories (metrics) and 30 subcategories (sub-metrics). Metrics and sub metrics were weighted in proportion to how much of an impact that specific metric has on customers’ experience and bottom line. A full explanation of the metrics and sub-metrics involved in our data-driven analysis can be found below.

Extra Costs

We considered any costs users may face outside of their standard monthly monitoring fees. This includes startup fees such as activation and installation, as well as cancellation fees, shipping fees, and additional costs for common extra features. While these extra costs can add up with some companies, this metric accounts for just 10% of our rankings because they are typically one-time expenses and thus do not have as much of an impact on a user’s expenses overall. The sub-metrics are as follows:

  • Device/Equipment Fee: Does the company charge a one-time fee to lease or purchase the medical alert device itself, and if so, how much?
  • Activation/Installation Fee: Does the company charge a mandatory one-time fee to activate or install the device, and if so, how much?
  • Shipping Fee: How much must most customers pay for shipping (excluding sales, specials, discounts for longer payment periods, etc.)?
  • Fall Detection: How much extra per month does the company charge for automatic fall detection?
  • Cancellation Fees: Does the company charge cancellation fees when users choose to end their service? We measured this sub-metric in terms of “yes” or “no.”
  • Prorated Refunds: Do customers who choose to end their service before their subscription period has run out (i.e., six months into an annual payment) receive a prorated refund for unused months? We measured this sub-metric in terms of “yes” or “no.”

In-Home Systems

This metric evaluated a company’s in-home systems based on both cost and features. Because one’s monthly monitoring payments make up the majority of total medical alert costs, this metric was weighted at 25%. The sub-metrics are as follows:

  • Monthly Cost: How much do customers have to pay each month for standard emergency monitoring services? We always used the regular monthly price- not the annual or semi-annual prices, which are often discounted. If a company offers more than one in-home device, we chose the least expensive option.
  • Available Discounts: Does the company offer any discounts on the monthly monitoring fee for quarterly, semi-annual, or annual subscribers? We measured this sub-metric in terms of “yes” or “no.”
  • Extra Fee for Cellular In-Home: How much extra does it cost per month to use this system with a cellular connection rather than a landline?
  • Range: How far can users travel from their base station and still be protected by their medical alert system?
  • Showerproof: Can users wear their device in the shower, where falls are common? We measured this sub-metric in terms of “yes” or “no.”

Mobile Systems

Similar to the in-home systems category, the mobile systems ranking category focused on the devices’ monthly cost and features. Because the monthly monitoring cost and features available with one’s device have a major impact on customer experience, this metric was weighted at 25%. The sub-metrics are as follows:

  • Monthly Cost: How much do customers have to pay each month for standard emergency monitoring service? Again, if a company offers more than one device at different costs, we chose the least expensive option.
  • Available Discounts: Does the company offer any discounts on the monthly monitoring fee for quarterly, semi-annual, or annual subscribers? We measured this sub-metric in terms of “yes” or “no.”
  • Battery Life: How long does the device’s battery last in between charges?
  • Water-Resistant? Can users wear their device in the rain, and is it okay if it gets splashed? We measured this sub-metric in terms of “yes” or “no.”

Availability of Add-Ons

Add-on devices and features are an important element in determining a customer’s satisfaction. Even those who are only interested in basic add-on devices, such as a lockbox or wall-mounted button, will benefit from a company that offers these devices along with medical alert systems all in one shop. For those who need specific add-on features like medication reminders, the decision of which medical alert company to choose may rely solely on whether the company offers the needed service.

Because of the influence the availability of add-ons can have on a customer’s decision, this category is weighted at 20%. The goal of this ranking category was to evaluate the availability of these devices and features rather than their costs, and thus was measured using a yes/no system. The add-ons that we included in this ranking category (the sub-metrics) are as follows:

  • Fall detection
  • Lockbox
  • Wall buttons
  • Device protection plan
  • Caregiver portal/app
  • Location Information On-Demand (location tracking for caregivers)
  • Medication Reminders
  • Activity Tracking

Reliability and Reputation

Factors like cost, device battery life, and availability of desired add-on features are all tangible things that certainly impact a customer’s satisfaction with their medical alert company. But, other intangibles also can have a great impact on a user’s experience. In our Reliability and Reputation metric, we examined those intangibles that impact customer satisfaction and safety. Because of this impact, Reliability and Reputation was weighted at 20% of a company’s total score. The elements we chose to evaluate, our sub-metrics, are as follows:

  • BBB Rating: What is the company’s Better Business Bureau rating?
  • Monitoring Center Certified by 3rd Party: Does the company’s monitoring center(s) have certifications and ratings from third-party safety organizations? We measured this sub-metric on a yes/no basis.
  • Free Trial Period: Does the company offer new users a free trial period and, if so, how long is the trial?
  • Average Response Time: How long does it take, on average, for a user to speak with an emergency operator after pressing their medical alert emergency button?
  • Transparency/Ease of Finding Information on Website: Is the company’s website informative and user-friendly? Are prices, extra costs, and policies clearly explained on the website? Is it easy to find the information most important to customers? This sub-metric was measured on a scale from 1-10, with 10 being the most transparent and informative website.
  • Years in Business: For how many years has the company provided medical alert systems and services?
  • BBB Review Score: What is the company’s average score from consumer reviews on the Better Business Bureau website?

Frequently Asked Questions

Are Medical Alert Systems Expensive?

Medical alert systems typically cost between $20 to $45 per month or about $1 per day. Basic in-home systems with one pendant and a push-button base unit are the most affordable option. Mobile systems that include GPS tracking cost more, but their advanced capabilities can benefit active seniors, travelers and adults who are at risk of wandering. With fall detection and other add-ons, monthly costs can climb as high as $90. However, seniors may be able to save by signing up for annual or semiannual billing, and affinity discounts may be available to members of national organizations, such as AAA and USAA.

Will My Insurance Pay for a Medical Alert System?

Despite the proven benefits, most health insurance plans don’t cover the cost of personal emergency response systems. If you’re aged 65 or older, basic Medicare (Part A and Part B) doesn’t cover the cost of medical alert systems, but some Part C Medicare Advantage Plans do provide this value-added benefit. Coverage is sometimes available to homebound individuals who receive in-home care or self-directed services through Medicaid if the device helps them live in the community safely.

Do I Need to Purchase Special Equipment?

Usually, no. The majority of medical alert companies include the cost of equipment in their monthly monitoring fees. In other words, there’s usually no upfront charge for the device, but you may have to pay if the equipment is lost or damaged or if you fail to return it after you cancel your plan. If you’re purchasing equipment upfront, determine whether it’s self-monitored or tied to a certain provider.

How Long Do the Batteries Last?

Batteries in medical alert systems last anywhere from 24 hours to 7 years depending on the technology and design. GPS-enabled systems with two-way voice communication have the shortest battery life, especially when connecting to remote cell towers in rural locations. Most in-home base units remain active for up to three days without power. Lithium-ion batteries used in pendants and push buttons generally last for several years.

What Type of Phone Service Do I Need?

Nearly every medical alert company offers multiple service options. If you have a landline, the system uses your existing service. All you need is a phone jack. Landline systems are generally compatible with VoIP technology, but it’s important to remember that this system isn’t as reliable in case of Internet malfunctions or power outages.

Mobile devices come with their own SIM card, and you don’t have to purchase cell service since it’s already included in the monthly monitoring fee. There’s one drawback, however. Most cellular systems use AT&T’s nationwide network, which has coverage gaps in Nevada, Nebraska and Montana. If you don’t have AT&T, a Verizon-based service like GreatCall may give you an alternative.

Do I Need to Hire an Installer, or can I Set up the System Myself?

Medical alert systems are easy to use and install. In most cases, it takes five minutes or less. Installation is as simple as plugging in a phone jack, connecting the power supply and turning on the unit. If you need assistance, many companies can walk you through the process over the phone. You may also want to work with a tech-savvy relative who can take advantage of online monitoring tools.


Compare More Medical Alert Systems

For more information, read about our reviews of additional companies not included in this guide in head-to-head company comparisons to see how each stacks up against the competition:

Other Medical Alert Systems We’ve Reviewed

More About Medical Alert Systems


2022 Guides for Medicare, Medicaid, and Insurance for people recently unemployed

MPN Caregivers: How to Provide Support During Appointments

MPN Caregivers: How to Provide Support During Appointments from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) caregivers provide support during office visits? Dr. Naveen Pemmaraju shares key advice for caregivers to help improve and increase communication with healthcare providers for the sake of their loved one.

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju, here.

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Transcript:

Katherine Banwell:    

Well, we have another audience question. This one is from Richard. He wants to know what advice do you have for caregivers, and how can he be supportive during appointments?

Dr. Pemmaraju:         

Yeah. Richard’s question really is so important. Really, before the pandemic and now with the pandemic this extended time, this is the most important question that’s coming up. This is a challenge. I think a lot of our patients who are older, frail, live alone, they don’t even have the option to do that. That may be 25 percent of our patients right there,

And that’s very heartbreaking and difficult, and clearly, their care – it may not be compromised, but it’s certainly limited in some ways without getting that other perspective. Right? So, I think that’s important.

Now, out of the 75 percent of the people who may have someone that can be a part of their life, a lot of these folks, Katherine, are limited because of the pandemic. Most hospitals, smartly, I think, still have restrictions on not allowing every single person in the building just for health and safety protocols. So, telehealth has had to be a substitute, I would say, for that, and in a lot of cases, has been helpful. In some cases, frustrating, obviously, with technical difficulties, etcetera, etcetera.

I would say that the key is – and I really want this to be very specific. It would be easy to just say, “Yep, bring a loved one to your visit.” No, it’s not that easy, right? So, now, during the pandemic, I think two things are very important and what I’ve noticed. One is, if the patient is able to, if their health allows them to, prime the loved one or caregiver, “Hey, I’m going to be in the doctor’s office from this time.”

And I always say make it like the cable person visit, right? From 8:00 to 5:00. So, “Hey, today, on Tuesday, if you can have your cell phone on you, that would be nice, because I’m going to patch you in, and you can listen in the background.” This is actually a key pearl I can give to people. You’d be surprised how helpful that is. Because most people, if they’re not living in the same household or whatever – “Oh, I didn’t even know you were going to be – okay.”

Number two, when the loved one or caregiver is involved, which I encourage for everyone, try to discuss with them the night before, if your health allows you to, to go over some of the key questions. Say, “Hey, guess what? I only understand about 7 to 10 percent of what goes on in these visits, but I need you to ask this.” So, you can kind of prime your loved one to do that.

And then, lastly, you had mentioned earlier to have this list of questions. Well, that’s a great thing to give to the caregiver, right? So, if you’re able to use email and your family member is in California and you’re in Texas, maybe a quick email the night before.

“Hey, here’s what I’m thinking. In case I forget, will you ask this to the doctor?” A lot of these visits may only be five or 10 minutes, but you’d be surprised, if you have a list of two or three questions – boom, boom, boom – and then it’ll alleviate those worries there.

Lastly, I would also say don’t feel – I want to tell this to the viewers out there. Don’t feel pressured when you’re in the visit with us that you have to get every single thing out. And what I mean by that is now with email and the electronic medical record portal systems, there is some ability to contact people during – I’m sorry, after and between visits. So, maybe that might help you to not feel so much pressure in the visit.

Why You Should Speak Up About MPN Symptoms and Treatment Side Effects

Why You Should Speak Up About MPN Symptoms and Treatment Side Effects from Patient Empowerment Network on Vimeo.

Why should myeloproliferative neoplasm (MPN) patients speak up about symptoms and treatment side effects? Dr. Naveen Pemmaraju explains the importance of reporting any issues you may be experiencing to ensure the best care for you.

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju, here.

See More from Engage

Related Programs:

Expert Advice for Learning About Your MPNs Online

Expert Advice for Learning About Your MPNs Online

MPN Caregivers: How to Provide Support During Appointments

MPN Caregivers: How to Provide Support During Appointments

What's Your Role in Making Myelofibrosis Treatment Decisions?

Primary vs Secondary Myelofibrosis: What’s the Difference?


Transcript:

Katherine Banwell:    

Why is it so important for patients to speak up when it comes to symptoms or treatment side effects?

Dr. Pemmaraju:         

Well, I’m going to be that magician who you watch the TV show, they give away all the secrets. So, this is the big secret. Your doctor cannot read your mind. I hate to say that, Katherine. I just said it here, and it’s going to surprise some people. No, I mean, seriously. Right. So, I think the problem with the MPNs – not the problem, the caveat, the difficulty – is if you are a patient, you have this war that’s suffering inside of you. I know that as an expert person. You know that as a patient. But whoever you’re sitting in front of is not going to know that.

And there are two reasons for that. One is you don’t look like that. Most of our patients – whatever this is, I’m going to put this in big air quotes, so in case someone’s not watching this and they’re only hearing, I’m putting air quotes. People say to my patients, “Wow, you don’t look like a cancer patient.” Whatever that means, right? So, most of our patients don’t have their hair falling out, etcetera, etcetera. So, there’s that aspect of it, the visual education part of it.

Then there’s also the part, which is a lot of these symptoms burdens are not obvious on the physical exam. You cannot tell by talking to someone or looking at them if they have night sweats, bone pain, even itching, any of these things. Fatigue. You can’t tell if someone has fatigue most of the time unless you ask them. So, this is one of those where shared partnership in decision-making is not just a generic phrase. This is important.

I would say that for a patient with an MPN, the MPN symptom burden – the questionnaire, the 10 questions that we now have settled on – that can tell so much more or as much as the physical exam or the blood counts.

So, it’s imperative. It’s not just a luxury. It’s imperative. And if the patient themselves is unable to speak up, then if the advocate or caregiver or loved one can, if that person is available.

The other point I would say to this is that oftentimes the symptoms can precede – they can come before laboratory changes, physical exam changes, all these things. So, a constant, constant communication, “Hey, I was playing 18 holes of golf last year.”

“Now I can’t even get out of bed.” Hello? That tells you more than almost anything you can read on a piece of paper. So, you, as always, are spot on with what you said. And this is the case where people say, “What can I do to help my care?” This is it. Speak up, speak out. It’s your body, it’s your life, make sure you feel empowered to do that.

How to Engage in Your MPN Treatment Decisions

How to Engage in Your MPN Treatment Decisions from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) patients engage in their treatment decisions? Dr. Naveen Pemmaraju shares advice for taking a more active role to empower yourself to receive MPN care that’s best for you.

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju, here.

See More from Engage

Related Programs:

What Are the Goals of ET, PV, and MF Treatment?

What Are the Goals of ET, PV, and MF Treatment?

MPN Treatment: What Is the Role of Biomarkers?

MPN Treatment: What Is the Role of Biomarkers?

What's Your Role in Making Myelofibrosis Treatment Decisions?

What’s Your Role in Making MPN Treatment Decisions?


Transcript:

Katherine Banwell:    

Lately, we’ve been hearing this term “shared decision-making,” which basically means the patients and clinicians collaborate to make healthcare decisions. And it can help patients to take a more active role in their care. So, I’d like to get your thoughts on how best to make this process work.

Dr. Pemmaraju:         

This is a passion area to me. I think this is so important that  you bring this out. I think a generation or two ago, Katherine, it may have been common for there to be more of a one-way monologue, if you will, doctor to patient, and that may have been the majority of the conversation before.

I don’t see it that way anymore, and most of my colleagues don’t either. I think it should be a dialogue, as you said. It should be a back-and-forth communication, one that learns and evolves over time as any real relationship would, right? Outside in the real world. So, I think that’s important. Number two, I think trust needs to be earned, not just given.

So, that means patient and physician, and really the physician team – so, all the other members of the team – building that trust over time through frequent communication, visits, all of this. And then, finally, I think the key here is that a lot of patients always ask, “Hey, what can I do on my own?” I’ll tell you what you can do. You can be involved and read and empower yourself if you’re able to. If you’re able to and you can. Many may not be able to due to their illness or for other reasons.

But if you are able to, I think it’s great to read online. There, I just said it. Let me repeat it to make sure everyone heard that. I want you to read. I think it’s fine. Consult Dr. Google. What’s the worst that happens? The worst that happens is you find misinformation. Well, don’t keep it to yourself, right? So, Google, look up things, go to social media, see what experts in your area are talking about, go to Facebook, go to the patient groups. But remember, everyone’s case is different. Someone else’s is different from yours, and yours is different from the next. So, gather information like a sponge.

Formulate it, synthesize it in the way that only you know how to do, bring some notes, and then talk about it with me at the next visit, “Hey, I saw this on the Internet.” “Okay, great, let’s talk about that.” Or, “Hey, this new formulation of interferon is coming.” “Great, let’s talk about it.” So, gather information, sort out signal from the noise with your healthcare team. Sort that out and then move on, move on, move on. So, I think these are some of the aspects of what’s called shared decision-making. No longer a monologue, one-way street. Let’s have a dialogue, let’s have a partnership, let’s figure out a way to empower each other in this journey.   

I’m a big fan of patients being empowered to ask anything that comes to mind. And again, that’s why I love this discussion because maybe there might be some people out there who are shocked, frankly, at what we’re talking about here. I think it’s great to do what you said. Yes. I think do your research, online or otherwise. Come up with a list of questions. Bring – if you’re able to, of course. If you have the ability to, bring one person with you. Or nowadays, on the telehealth, we put one person on through the phone during the pandemic time.

And then – yeah. I mean, yeah, sure, just you hear about something, ask about it. The worst thing that your doctor says is, “Hey, that’s only a research test. That’s not available.” It doesn’t hurt to ask. And it may help to lead to other discussions. I think it’s also a good idea to get a second or a third opinion if you need to. There, I said it. It’s your body, it’s your life, it’s your choice. I think, yes, advocate for yourself, because at the end of the day, who else is going to do that?

Making the Hard Decision to Move Forward

It may not come as a surprise to many of you that making new changes in your life can be difficult. And it is the natural human tendency to procrastinate even when we know that taking that first step will lead to better outcomes. Indecision can be costly, physically, financially, and mentally. This new environment in which we suddenly find ourselves is a testament to the need to make fast and drastic changes as our very lives depend on it.  And we have to manage this unfamiliar ever-changing changing COVID environment for some time to come. And for those of you who are immunocompromised, they may be even higher. 

Now, let’s take a look at another life and death struggle that we are in every day that takes up much of our time, energy, and leaves us stressed. The fear of financial ruin. What I have found is that even in the best of times, we don’t want to recognize our financial weaknesses, no matter how they have come about. And there is something to be said about being careful with that information. Now with the national and global financial volatility we find ourselves in with no foreseeable bottom or end in sight, not speaking to someone about your financial concerns and addressing them can leave you in a more desperate financial situation than you may already find yourselves in.  

 

I find it challenging to help anyone who has questions they want to ask but don’t know how when they should ask, or even know what questions to ask. Let me reassure you, I am available to help you navigate your financial lives. I am an advocate for you, not the hospital, not the treatment center, not your doctor, but for you. I endeavor to help prevent and or reduce financial stress/toxicity which is the predominant concern when dealing with a chronic illness. If you feel that paying for your medications, or medical treatment bills is putting a strain on your finances, please call me. Even if you feel everything is manageable now but may become difficult in the future, call me. Don’t wait until the bottom falls out to seek help. You may have had your treatment changed as a result of not being able to go into the doctor’s office for treatment. (intravenous vs oral meds). Is this new treatment going to cost you more?  

Now that some people are beginning to be more open to seeing their doctors, a sad reality is showing itself. Some of these people who put off important follow-up visits, tests, or initial visits due to COVID exposure fears or increased costs-share burden, are finding themselves in more dire physical condition. Perhaps other illnesses have worsened or a new illness in a more advanced stage.  

Let’s not become a statistic. Having a conversation with a financial professional can reassure you that you are on the right track or reveal weaknesses in your financial armor that can be addressed. Getting in front of your healthcare expenses, being proactive in your insurance plans, and making sure your financial goals are secure is one of the most important steps to not only meeting your household financial obligations but your healthcare objectives as well.  

How Cancer Patients Can Protect Themselves Against COVID-19 Variants

The arrival of several COVID-19 vaccines is giving the people of the world hope that we can eventually move past this deadly pandemic. However, while the future is promising, we are not out of the woods quite yet. As the primary virus is seeing a decline, many COVID variants are still spreading, and while doctors are still trying to understand these strains, caution is still required.

Cancer patients need to be extra vigilant during this time as the virus is dangerous for those with existing comorbidities. This fact doesn’t mean that you have to hide from society, but you do need to show caution as you go about your days during these still-dangerous times. To assist, we have compiled some information about situations that could increase the risk of contracting a COVID variant and how you can avoid exposure.

The Current COVID-19 Situation

While we are starting to see an end to the COVID-19 pandemic, we still have a ways to go, especially with several variants making their way around the world. Researchers are still learning about the severity of these variants, but in many cases, they are more transmissible, quicker to spread, and potentially undeterred by current vaccines. When it comes to the risks of COVID with cancer, it is not completely about the disease itself but about the weakened immune system that cancer creates.

Luckily, cancer patients can get the vaccine as long as components of that vaccine are not contraindicated or the patient doesn’t have specific allergies. The only real concern is that with a weakened immune system, the vaccines may be less effective, but it is better than no vaccine at all. It is also a smart idea for caregivers to get the vaccine so they can’t get the virus themselves and transmit it to the patient.

If cancer patients leave the house, they must follow the general safety guidelines that have been recommended throughout the duration of the coronavirus, including wearing masks when in public and staying socially distanced. It is also imperative to wash your hands often for 20 seconds or more at a time. Finally, clean and sanitize the surfaces in your home to avoid excess germs.

Clean Air is Key

Although it has been around for over a year, scientists are still trying to understand the true nature of COVID-19, including how it is transmitted and what factors make it as deadly as it has proven to be. During this research, experts have found a connection between the virus and hazardous air pollutants, and when the two combine, there is a noticeable 9% increase in the death rate. The issue is that particles in bad air can carry the disease, making it easier for people to breathe them in.

There are many signs that you may have poor air quality, including a build-up of dust in vents and corners, unpleasant odors, and an increased humidity around the home that has no explanation. A couple of the most common culprits of bad air quality are mold or asbestos. In both cases, you can have professionals come out to test and determine if they pose a danger, which is a smart idea as both harmful substances are often found in the walls where they can’t be seen. You can also bring in professionals to clean out the mold.

Asbestos is a chemical that was once incorporated into common building materials such as roofing and bathroom tiles. It is incredibly dangerous because once it is inhaled and makes contact with the lungs, prolonged exposure can lead to serious issues, including mesothelioma. If you live in an older home build before the 1980s, have it inspected, and if found, vacate immediately until proper renovations take place.

Needless to say, as a cancer patient, you must be aware of the dangers and make a concentrated effort to maintain clean air within the home. You can do this by placing air purifiers around the house and enforcing proper ventilation with open windows and exhaust fans in the bathrooms.

Avoid Excess Stress

There is no doubt that this is a troubling time in your life. Coming to terms with sickness, managing your medications, and dealing with your family all at once can be especially complicated, but as much as you can, it is important to try and stay as calm as possible and avoid excess stress during this time. The reason is that researchers are beginning to see a link between chronic stress and the severity of COVID-19.

When we get stressed, our bodies develop an increased level of the hormone cortisol. When someone is under a constant state of anxiety, the cortisol levels can remain high and lead to physical ailments, including rapid weight gain, bruising of the skin, and even diabetes. These conditions can affect your immune system and make you vulnerable to COVID-19 and other dangerous conditions and diseases.

While it may be easier said than done, stress management is essential during this challenging moment in your life. You can mitigate your stress by communicating with those you love and taking time to do activities you enjoy to keep your mind off of things. Also, focus on a healthy diet and get exercise when you can, as doing so will boost your mood and keep you busy.

It is also important to be careful of the supplements you take for stress relief and ensure that they don’t conflict with your cancer medications. For instance, many people take medications like Zantac to fight the gastrointestinal issues that can come from stress. However, Zantac has been found to create N-nitrosodimethylamine (NDMA) in the body, which is a dangerous carcinogen that has been known to lead to other forms of cancer. It is a smart idea to speak to your primary oncologist before trying other medications.

As someone on the journey of overcoming cancer, it is especially important to protect yourself against the dangers of COVID-19. By being aware of the risks and making smart decisions, you will get through this and see the light at the end of the tunnel.

#patientchat Highlights – Are You an Empowered Survivor?

Last week we hosted a “Are You an Empowered Survivor?” #patientchat with Alicia Staley (@stales). The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Use What Resonates with You


Some Language Reinforces the Idea That Patients Have More Control Than They Do


What does resiliency regarding your mental and emotional health look like to you? 


Full Transcript

Interview with NORD’s Rebecca Aune

Leading up to the Living Rare, Living Stronger NORD Patient and Family Forum on June 26th – June 27th, we interviewed NORD’s Director of Education Programs, Rebecca Aune.

1. Please tell us about yourself and your work at NORD.

My name is Rebecca Aune, and I am the Director of Education Programs at the National Organization for Rare Disorders (NORD). I lead the Educational Initiatives department, which oversees NORD’s education programs for health care professionals, patients and caregivers, and the Students for Rare network.

2. What specific challenges do you see that affect patients in the rare disease community?

Millions of people living with rare disease are currently on or have lived through a long and arduous diagnostic odyssey to get to an accurate diagnosis and “name the beast.” Identifying a specialist that understands one’s rare condition, research being conducted to better understand it, available treatments and treatment guidelines if there are any, and who will help make appropriate referrals for other care and services can also be challenging and overwhelming.

3. What can be done to overcome these challenges?

Educating patients and caregivers to be their own advocates, to know their rights, and be part of decision-making process alongside their care team can help rare patients overcome these challenges.  Weathering these challenges also requires taking care of both mental and physical health and finding a support system, which are key components to our work at NORD to help those affected by rare disease live their best lives while we fight for better treatments and cures.

Simultaneously, we provide accredited continuing medical education to equip health care professionals and trainees with the information they need to shorten the timeline to diagnosis and improve patient outcomes. Reducing and overcoming these challenges requires a whole-of-community approach.

4. What are some resources available to help patients impacted by a rare disease?

NORD is an umbrella organization with more than 330 member organizations advocating for communities of people living with rare conditions. A newly diagnosed patient may not be aware that there is already an organization working on their behalf alongside NORD, and connecting with others living with one’s rare disease can be a great starting point.

NORD has reliable reports written by experts explaining rare diseases available on our website. Additionally, for many conditions, we have a short video explaining the disease in the NORD Rare Disease Video Library. We also have a host of webinar recordings on a variety of educational topics available on-demand.

The Living Rare, Living Stronger NORD Patient and Family Forum offers a full weekend of opportunities to meet and learn from others living with rare diseases who will discuss a variety of topics, participate in wellness activities, join a discussion group to chat with others, and tune in to the Rare Impact Awards show to celebrate leaders in the rare disease community.

5. What do you wish everyone knew about rare diseases?

While each disease classified as “rare” may affect fewer than 200,000 people in the United States and some diseases are considered “ultrarare,” collectively, rare diseases are not rare! It is estimated that more than 25 million people are living with a rare condition in the United States alone. We all seem to know someone living with a rare cancer, or spina bifida, or multiple sclerosis, or narcolepsy, or restless legs syndrome, or have heard of Duchenne muscular dystrophy. Community support and awareness are critical to the present and future of the rare community.

6. What are you looking forward to the most during the 2021 Living Rare, Living Stronger NORD Patient and Family Forum?

We have a stellar faculty of speakers that came together to discuss relevant issues affecting the rare disease community, including parenting a child with a rare disease; aging with a rare disease; working while living with a rare disease; navigating health insurance, social security disability and patient assistance programs; getting involved in rare disease research, and more. I think the content offers variety and a little something for everyone. As well as education, the Forum offers entertainment beginning with a kickoff concert by Red Grammer on Friday, June 25 and closing with a Broadway performance during the Rare Impact Awards on Monday, June 28.

7. How can people register to attend the Forum, and when is the last day to register?

People can register for Living Rare, Living Stronger NORD Patient and Family Forum featuring the Rare Impact Awards by visiting https://rarediseases.org/living-rare-forum. The kickoff concert is on Friday, June 26, and programming begins on Saturday, June 27. However, if you cannot attend the conference live, you can register and access the content on-demand for an additional 30 days after the forum.

8. What will attendees learn about and experience at the event?

Attendees will be experience general sessions on a variety of topics, including building resilience, the sibling experience, examples of patients partnering with health care professionals in their care, and an opportunity to hear about cutting edge research being conducted in rare disease. Additionally, attendees will be able to select to attend breakout sessions according to their interests. Wellness activities such as a meditation sound bath and chair yoga will be offered, as well as kids’ activities each day provided through Project Sunshine’s TelePlay program. Also, participants can tune in with their family and friends to entertainment opportunities such as the kickoff concert by Red Grammer and the Rare Impact Awards show. The forum is open to interested members of the press as well.

9. Are there opportunities to meet and connect with other rare patients and caregivers?

A variety of live discussion group opportunities will be offered where attendees can go meet others and discuss topics such as getting involved in rare disease advocacy, living undiagnosed, rare despair and bereavement, being the parent of a newly diagnosed pediatric patient, being a teen living with rare disease, and much more. Attendees can meet other members of the rare disease community in one-on-one meetings on the conference web platform. Kids can have fun and meet other kids through Project Sunshine’s TelePlay program, offering virtual activities for kids ages 5-9 on Saturday, June 26 and 10-14 on Sunday, June 27.

10. This Sunday is Father’s Day, are there any key sessions in the Forum you’d like to highlight for our rare community fathers or parents?

In general, there are several topics that I think could be very helpful for an adult living with a rare disease who is a parent – or for parents of a child living with a rare disease – including, but not limited to: Shared Decision-making with Your Care Team, Getting Involved in Clinical Research, Debunking the Myths of Palliative Care, and Finding Your Community and Building Your Support Network.

If the father in the family is the patient, we have a discussion group for Rare Men that may be helpful.

For fathers in families living with a genetic/heritable condition, the breakout “Rare in the Family” may be a helpful resource.

If a father has a child living with a rare disease who has a sibling(s), the plenary session about The Rare Sibling Experience may help to understand some sibling perspectives and considerations.

If a father has a child who is still undiagnosed, there is a discussion group on Saturday, “Living Undiagnosed: The Endless Diagnostic Odyssey.”

Also, these discussion groups will bring parents of a child living with a rare disease together: “Parents of Newly Diagnosed Rare Pediatric Patients” on Saturday and “Parenting Rare Children” on Sunday.

For a bereaved father or father experiencing anticipatory or ambiguous grief, we offer a Breakout session on “Coping with Grief and Anticipatory Grief.” We also will hold a live discussion group on Saturday about “Rare Despair and Bereavement.”

11. How do you see the rare diseases field changing moving forward? What are the next big educational opportunities?

We hope to continually see more and more treatments approved each year, and we hope to see the scientific community find cures for rare diseases. We anticipate much to come in gene therapy and gene editing, and advancement in treatments due to data sharing. NORD will continue to encourage patients to participate in registries, natural history studies, bio banks and clinical trials. As an organization, NORD will continue to move forward with educating patients about their rights and how to manage their health and cope with the stress of living with serious and chronic illnesses.

12. For someone just learning about NORD or a rare disease, what’s the best place to start?

NORD’s Rare Disease Database provides reliable information about rare conditions written by experts. Also, finding your community is important to find specialists, learn about research, and find support. NORD’s Organizational Database is a great place to start. We also are offering a session at Living Rare, Living Stronger called “Finding Your Community and Building Your Support Network.

How Can CLL Patients Get the Best Care No Matter Geographic Location?

For chronic lymphocytic leukemia (CLL) patients, treatment access has been limited for some Black, Indigenous, and People of Color (BIPOC) patients, non-native English speakers, and those who live in rural areas due to lack of access to technology devices, stable Internet access, and other socioeconomic factors. And though more needs to be done to improve understanding of racial variances in CLL biology and other outcome factors, the COVID-19 pandemic has actually brought about some unexpected changes in access to CLL treatment.

Patient Empowerment Network is working to help improve health outcomes for underserved CLL patients through the Best CLL Care No Matter Where You Live program. Let’s take a look at key learnings from a powerful self-advocacy vignette to advice from an expert panel with the goal of helping CLL patients on their health journeys to gain confidence around treatment decisions no matter geographic location.

CLL Patient and Care Partner Advice

Cancer patients and care partners may encounter some obstacles to patient care and access to clinical trials. But a variety of technology, language, patient monitoring, and support resources have emerged to aid in patient care including:

  •  Telemedicine options including televisits via smartphones, tablets, and computers
  •  Patient portals for requesting prescription refills, reading test results, and scheduling appointments for cancer care
  • Translation services via an in-person interpreter, remote interpreter, and multi-language translation of information for cancer patients
  • Remote monitoring devices for blood pressure, heart monitoring, sleep tracking, and more
  • Online patient support resources including cancer treatment information and online patient support groups

According to Dr. Kathy Kim from UC Davis School of Medicine, “..so there’s been a huge upsurge in the number of hospitals and clinics and practices that have been able to implement telehealth with their patients. But there are other tools that again, have been in development that are now starting to take off under the last year, and those are remote patient monitoring devices, these are either specific medical devices, like blood pressure machines, glucose meters, some heart monitors, sleep monitors…devices that check your oxygen saturation. So, there are many medical devices that are for use in the home, that are either covered by insurance or people can buy them at the drugstore, and what has really come about this year is the ability to connect the data from the device you have in your home to your provider, so that’s been in place, but we really haven’t implemented it very many places, and now lots of places are allowing that connection to happen. So, the patient can use the device in their home and get it connected to the and have it sent to the hospital or to their doctor, so their doctor can be watching the data and also monitoring them, so that’s one really wonderful piece of progress that we’ve had in the past year.” And additional tools to help improve patient care will continue in the future.

CLL Patient Self-Advocacy Experience

Sharing the patient perspective, CLL patient William Marks discusses some of the details of his patient journey. From his diagnosis to getting connected to Dr. Awan via televisits during the COVID-19 pandemic, William shares the value of getting a second opinion, lifestyle improvements he made, and things he found helpful in taking charge to get the best CLL care possible.

William took charge of his care when he didn’t feel comfortable with his first opinion, “I had an oncologist, they wanted to do a treatment on me that I really didn’t agree with, and I found a doctor who first started out saying, “We don’t want to do this right now, we just want to kind of see what happens” and then to me, it turned out successful.”

And William took a proactive approach to his care, “I started from the beginning, I started doing everything. I started reading everything I could, I started trying to research everything, I changed my eating habits, I lost weight, I did everything I could personally, but I knew that the CLL that I had, I could not conquer by myself and alone. And so that’s when I knew, you can do everything you can, you can take all the herbs and supplements and everything you can, but then CLL is something that you really like you said, you need someone who specializes in it to know…but I’m really doing real well after six years, and I do believe that Dr. Awan saved my life.”

If you or a loved one is a CLL patient, tune in to the webinar replay to learn helpful advice for improving access to the best and latest CLL treatments no matter location or circumstances, receiving free CLL remote consultations, taking an active role in your care, working as a team with your CLL specialist, and supporting the CLL patient journey.


Resources

Increasing Treatment Access for Every CLL Patient No Matter Location

How Can CLL Patients Avoid Pandemic Challenges Without Compromising Quality of Care?

What Multi-Language Technology Innovations Are Available for Cancer Patients and Families?

What Key Questions Should CLL Patients Ask About Digital Tools Born Out of COVID?

How Can CLL Patients Mitigate Distance and Technology Barriers to Care?

Sources

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Empowered Patient and Care Partner Ask the Expert: Addressing COVID-19 Concerns

Empowered Patient and Care Partner Ask the Expert: Addressing COVID-19 Concerns from Patient Empowerment Network on Vimeo.

With COVID-19 infection and vaccine concerns, what are the key points for cancer patients and care partners to know? Expert Dr. Shaji Kumar from Mayo Clinic shares valuable information about protective measures against COVID-19 infection, vaccine side effects and effectiveness, working toward herd immunity, and cancer research benefits that have emerged from the pandemic. 

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Transcript:

Mary Leer:

My name is Mary Leer. I’m the Breast Cancer Network Manager.

Jeff Bushnell:

And I’m Jeff Bushnell, the MPN Network Manager at the Patient Empowerment Network. I’m a caregiver.

Dr. Shaji Kumar: I

’m Shaji Kumar, a hematologist at Mayo Clinic.

Mary Leer:

Jeff and I are proud to be part of a strong team of compassionate volunteers, helping health communities adapt to the realities of living with a serious illness, living with cancer during a pandemic certainly presents another layer of challenges. So, Jeff and I will drill down to ask the important questions from the community. For this production, Empowered Patient and Care Partner Ask the Expert, we are very lucky to be joined by noted expert, Dr. Shaji Kumar, a consultant in the division of hematology at Mayo Clinic. Thank you for taking the time to join us, Dr. Kumar.

Dr. Shaji Kumar:

Thank you for having me, Mary.

Mary Leer:

Let’s start with the top of mind questions for so many of us right now, what should every patient and care partner facing a cancer diagnosis know during the pandemic?

Dr. Shaji Kumar:

I think it’s a challenging time for everyone, and it’s obviously more challenging for patients dealing with cancer at the same time, thankfully, we have a vaccine at hand that will certainly make the situation a lot better, but I think from a cancer standpoint, I think what we need to keep in mind all the precautions we talk about in terms  of social distancing, masking, hand washing and all those measures apply equally to everyone, even more so to patients with cancer. And the reason why we say that it’s even more important for several reasons, one, and we continue to learn more about the pandemic and its impact on cancer, one thing that has become clear is that patients with underlying conditions including cancer are to other folks were more affected by the infection, more likely to have more severe interactions and poorer outcomes. Now, patients with cancer appear to be at a higher risk of getting the infection and then they get the infection having a more serious disease. Now, it’s hard to know how much of this is also related to the fact that patients with cancer often have to go into the hospital or the clinic, and hence are more likely to get exposed to the infection than someone who is able to just stay at home.

So that’s one thing. And second, we know that the ongoing treatment for cancer definitely suppresses the immune system, and hence places people at a higher risk of the infection itself. Now, even patients who have their past history of cancer, this appears to be some increased risk, even though this is a little bit, unclear how much more it impacts those individuals. But I think the bottom line is keep the awareness that you might be at a higher risk of getting the infection, more serious infection, and the need to take those precautionary measures in a more strict fashion, and getting the vaccination when you can get it is all things that one needs to keep in mind.

Jeff Bushnell:

Well, that’s wonderful, Dr. Kumar, you mentioned the vaccinations, I am a strong proponent of that, I happen to have been involved in the Moderna vaccine trial, which is and still enrolled, they’re doing the follow-up. I guess they’re checking the last time I was in last week, they took 8 vials of blood, I think they’re checking to see whether I have the antibodies and how long it will last, but I was very happy with the way it was conducted, they were very forthcoming with information.

It was very interesting. And out here in San Diego, where I am, we have done pretty well as a county in vaccinating people and Summer got the vaccine as well with myelofibrosis and she feels a lot better. But for cancer patients who have tested positive for COVID, are there notable consistencies amongst that group of people, and have we learned anything from those patients yet about maybe their chances of getting it more, or their reaction to it? That kind of thing.

Dr. Shaji Kumar:

We know that there’s a wide spectrum of reaction to the vaccine. The majority of the people would not notice any symptoms related to that except for some pain at the injection site.  Not there are some folks, number of people who might have more or just myalgia, muscle pains, just feeling fatigue, some low-grade fevers, just feeling blah for 24-48 hours, and it seems to be not too uncommon. The reactions to the vaccine in terms of the side effects or the symptoms, there doesn’t appear to be much of a difference between cancer patients and normal individuals. Now, in terms of the efficacy of vaccination, you just mentioned Jeff, about you being checked for the antibodies, obviously, that is something that we hope will happen to all individuals who get the vaccine, but we know that is not going to be the case, there’s going to be a wide variation in terms of how strong an immune response one might develop against vaccines. Now We know from, not necessarily the COVID vaccine, but the vaccinations that have been used in the past, whether it be flu vaccines or pneumococcal vaccines, that we all get patients with cancer or patients going through treatment for cancer that can suppress the immune system, tend to have a lower response. But again, that varies quite widely from patient to patient now, there are some vaccines where we can clearly look at the antibody response and say, “Oh, this is not adequate, and we need to maybe give an extra shot.”

We just don’t have that information for COVID vaccines yet. So the way I would look at it is, even though the response to the back in a given person might be less than what we eventually would identify to be optimal, it’s likely to be better than not having to see the vaccine, so I would encourage obviously, everybody to get the vaccine. Now, what about someone who has already had an infection, what would be the response? Should we vaccinate those people? We certainly should. Again, we don’t know the immunity from a natural infection, how long would that last? That is still something that is unknown, and the vaccination dose is likely to make the responses more relevant and more durable, so I would recommend the vaccines for everyone. We don’t think one vaccine is any different from another in terms of your underlying cancer or lack thereof. So in terms of assessing for the antibodies, there is no clear guideline in terms of what one should anticipate from  the vaccine, so there is really no way to say, check the antibody, and they can go ahead and get one more dose or you’re fully vaccinated. So I think the bottom line is, get the vaccine, you don’t need to necessarily test for a response, and then we continue with the usual measures for prevention.

Jeff Bushnell:

And so what would you tell the… I guess that’s pretty much the answer to the next question I had. What would you tell the patients who are in active treatment and who planned to get the vaccine just continue as normal after they get it, with all the appropriate precautions?

Dr. Shaji Kumar:

Yeah, no, I think there’s one other important aspect, Jeff, to that question you just raised, which is, what is the right timing to get vaccinated, the vaccine, and that is a question that often comes up. So patients who are not getting active treatment, there is obviously no concern whenever the name comes up, go ahead and get the vaccine. And the second is what if someone is actually getting active treatment for their cancer, is there any role in terms of trying to find the vaccination, with respect to the doses of the medications and for most of the treatment we are using for cancer, there are no clear guidelines in terms of the when they can get the vaccine, that having several guidelines that have been put out by different organizations. The bottom line is, if there is an ability to space out or give sometime between the vaccine and the dose of the medication, do that, don’t modify your treatments, just so that you can get the cross at a particular time. The only place where we would recommend specific guidelines within the context of somebody who may have had a bone marrow transplant or had some other kind of cellular therapies, in those contexts, we often recommend that you wait for a couple of months after the stem cell transplant, before we get the vaccines. But for all the other treatments that we are getting right now, we want to just within the schedule of the treatment that’s already on going, try and get the vaccine in between two doses.

Mary Leer:

For those who have been vaccinated and are living with cancer, you spoke to that in great depth, but I’m also wondering about people that are perhaps in post-treatment and let’s look at social distancing measures or other restrictions, are those different for patients versus the general population?

Dr. Shaji Kumar:

No, I think the proportions are the same, I think the social distancing and the masking should continue to be observed the same way, and I think the only other word of caution I think may be particularly relevant for the cancer patients would be, again, trying to avoid again those kind of being outdoors and larger groups of people, even if when you maintain the social distancing, try and not do that. The outdoors are probably a little better than smaller indoor gatherings, and it’s mostly the common sense proportions, and I think the cancer patients are probably more tuned to this because they have been following some of those things even before the COVID came on and post-vaccination, I would recommend that these steps don’t change at all, partly because we gain for a given person, we don’t know how robust the immune response that those patients have after the vaccination and the lack of good testing to say that, okay, now you’re fully vaccinated, your response is great, you don’t need to worry about getting infected.

Mary Leer:

Wow, thank you so much. That’s so helpful. I’m going to shift to vaccine hesitancy. This is an important topic for many. Drug development takes years, sometimes decades. Can you speak to those who might be hesitant about the speed of vaccine development around COVID. I’ve heard this often from other people saying, “Well, they develop this so quickly, how can we trust it?”

Dr. Shaji Kumar:

Yeah, no, I think those concerns are quite valid, I think vaccines have always been a very controversial topic and not just COVID vaccination but even for childhood vaccinations. There have been long-standing concerns that some of those vaccinations may be responsible for some of the issues that we see in the children and even in the late adulthood. I think what we really want to get across is, again, taking that question apart, and there are multiple different aspects to it, one is the whole concept of how we created the vaccine so quickly, we kept telling everyone from the time that it started that it takes five to 10 years to develop a good vaccine, and now we have something in a year, so obviously that raises concerns amongst people. I think it’s just a testament to how far technology has come. In the past, we had to isolate the protein and use that protein to develop the immune response, and what has been really unique about the COVID situation has been the Pfizer vaccine and the Moderna vaccine, both of which uses a new technology called the mRNA-based technology. And this is something that has been developed over the past decade to decade-and-a-half, and I would say this is a platform that was perfect, just waiting for the right opportunity to come along.

And the COVID situation really presented that. And even though it was the speed with which this was developed, is just because the technology has come along so much and we can actually do that, and the second is how fast the clinical trials have been done, and I think that speaks to, again, the infrastructure that they have been developed over the years to rapidly develop and implement a clinical trial. So the clinical trials, both Pfizer and Moderna trials had 40 to 50,000 people enrolled in a quick phase and the community transmission that was happening at a very high rate. We could get these trials done in a very rapid manner, so the patients or the people who enrolled in this clinical trial the fact that they were not getting infected could be determined in a much, much faster fashion than what you would have done in the past with any of the other vaccines. So I think the technology is robust. The [COVID]  trials are very well-conducted and the end point in terms of efficacy has been very well-determined or very accurately determined.  And given the size of these trials and the number of people who have been a goal, I think we can feel fairly confident that the risk associated with this vaccine is pretty low, so you can argue that one of the risk of a particular side effect is only 1 in 80,000. So maybe to the 40,000 people enroll in the trial, they may not have adequate numbers of that and that was certainly a concern when they started vaccinating. And we just know a couple of days ago, there was a publication that looked at almost like 63 million vaccination doses that have been given, and overall the risk of vaccine related side effects have been very, very minimal.

So I think that should also boost our confidence.

But on the other hand, we all heard about what would happen with some of those vaccines and the blood clots, and I think that even though…yes, it is, as it is a risk. It is a very, very small risk. And the fact that you were able to identify them right away again, I think tells us that should there be rare side effects, you’re going to find it, and we are going to figure out the mechanics of why those side effects happen. And we’re going to figure out how to avoid those things.

So, I think the information flow is so fast and all the data related to vaccines and the side effects are being captured in a real-time fashion that we would be… You’d immediately be of avail of side effects should that happen.

Mary Leer:

Wow, that’s so reassuring. Thank you.

Jeff Bushnell:

Another question kind of along the same lines, doctor is the last few days, especially, it’s Vaccine hesitancy has really become sort of the issue to the potential of achieving herd immunity, and how can everybody in the medical community, you guys are facing those stuff in a different way, but the average person, how can we help overcome hesitancy and increase the people’s trust in the vaccine, and also increase the equitable distribution amongst all populations? Some populations are hesitant to take it, others have distance problems for being able to get it. What can we do to sort of push ourselves over the hill to get to that herd immunity?

Dr. Shaji Kumar:

Yeah, no, You bring up a very important point, and I hope we are in a much better place than many parts of the world right now because we have one of the few countries where a significant proportion of the people have been vaccinated, but we are not quite at the point where we can claim herd immunity, I think we still need to continue to pursue this, and I think the ideal goal is to get everyone who’s eligible to get a vaccine vaccinated. Now, you bring up some of the very important points, because even though vaccine hesitancy is a real problem, the underlying reason behind this is manifold, and the only way to tackle that is we have a multi-front approach that will take into account what is the reason behind it.

So for the people where it’s hard to get to populations which can live in far from the areas, it may be more the ability to use those vaccines, which does need the complicated storage, for example, the J&J vaccine. You only need one dose. It’s easy to store. So that may be one of the approaches to be taken. And people who believe that this is a vaccine is going to create side effects, or it’s part of some grand scheme to introduce a variety of things. I think it’s a person of education, and I think they really need to tell them what can happen with. Not really just to them, but the fact that if you continue to allow these infections to proceed on stuff, there are going to be increasing numbers of mutations, and that in turn is going to make the pandemic much more difficult to control in the long run. So it’s totally an individual benefit, but it’s on to the society’s benefit to have everyone be vaccinated. And then definitely, I think knowing that should anything unto it happen, there’s going to be medical care that’s going to be available to these individuals, and I think that’s also an important point, so who are near and dear to them is going to be the key thing.

Mary Leer:

Here’s a question many cancer patients are unclear about if antibodies are present or if I have tested positive before, there’s a wondering, “Should I still get the vaccine?”

Dr. Shaji Kumar:

Yeah, I know the recommendation right now is to go ahead and get the vaccine, partly because we don’t know the natural immunity from the infection, how long does it last. So it seems like the antibodies can start to wane off the infection. And again, we don’t have a lot of data on it, but it looks 3 to 6 months, it might start waning at least to the level that they can detect. Now, whether that is sufficient or even the undetectable levels is protective against a future infection, we don’t know. There have been some reports of people getting a second infection even though they have been infected before again, scattered reports, we don’t know how widespread that phenomenon is going to be, so given all these, I think the current recommendation would be to go ahead and get vaccinated. We generally tell people to wait for two to three months after the infection to go ahead with the vaccination.

Mary Leer:

Alright, thank you

Jeff Bushnell:

Should people… Is the idea of pre-screening, especially for cancer patients, maybe who may be at risk, I guess, to see whether they have antibodies or whatever, be an effective thing to decide which vaccine they should get? or I know, as I say, I was in the trial and they were very forthcoming to the participants with what the numbers were, and I was flabbergasted at how effective the vaccine was, it was just amazing to me, and that kind of information that I guess is not available publicly maybe it should be. Does it help to decide which vaccine you get? All I hear on the TV is get the first one you can. What are your thoughts on that?

Dr. Shaji Kumar:

Yeah, no, I completely agree with you. I think even those numbers may mean… You look at the Moderna and the Pfizer trials, and they said, now over 90 percent effective. Look at the AstraZeneca trials, you know, it’s like they recorded 70 to 80, 85 percent, and the J&J about 80 to 90 percent effective. Do these numbers mean much? It’s really hard to know, I think, partly because they have been tested in, again, different countries, different times, as the virus was continually changing its characteristics. So it does it mean… So one could argue that maybe the vaccines that were tested later on when this will be some of the mutants were already there might be more effective, but we don’t know.

I think at the end of the day, 80 versus 90 is not something we would decide a vaccine on. The fact that, yes, if something was only 10 percent effective versus 90 percent, it’s a probably different story. So based on the numbers we have seen, I would say whatever you can get to first, if you don’t want to get jabbed twice, maybe you go with something that goes, it’s only one dose, but that may be the only distinguishing factor here, but nevertheless, I think we have to just get the vaccination, the first vaccine that we can get our hands on.

Mary Leer:

So let’s hope there is some good that comes from the bad. Are there any noticeable trends born out of the pandemic that will be or could be a benefit to the future of cancer care or research?

Dr. Shaji Kumar:

Mary, That’s a very important question, and I think we always learn from adversity, and I think this is going to be no different. I think, especially when the pandemic hit back in the spring of last year, we all had to think fast on our feet to figure out how best to continue to tell about the best care for the cancer patients without compromising the care in any way. And we knew that bringing the patients back into the clinic at the same rate we did before the pandemic would expose them to significant risk for infection, so how do we continue with treatment? There have been very different things people have tried…one of them is to try and get the medications to patients at home. If they are on IV medications, they can be changed to something that’s comparable that can be given by mouth. We already did that for some patients. For some patients who used to come to the clinic very often, so we figure out is there a way for them to get some of those testing done in a clinic much closer to home, so they can avoid the travel, they can avoid being in a bigger city, they can avoid being in a bigger institution, again, reducing the risk of exposure, and then you look at those numbers and then decide on the next course of treatment. We converted many of the clinic visits to video visits. Nothing is as good as having the patient right in front of you, but this is the best we could do under the circumstances.

And I think that helped. So I think the clinical trials was a big problem because in many of those trials were done in a very rigid fashion with very little variability allowed within the protocols. And everybody loosened from the clinical trial sponsors, the pharmaceutical companies, the institutional review board, the investigators to try and build flexibility into those clinical trial structures to allow patients to continue to be on those trials, many of which are important and both helping. So what does that mean for the future? I think the video visits are here to stay, I think we will continue to utilize that and bring patients back to the clinic only when it’s absolutely needed. I think the clinical trials will have in-built flexibility so that patients can enroll on clinical trials remotely, they can potentially be given some of those medications at home, maybe it would be something where we would check into the patients on a regular basis to make sure things are proceeding in the right way. I think there are increasingly technologies that will allow the patients to communicate in real time with the care team and also provide many of the data that we need through iPads or iPhones, Apple watches, whatever we end up using.

So that is that I think that technology will rapidly take off in the next few years, I think. So I think a lot of the care of the patients with cancer in general, and particularly cancer patients, I think is going to look very different five years from now, because of all these things that we have always thought of and we thought, “Yeah it will take time to implement, it’s difficult.” Now we figure it out in a year. We can do a lot of those things.

Mary Leer:

Yeah, thank you.

Jeff Bushnell:

For the final question, you’ve given tremendous information here, Dr. Kumar w What’s the final takeaway for the average cancer patient and caregiver, how to get through this? What’s your bottom line for us all?

Dr. Shaji Kumar:

Bottomline is, I think Your cancer treatment comes first, let’s not compromise on it, let us do it as safe as we can by observing all the instructions in terms of social distancing, masking, avoiding gatherings, getting vaccinated, and make sure you keep connected with your care team. You don’t have to be in the clinic to do that. There’s a variety of different tools, I think every hospital has options to either through their medical records to message their care team, or set up video visits and so forth.

So we want to be in a state where it was before the pandemic in terms of your communications, but use the technology, so we can decrease the risk of exposure without compromising the quality of care.

Mary Leer:

Alright, well, thank you so much, Dr. Kumar, that you have just given us such valuable information, and I want to thank Jeff as well, and the Patient Empowerment Network for putting this together.

Jeff Bushnell:

Thank you, Dr. Kumar, appreciate it.

Dr. Kumar:

Thank you, Jeff.

#patientchat Highlights – Being Intentional With Your Mental Health

Last week we hosted a “Being Intentional With Your Mental Health” #patientchat. The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Just a Bad Day


“You are Always Enough”


What does resiliency regarding your mental and emotional health look like to you? 


Full Transcript