Managing Medical Mistrust: Creating a Healthy, Trust-Based System

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If there’s anything “positive” that has come out of the pandemic, it’s that it has brought to light the many disparities that are still prevalent in healthcare. These have translated into disparities in the Covid world based on where people live, their education level and income, and their race, among others.

The same can be said about oncology specifically. Health disparities in the diagnosis and management of cancer can be described as being “higher cancer death rates, less frequent use of proven screening tests, and higher rates of advanced cancer diagnoses.” This was (and still is in some areas) exacerbated by the pandemic, where patients either opted to delay treatment or were told they couldn’t undergo treatment because of the surge of Covid patients in clinics and hospitals. Additionally, there have been delays in patients undergoing screenings for cancers, including colon, cervical, and breast cancers, especially among those of racial and ethnic groups, who already had a decreasing level of access to healthcare services at the beginning of the pandemic.

Undoubtedly, this has increased the level of mistrust in the healthcare system. How are patients supposed to get the care they need? How do providers increase their level of trust with their patients who are already at a disadvantage and have a greater risk of becoming infected with Covid or any other disease? Below are ways the healthcare system can bring patients and providers together to create a healthy, trust-based system:

Providers should:

  • Establish empathy and understanding of patients’ needs and values (and reiterate them back to the patient)
  • Offer different treatment options, if available. Be willing to discuss the pros and cons of each option, including recommendations
  • Discuss clinical trials as a treatment option, if applicable. Yes, healthcare is a business, but instead of a provider seeing it as “giving up” a patient, understanding that the patient’s health and well-being comes first is much more important
  • Work with the patient’s insurance, if necessary, for prior-authorizations on medications and procedures
  • Be honest with your patients. Gauge and/or ask about the amount of information they can handle when providing a diagnosis
  • Tell a patient if they don’t know something and/or if errors have been made. Being vulnerable and transparent in this regard demonstrates that you’re human

Patients should:

  • Be respectful of the physician’s (and other patients’) time during each appointment by bringing in a list of questions that need to be answered
  • Utilize patient portals!
  • Ask questions if unsure of anything spoken about during an appointment, especially medications
  • Be your own advocate when discussing your health (i.e. bring up why certain solutions are important to you)
  • Understand there are multiple patients being taken care of and no one patient’s needs are more or less important than another

Understanding the Oncology Care Model

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Some of you may have received a letter from your oncologist notifying you that your oncologist is participating in a program called the Oncology Care Model. It was sent out to Medicare patients who are currently being treated by this provider. This letter informs you that you still have all the Medicare rights and protections including which health care provider you see. However, if you do not want to participate in this program, your opting out will require you to find a new provider. This can be very daunting for a patient that has been getting care and have a relationship established. Therefore, I want to give a brief overview of the Oncology Care Model, (OCM).

This program was developed by the Center for Medicare and Medicaid Innovation (Innovation Center) which was established by the Social Security Act and added to the Affordable Care Act. Its purpose was to test innovative payment and service delivery models to reduce program expenditures and improve quality for Medicare, Medicaid, and Children’s Insurance Program beneficiaries. The practices participating in this program have committed to providing enhanced services to Medicare beneficiaries, which includes care coordination and navigation, and to using national treatment guidelines for care.

Because cancer is such a devastating disease and because a significant proportion of those diagnosed with cancer are over 65 years of age and Medicare beneficiaries, this provided the OCM, CMS, in partnership with oncologists, other providers and commercial health insurance plans, the opportunity to support better quality care, better health, and lower cost for this patient population. It is intended to improve our nation’s health by providing clear measurable goals and a timeline to move Medicare and the US healthcare system toward paying providers on the quality of care rather than the quantity of care that they give their patients.

OCM focuses on Medicare Fee for Services beneficiaries receiving Chemotherapy treatment and includes the spectrum of care provided to a patient during a six-month episode that begins with chemotherapy.

The benefit to the patient would include enhanced services, including

  • The core functions of patient navigation to find other patient-focused resources.
  • A care plan that that meets your needs
  • Patient access 24 hours a day, 7 days a week to an appropriate clinician who has real-time access to the practice’s medical records: and
  • Treatment with therapies consistent with nationally recognized clinical guidelines.

There is no additional cost to patients to participate in this program. Medicare will pay for the full amount of the services. There is however a survey that patients would need to participate in to provide feedback to help improve care for all people with Medicare.

To get a good understanding of this program so that you can make the best decision regarding your care, don’t hesitate to share with your treatment team any questions or concerns you may have. Visit online at www.innovation.cms.gov/initiatives/oncology-care or call 1-800-MEDICARE (1-800-633-4227).

Financial Fitness Workouts

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From PEN-Powered Activity Guide VIII: Supporting Your Support System

It seems every day we’re being bombarded with ways to stay fit. there is always a new fitness program or a new types of fitness equipment that’s supposed to give us the best bodies we can have. But with those who are dealing with a chronic illness, fitness takes on a different meaning. Not only do we need to feel our best physically, we also must be prepared in every aspect of our lives with your sight always set on your best possible treatment and your continuum of care.

I thought this would be a great time to review four of the most impactful areas you can review, reallocate, and make the changes that are most appropriate for your specific circumstance.

A good way to look at it is, in the fall we make sure we perform maintenance checkups or in our furnaces. We prepare our gardens and lawns for the upcoming spring, we check the exterior for homes for energy efficiency and we do checkups on our cars to prepare them for the winter season.

Unfortunately, few of us take the time to review the foundations of our financial lives that in fact dictate our ability to remain on treatment plans and meet all of our financial obligation. It is my hope, that everyone takes the opportunity to review at least these four areas that I’m covering in this article before the end of the year.

Medicare

First, the big one for a lot of us, Medicare. As you know the Medicare season is almost upon us. And there are changes as there are every year. If you are already a Medicare enrollee, this open enrollment period gives you the opportunity to make changes if needed. And if you have been enrolled for 12 months or less and you have a Medicare Advantage plan you even have the opportunity to replace it with a Supplemental plan perhaps with guarantee issue If you qualify. Here may be a wait period but you may not be able to get in at a later date and the coverage may be better for you.

Also, if you have an HMO plan you may be able to switch to a PPO for more plan flexibility. Review your Prescription formulary if there have been changes to your treatment. The worst thing you can do is to not review your Medicare options as there are changes every year and more plans may be available to you and the cost may be better as well. Don’t assume that the cheaper the premium the better off you are. Review your total cost. That includes the premium, co-pays, deductibles, coinsurance, and the cost of your meds as well.

Life Insurance

Secondly, review your life insurance plan. Many people aren’t aware of the benefits that insurance offers. Such as, accelerated benefit riders in the event you need access to some cash or the options of taking a loan from your policy.

Additionally, if you are still employed, on your next enrollment period with your employer see if you can add or increase your life insurance amounts. Even if you plan to retire or terminate your employment next year or at a later date the cost to take life insurance with your employer may be the only place you qualify without medical underwriting and it’s much cheaper. Also, see if your employer offer a supplemental life insurance that you can enroll in that may be portable at your termination from employment.

Review your credit to make sure there isn’t anything on it that’s incorrect. If you anticipate making a big purchase this will really affect your interest rate.

Monthly Statements

Third, as a financial advisor, I found a lot of clients would not look at their monthly statements to see how their retirement accounts such as 401k’s and investment accounts were doing. You are doing yourself a huge favor if you keep up with these no matter if the market is up or down. Speak to your financial advisor to make sure you’re taking advantage of growth, income producing, and tax efficient opportunities.

Financial Assistance

And finally, don’t assume you won’t qualify for financial assistance. The cost of treatment is expensive and probably always be. Talk to your doctor or social worker to help you uncover sources that can help you pay for co-pay, deductibles, coinsurance and other needs.

Do this before you find yourself in a financial crisis. Be proactive with understanding your illness and the anticipated change in treatments that may be available for you.

Instead of waiting for spring cleaning, take the time to do a financial review now. Go into the new year in the best possible position you can. And then, like getting a check-up on your car, do the same for your financial future every year. After all, you are worth more than a car!!

Involving Patients in their Care: The Clinical Trial and Drug Development Processes

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Patient involvement in every facet of healthcare is incredibly important in creating better patient outcomes. I believe this is especially true in the rare and chronic disease communities, including cancer. One facet that is particularly key for patient engagement is the development of drugs produced through the clinical trial process.

Clinical trials can cost millions to fund with the goal of producing a product(s) that may or may not help it’s targeted disease population. Thousands of patients rely on these trials to find a cure and/or enhance their quality of life by providing symptoms of relief. Yet many don’t know about them, and if they do, it’s a struggle to find them, much less enroll in one.

As a person who takes on many roles, including a rare disease patient and a cancer patient, as well as someone who has translated clinical trial protocols for a lay audience and now recruits for those trials, I have seen firsthand the barriers that patients face when it comes to potentially life-saving treatments. Below is what I have encountered and what we as healthcare professionals can do about it:

Visibility Into Clinical Trials

While most patients know of and about clinical trials, they are often not aware that they may be an option for treatment. Healthcare is a business, and because of this, doctors feel like they’re “losing” their patients (aka revenue) when they refer their patients. However, most healthcare organizations, facilities, etc. boast that they’re focused on patient-centered care. Patient-centered care means focusing on the needs of each patient and providing the best treatment possible even if it comes from another source.

The Language of Clinical Trials

Clinical trials are often discussed using medical jargon that is too confusing for patients to understand, especially the eligibility criteria. Patients should not be expected to learn a new language to understand the treatment process. Rather, they need resources that will help them understand if they qualify, what will happen in the trial, and how long they’ll be in the trial for.

Outcomes of Clinical Trials

A patient who had participated in a clinical trial once told me that the investigators focused mainly on whether the drug that she was receiving was treating her condition and never considered her quality of life. Quality of life should automatically be included as a measurable outcome in each clinical trial even if it’s not the main purpose.

Involvement in Clinical Trials and Drug Development

Patient centricity, as written above, has become a buzzword in the healthcare industry. The drug company, AstraZeneca, defines it best: “Putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best outcome for that patient and their family.” Are we really doing this if patients aren’t involved in the drug and clinical trial development processes?

How can patients invest themselves, and the government and pharma invest in patients, to potentially get a better ROI?:

  • Look at Patient-Centered Outcomes Research Institute’s website, whose work focuses on outcomes most important to patients and research that focuses on gold-standard randomized controlled trials, as well as observational studies.
  • Sign up for AstraZeneca’s Patient Partnership Program
  • Research articles on drug development for your disease and contact the authors
  • Engage in the FDA’s Patient Representative Program
  • Join the FDA’s Center for Devices and Radiological Health (CDHR)’s Patient Engagement Advisory Committee
  • Join the FDA’s Patient Engagement Collaborative
  • Participate and/or request a Patient Listening Session
  • Present at an Open Public Hearing Portion of an FDA Advisory Committee Meeting
  • Get involved in:
    • The FDA’s Center for Drug Evaluation and Research (CDER)’s Patient-Focused Drug Development program by subscribing to their email updates
    • A patient advocacy group and/or think tank
    • An organization related to your diagnosis that may have doctors on their Board that you can reach out to and share your story and the importance of involving patients

Find more information in this PDF created by Global Genes

Empowering One Another: Helping Your Healthcare Team Help You 

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Life is all about making choices, and I think the same could be said about cancer in some capacity. If we take the time to think about it, we have choices in: 

  • What doctor we see for diagnosis and whether we seek a second opinion 
  • How we’re treated by our doctors and healthcare team 
  • What type of treatment we receive, if we’re lucky 
  • How we feel about our diagnosis and perceive our prognosis 
  • What we do with the information we receive and the knowledge we gain 

So you see, it’s all about empowering ourselves and our healthcare team. But how do we go about empowering our healthcare team in the choices we make? Here are ways to try: 

  • Tell them about your needs, including spiritually, emotionally, physically, and mentally. How can your healthcare team meet these when: 
  • Explaining your diagnosis and prognosis: 
  • Do they sugarcoat or “give it to you straight” based on what you told them about how you want to receive the information? 
  • Do they give all the details or only the “need to know” info? 
  • Do they communicate with you in a way that you understand? 
  • Do they give you resources to further educate yourself with?

Choosing your treatment options: 

Do they give you choices based only on what they know, or do they take into consideration research that you’ve done on various options, clinical trials, etc? 

Do they help with options based on what your insurance covers? 

During the treatment process: 

  • Are they readily available (or at least within 48 hours) to answer questions? 
  • Do they explain the process as it continues (ie. next steps)? 
  • Do they check on you to see how you’re doing? 

After treatment ends: 

  • Do they explain next steps? 
  • How often to get blood work, scans, routine appointments? 
  • Do they provide a survivorship care plan? 

All of this work that we do as patients goes hand in hand with how we want to be treated by our healthcare team. As we empower ourselves, we empower them too, and there’s nothing better than a great team that’s on the same page. 

Committing to Eating Healthier Can Lead to Savings in Your Pocket Both Now and in the Future

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Have you ever eaten something that you really love but for some reason it doesn’t seem to like you back? I have. For instance, ice cream used to be my favorite desert. But sometime in my 30’s, ice cream started making me feel ill. And because of that, no matter how much I wanted it, I began to lose interest. I also started feeling better. The older I became, the more I realized that most foods containing sugar were making me feel sluggish along with some other no so pleasant symptoms. Additionally, bread became my enemy. Now I have to admit this was particularly hard. I absolutely love some hot crusty bread with pure Irish butter. Yum!!

Now I have more energy, sleep better, and have better focus as a result changing my eating habits. Another real surprise, I no longer had the body aches and joint pain I once suffered. Upon research, I found that sugar and carbs can cause inflammation. So, I also started reading labels. There is sugar in almost everything, including seasonings, ketchup, milk, breads, and so much more. And did you know that a lot of the foods you buy from restaurants are loaded with sugars and salts? To offset too much salt in a dish, sugar is added. And vice versa. So, I’ve begun to eat a lot more vegetables, and whole grains such as whole wheat, and quinoa, as well as nuts and fruit. Doing so also allowed me to explore other herbs and seasonings to add flavor. Also, being more mindful about what I ate made me think about the amount of red meat I was eating and how much I was eating out. Suffice it to say, way too much! I kept a journal of what I was spending eating out and found it added up to over $400.00/ month.

I surmised that a lot of people were in the same boat. And that this was as a country are making us obese, diabetic, have heart attacks and strokes, perhaps making us more prone to cancers, and migraines and neurological problems and learning problems and the list goes on and on. So, how does this relate to saving money? Well. Now that I’m more conscious of what I’m eating, I cook more often with better choices of food. I lean toward organic now and am limiting the amount of red meat. I am learning to shop more from the periphery of the store. In the summer, farmer’s markets are the way to go. I even have a small potted garden, which is so easy to maintain with fresh herbs, and some vegetables. These illnesses are making us less productive and we are taking more sick days from work than we probably used to take. And we are going to the doctors more often than we used to. Spending more on co-pays, deductibles and other out of pocket costs. Now that extra money saved on eating out can be directed to other needs such as medical treatment costs or other expenses or savings programs.

Now I’m teaching my 5-year-old granddaughter how to cook, raise a garden and especially understand nutrition and how to read labels. With the cost of healthcare going up more than inflation every year, I can’t imagine what the cost burden will be for her when she is an adult. In fact, in 2019, according to the OECD Health Statistics database and the CMS National Health Expenditure Accounts data, the US spends more per capita than any other comparable country on health care and related expenses. In 2019 that was $10,966 with comparable countries averaging $6,697.

That was an astounding 17% of the US GDP! And unfortunately, that doesn’t mean that we as a country are healthier. So hopefully, educating my granddaughter now, when she is young, will lead to a heathier lifestyle for her and reduce her costs of healthcare. So, if I can get heathier now, perhaps it can help keep me out of the doctor’s office and also save me money.

I shudder to think of all of the money I’ve wasted over the years buying meals that perhaps satisfied my immediate taste but all along was contributing to poorer health. In hindsight, that money could have been put to better use elsewhere. I could have felt better for most of my life if I had paid more attention to what I was eating, and my savings account could be bigger as well. I still occasionally eat out and enjoy the rare ice cream as well as the bread with butter. I’m not a nutritionist, I am a financial advisor, and financial coach. I just know that as a result of my personal experiences, and after 20+years working with my financial clients, many of those who have become more mindful of even just their eating out habits, have drastically improved their health and their financial lives.

The Difference Between Wanting and Needing: Redirecting and Prioritizing Spending

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Often when I am out shopping, I find myself picking up items that I think I really need. I justify it rather quickly and find myself with buyers’ regret shortly thereafter. The most irritating habit I have is not returning it to the store and getting my money back. Last week, I was cleaning out drawers and found a few bags of clothing that I had every intention of returning but it escaped my attention. I also found dresses, jeans, shoes, several coats, and a suit that had purchased but forgot about. Some of them for my granddaughter who now had long outgrown them and for me, well I thought I needed them.   

I’ve also gone through storage and closets and found household items that “I really, really needed” at the time, but there they were never opened or rarely used some with the sales tags still attached. I thought I should add up the costs of these items and see just how much money I had wasted. It had added up to over a thousand dollars. Yes, I will donate these things to a charity such as a homeless facility, and, it makes me realize it can be a blessing to others, but is there a better way to serve than by happenstance? Am I doing a disservice to myself by spending without being mindful of where my dollars are going? I would argue that both are true.   

I’m learning to be mindful of all of my spendings. It’s making me prioritize my needs and wants. This is especially important when you have ongoing medical bills and prescriptions to manage and pay for. They can seem to be overwhelming at times. Though, I don’t have high medical bills currently, I do recognize that may not always be the case. So, diverting some money into an HSA or a regular savings account for the sole purpose of this future need could help me in the future. You can look at it as investing in yourself or, ” paying yourself first.”  

We all have bills to pay but rarely do we see ourselves as important as one of those bills. Consider setting aside $15 to $25 every pay period for medical expenses. Or, if you have bills that are already outstanding, call the service provider and request to pay a little toward those bills every month. You may be surprised how little they may be willing to take. They are in the business of service and you are their customer. Trust me, they don’t want you to leave. By putting a little each month towards the bills can help you stay in good standing with the medical provider and can help keep the bill from going to a collector and from hitting your credit report.   

Also, do what I did. Look around your house for things you no longer need or don’t want. Consider selling them. Not only will you be freeing up space at home, but you can also make some cash. There are online selling apps like OfferUp, BookScouter, eBay, and more. Terminate subscriptions you no longer need. Pay especially close attention to online subscriptions you may have forgotten about.   

Another creative way of finding more cash is to always make change when buying something at the store. Everything in coin change put in a jar. Deliberately seek out change-making opportunities. You may be surprised at how much you save. I did and saved almost $800.00 in a year.   

Consider online banks that may offer more interest than perhaps your neighborhood bank. Buy only what you’re going to eat. A study published in the American Journal of Agriculture Economics found that the average household wasted 31.9% of its food. The US total annual cost of wasted food was estimated to be $240 billion or $1,866 per household.  In fact, wasted food is the largest component taking up space in US landfills. And the United States discards more food waste than any other country.  That adds up to 30-40% of the entire US food supply. So, don’t waste and keep that money in your pocket.   

Spending comes down to desiring to satisfy oneself, however temporarily, and often supersedes logic. It’s impulse buying. Even when we know we should be directing our money to important things such as; managing the costs of healthcare, utilities, etc., it’s often difficult to stop wasteful spending. And the temporary feelings of satisfaction quickly wear off when bills start coming in.   

Getting control of this habit is achievable and not really complicated. Create a reasonable budget. Start by keeping a record of EVERYTHING you spend for a month. This may take a bit of work but is well worth the effort. Make a list of all your bills, including anticipated medical bills. Are you spending more than you make? I’ve found that when putting this down in writing, when you see it, it becomes real and important.  Putting together a budget is actually very freeing. It will allow you to reduce impulsive discretionary spending and allow you to focus on getting a firm grasp on your financial life. And, the payday of reduced financial stress is like icing on the cake.  

Coming Into Your Own: Receiving Support as an AYA Cancer Patient

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When I was diagnosed with thyroid cancer in 2017 and again in 2021, I wasn’t told about the vast amount of online and in-person support groups or social media tools that were available, much less the Life with Cancer program at the hospital I was treated at. Instead, I found out about them when I decided to be brave and share my story on Instagram and Facebook and prayed for support and positive feedback. And once I did share my story, a whole new world opened up to me. I’m not talking about living as a survivor for the rest of my life, but rather the new family and community of shared experiences, extensive knowledge, and ultimately, the best support I could ask for. 

Adolescents and young adults (AYAs) are often placed into two buckets: they’re either young enough to be placed with pediatrics or old enough to be treated as a full-fledged adult. However, that’s not the reality. As AYAs, we face a lot more than one would think. Maybe we’re in high school or graduating and about to attend college. We’re developing and strengthening relationships with friends and family, and perhaps a significant other. We might be on our parent’s insurance and have no idea how to navigate the stack of medical bills that come with treatment. We have a lot of unmet needs that the healthcare industry is only starting to meet. That’s where social media comes in to help with cancer survivorship. After all, it’s not a “one and done” thing. 

Below are a few social media platforms and support groups/organizations I have found to be incredibly helpful, specifically for AYAs:

  • Facebook – support groups are available for every cancer, and even variants of cancer. I have found that they provide a safe space for asking questions about symptoms, medications, what to expect during and after treatment, etc. (And, of course, venting!) 
  • Instagram – As the saying goes, “A picture is worth a thousand words.” While this platform is usually a highlight reel, showing the rawness of what we’re going through can be very empowering 
  • Twitter – Here, you can find tweet chats, patient advocates, healthcare organizations, and healthcare professionals (doctors, nurses, etc.). Nothing is off-limits! 
  • Pinterest – find recipes for patients going through treatment 
  • Our Odyssey – support group for AYA patients with rare and chronic diseases, including cancer 
  • Stupid Cancer – provides AYA cancer support groups 
  • Elephants and Tea – AYA cancer support group 
  • Lacuna Loft – AYA cancer support group 
  • Cancer and Careers – helps with getting back into and/or leaving the workforce; discusses disability rights 

Guiding the Cancer Community: What It Means to be a Patient Leader

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We all have leaders we look up to, whether it be a friend, family member, mentor, or coach. In the patient community, we also have people we look up to who are making waves in the cancer advocacy world. But what does it mean to be a leader and/or an influencer? What qualities does this person have? How active are they in different communities and social media platforms? 

There’s power in sharing your story, and that’s one of the most crucial ways in becoming a patient leader. However, many of us are scared to share. I know I was when I got my first diagnosis, and then my second. Questions I asked myself were, “What will people think of me and/or what will they say,” and “Will I receive support?” When I gathered the courage, I posted my first picture on Instagram and then shared it on Facebook. The amount of support I received from family and friends, including friends I hadn’t heard from in years, was overwhelming. So, I opened up and began to share more. I knew my story was unique being a 27-year-old (adolescent and young adult [AYA]) thyroid cancer patient (a rare cancer) who was working full-time and putting myself through graduate school. So, I decided to share it in whatever way I could, and if I was told, “No, thank you,” I kept looking until I heard “Yes, we’d love to share your story!” again and again.  

As an active member of the cancer patient community, I have had numerous opportunities to identify myself as a patient leader and share my story, as well as my point of view on different assets of healthcare, in multiple formats. I measure my own success by the number of people I impact with my advocacy, whether it’s in a small or large way. While this is not always known and/or cannot always be seen, I know that I’m at least helping and/or impacting one person with whatever I tweet, blog, share a video, or speak on a podcast about, which can then be shared with others. 

So how can you get started in becoming a patient leader? Here are some suggestions: 

  • Share your story on social media platforms, including Instagram and Facebook 
  • This may include on your personal page as well as support groups 
  • Participate in tweet chats dedicated to specific topics you’re interested in, including #patientchat. Use the website, Symplur, to find relevant healthcare topics that are trending 
  • Look for cancer and healthcare-related podcasts. Email them to ask if they’re accepting guests 
  • Look for cancer and/or healthcare-related journals and blogs. Ask if they’re accepting guest submissions 
  • Network with other patient leaders and ask how they got started and what resources they used/are currently using 

Finally, remember there’s no “right” way to lead. We’re all patients with our own unique stories. Whichever way you decide to share it, know that you’re helping someone not feel so alone. That’s what a real leader is to me. 

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

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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. 

Survivor or Surviving? Deciphering the Words Used to Describe Cancer Patients

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National Cancer Survivors Day is a day to be celebrated by all cancer patients, whether you were just diagnosed or you’re well into remission. But what if you’ve faced cancer more than once and had to “keep surviving” because it either came back (termed recurrent) or it didn’t respond to treatment (termed refractory)? Does the connotation of the word “survivor” change? 

I had always considered myself a survivor. I always had a positive, but stable, tumor marker that “would never get to ‘0’ because some patients don’t,” or “it would take a few years to see a drop.” I continued to have clear scans for the next 3 years, but a month after my 4th “cancerversary,” it became clear why I still had a positive marker. Not all of my cancer had responded to radiation and was now making itself known by being a bright, solid lymph node on the screen of my annual scan. Ultimately, I was treated and my tumor marker went down. Having to face this twice, however, somewhat changes the script in my mind of being a “survivor,” to simply “surviving,” as I await the next time this happens. 

As a cancer patient, I have always told other patients that half the battle is your mental attitude. As survivors, we’re not always positive, though, and that may be seen as “not being thankful.” “Didn’t you survive cancer,” some will say, “aren’t you thankful for that?” To them I would yes, but surviving is so much more than being in remission no matter how many times you face it. 

As a 2-time cancer patient who is simply surviving and taking it day by day, it’s more than what the treatment has done in helping lower that marker. It’s the negative sides of treatment that aren’t displayed across social media, the sadness that I feel after having a chronic and rare disease more than once, a disease that said “not so fast” to radiation, and the grief of the burden I feel I have placed twice on my friends and family.  

As this special day is celebrated, know that some patients don’t feel like they’re “survivors;” they’re simply trying to make it through the day, fighting emotionally, physically, and mentally to keep going. 

Pain Management in Cancer: Avoiding Opioids

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Disclaimer: Sajjad Iqbal, MD is a retired physician and rare cancer survivor who routinely supports, mentors and guides other patients through their perilous cancer journeys. Any opinions, suggestions, or advice provided is solely from Dr. Iqbal’s perspective as a well-informed and knowledgeable cancer patient, not as a physician. The patients must discuss their health with their own doctors and follow their advice. 

During their long & tumultuous journey, cancer patients suffer from a multitude of very difficult and troublesome problems. Pain is perhaps the most common and debilitating one.  The pain can be caused by the cancer itself, as when it erodes the healthy tissues or when it attacks the nerves or nerve endings.  The pain of terminal cancer is regarded as one of the most severe pains known to mankind. Pain is also a very common side effect of virtually all of the cancer treatments, such as chemotherapy, radiation therapy, and the various surgical procedures, leading to devastating physical and emotional impact on the patient. 

Despite that, the medical community has historically done quite a poor job of managing the chronic pain and alleviating the suffering of the cancer patients. In the 1990s a renewed focus on pain management emerged and the pain assessment became one of the vital signs that the health professionals need to record for every patient. Unfortunately, while this did do some good to better manage the patients’ pain and suffering, it also led to the epidemic of opiate addiction. The emergence of the medical specialty of Pain Management (Algology) and overly aggressive and, at times, deceptive marketing by a greedy and unethical faction of the pharmaceutical industry led to an alarming increase in opioids prescriptions and thus the widespread addiction.  The opioids have an important role to play but were never meant to be used for chronic pain.  Opioids work best when given for a very short duration, such as after a tooth extraction or a surgery.  The patient is supposed to get off these medicines after a few short days. The risk of addiction that may be extremely low in the first few days of use, starts to increase exponentially beyond 2 weeks of regular usage. It stands to reason that, unless dealing with a short-term pain, the use of opioid painkillers for cancer patients makes very little sense.  

Some examples of such narcotic painkillers are Vicodin (hydrocodone), Percocet (oxycodone), Dilaudid (hydromorphone), Duragesic (fentanyl). All of these, and many other like these, are opium derivatives. Beyond the risk of addiction and tolerance, there are many other serious side effects, such as substantial physical and mental impairment, nausea, dizziness, and severe constipation that can lead to abdominal pain and rectal bleeding.  Opioids can also slow down breathing which can cause hypoxia (decreased oxygen supply to the brain).  An overdose of these drugs can lead to respiratory depression, coma and quite often, death.  In 2019, 50,000 people in the US died from Opioid overdose. Therefore, it is imperative that the doctors who treat cancer patients must find better pain management strategies with less side effects and without a risk of opioid addiction.   

There are a few strategies that patients can employ on their own to provide pain relief. Number one would be the better use of non-narcotic pain killers. Everyone is familiar with acetaminophen (Tylenol) and ibuprofen (Advil or Motrin). Neither one of those alone can provide adequate pain relief in severe pain associated with cancer, but the recent studies show that we can utilize these two simpler medicines much more effectively.  

These two medicines work very differently and are metabolized very differently in the body. They have very little in common with each other. Yes, eventually they both relieve the pain, but whereas acetaminophen works primarily on the pain receptors in the brain, Ibuprofen works primarily by reducing the inflammation at the site of the pain.  For years, the mothers of small children had been using a staggered schedule of both these medicines for the relief of their children’s pain or fever. There used to be a fear that you should not use both medicines together, however we now know that such fear is not rational.  The recent studies show that the two medicines, Ibuprofen & acetaminophen, are complimentary when used together because they have a different mechanism of action. The pain relief achieved by using Tylenol as well as Advil is greater than either of these medicines used singularly. In this case, 2+2 adds up to 5, rather than 4. You can find this date here.    

We also learned that for a severe & unrelenting pain, one can use a somewhat higher dose of either medicine.  In fact, one study showed that if you use the higher, but still less than the maximum allowed, doses of acetaminophen and Ibuprofen together you can achieve a pain relief that is equal to or better than the opioids. You can find that data here.

At the same time, the safety parameters were far better than the opioids. 

One must remember that this regimen of the higher doses used together is only recommended for the relief of a severe pain that fails to respond to the usual regimen.  Acetaminophen which is metabolized in the liver, should be used with a great degree of caution by any patient with a liver disorder.  An overdose of Acetaminophen (Tylenol) can cause liver failure and even death. 

 On the other hand, Ibuprofen is eliminated from the body by the kidneys and it tends to irritate the stomach.  Therefore, it should be used with caution by the patients with stomach ulcers or chronic kidney disorders. 

But for the average cancer patient suffering from severe & longstanding pain, both these medicines are very safe. The FDA allows 4000 mg as the highest daily dose for acetaminophen. However, some doctors prefer to cap it at 3250 mg in 24 hours.  This means 6-8 tablets of 500 mg extra strength Tylenol during a period of 24 hours. Acetaminophen is also available now in a 650 mg strength, which is marketed, as arthritis strength formula. There really is nothing extra in there for the arthritis relief. It’s just acetaminophen in a higher strength and cancer patients can certainly use that. So, two tablets of 650 milligram each of acetaminophen taken every eight hours will still keep you below the maximum allowed dose. It is worth emphasizing again that one should try the lower dosages first before reaching close to the maximum allowed dose. 

The maximum allowed dose of Ibuprofen is 3200 mg per day. Ibuprofen [Advil] comes in 200 mg tablets. There is also an 800mg prescription strength Motrin, which is the same medicine, Ibuprofen. Doctors often advise their patients with various degrees of pain to use three tablets of ibuprofen, 600mg total, at a time. Cancer patients can definitely use up to a maximum of 800 milligram of Ibuprofen every 8 hours, total 2400 mg in 24 hours, that will keep them well under the maximum allowed daily dose.  

So, if we use both these non-narcotic medicines properly and rationally, we can achieve a lot more effective pain relief without resorting to narcotics.  

In a nutshell, a cancer patient in severe pain who needs opioids can instead take up to a maximum of 2 tablets of 650 mg strength acetaminophen plus 600 to 800mg of Ibuprofen together and can repeat it every 8 hours. Then we’ll still have less than the maximum allowed dose of either one, and the studies show that the pain relief is equal or even better than with the opioids (Cochrane Reviews). I do not recommend that you should immediately go to that top dose as there are several options to try first. Start with lower doses and/or single drug and then go up in the doses if needed. You could take the higher dose of acetaminophen or you could take the higher dose of Ibuprofen, or you can combine them.  The pain may be bad enough at night that you need to take the maximum dosage of both medicines at night, but take the lower dose or just one medicine during the day time. The point is that you can manage your pain without resorting to opioids.  

The second strategy would be to use anti-depressants. The type of anti-depressants which are called SSRI, Selective Serotonin Reuptake Inhibitors, such as Escitalopram (Lexapro), Duloxetine (Cymbalta), and others have a beneficial effect on the chronic pains when used along with painkillers. These medicines work by increasing the level of the chemical serotonin in the brain. Serotonin is a neurotransmitter or hormone that is often referred to as a mood stabilizer or “the happiness hormone”. It protects the brain from harmful stimuli such as the pain signals.  When a patient in pain takes these medicines, the pain may still be there, but the misery factor goes down dramatically and they’re able to tolerate the pain far better than with the pain medicines alone. It is not uncommon for a patient with chronic pain to get off the opioids after the addition of SSRI antidepressants to the pain management regimen.  

 It’s important to remember that these medicines, Lexapro, Cymbalta, etcetera, require at least one week to start working. So, one cannot expect an immediate benefit. Lexapro (Escitalopram) is a simpler medicine and may be preferable for most patients, especially the elderly. The pain-relieving action of these drugs have not quite caught on yet. Generally, doctors treating cancer patients will reserve these medicines for the treatment of depression. I highly recommend that the cancer patients in severe and poorly controlled pain should seek their doctor’s opinion about the use of SSRI anti-depressants combined with the pain medicine. In fact, patients are strongly encouraged to discuss with their doctors all my recommendations prior to implementing them.   

Another useful strategy is to employ the alternative therapies such as meditation, prayers, yoga, other relaxation techniques, acupuncture, therapeutic massage.  

The last option is to ask for a referral to pain medicine specialist. A good and accomplished pain medicine specialist can do many things to assess the origin of pain and then determine how best to block it. There are procedures such as epidural injections, nerve blocks, nerve stimulations and many others. These modalities are especially useful for pain that may be coming from metastasis in the spine.  

 Ultimately, the important takeaway for cancer patients is that there are ways to improve pain outside of narcotics.  Talk to your doctor about some of these ideas and find what works best for your individual scenario as there is no “one size fits all” approach.  It may take a few different combinations of these treatments to find what works best for you, but hopefully these tips help improve your pain.

Embracing Telehealth: Protecting Our Data in a Medical Revolution

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The world changed when the pandemic came upon us, and so did healthcare. Telehealth visits with our care teams were available, but not as prevalent as they are now. We could message our doctors via secure patient portals or call a nurse and ask for advice. However, with the introduction of video, as well as new devices and apps, how is our privacy as patients affected? 

Telehealth can be defined as “the use of electronic information and telecommunications technologies to support long-distance clinical health care, patient and professional health-related education, public health and health administration.” The majority of us have now had a telehealth visit with one of our doctors via video or phone. They have seen into our lives at home, and we may have seen into theirs. While this can make for a personal, more intimate encounter, we also have to think of privacy. According to the Department of Health and Human Services, the Office of Civil Rights (OCR), which is responsible for enforcing Health Insurance Portability and Accountability Act (HIPAA) regulations, “will not impose penalties for noncompliance with the regulatory requirements …against covered health care providers in connection with the good faith provision of telehealth during the COVID-19 nationwide public health emergency.” What this means is that providers may use video-conferencing services, including Zoom, Apple Facetime, Skype, etc., without risking noncompliance under HIPAA. Therefore, it is up to the patient to review the privacy policy(ies) of the software being used. 

Additionally, recording these visits for our own personal use to listen to later and/or share with family members and caregivers may come into play just as if it were a regular in-person visit. But is this legal? Each state has its own statute that varies on whether one or two parties must consent (single-party vs. all-party jurisdictions). As of 2020, 39 out of 50 states as well as the District of Columbia are single-party jurisdictions where only one party has to consent. The remaining 11 states (California, California, Florida, Illinois, Maryland, Massachusetts, Michigan, Montana, New Hampshire, Oregon, Pennsylvania, and Washington) require both the patient and the healthcare provider to consent, and failing to ask for permission is considered a felony. Additionally, HIPAA does not extend to any recordings made by the patient. 

What about the use of apps? There are more than 300,000 health-related apps on the market today, with a 37% increase in usage since the pandemic began, especially in the area of mental health. With apps for everything from tracking our weight and heartbeat to counting the number of steps we take and the hours of sleep we get, it’s hard not to interact with one of these apps to streamline our lives and make them a little simpler. When it comes to the collection of data, however, how do we know what’s protected under HIPAA? Covered entities under HIPAA include healthcare clearinghouses, most healthcare providers, and health plans. However, if an organization is creating an app on behalf of a covered entity (or one of the covered entity’s contractors), they are considered a business associate, meaning they must comply with HIPAA rules and regulations. This helpful website provides different scenarios on whether or not an organization would be covered. This means that we, as patients, must be cautious in what types of data are being collected and how it might be used, which can usually be found in an app’s privacy agreement or policy. 

This also extends to use of wearable devices, including FitBits, Apple Watches, glucose monitors, and biosensors that collect patient-generated health data. According to a Gallup poll conducted at the end of 2019, 19% of U.S. adults wore a wearable fitness tracker, and a 2019 Washington Post article reported more than 3 million consumers wore a medical alert device. But how is this data regulated? When we collect data for our own purposes, the data does not fall under HIPAA regulations. However, should a healthcare provider ask a patient to submit data from that device and integrate it into their organization’s EHR system, a covered entity, it becomes protected by HIPAA. 

In conclusion, is telemedicine safe? The quick answer is yes and no. In an article released by the Patient Safety Network of the Agency for Healthcare Research and Quality, two physicians noted that “Studies have shown that telemedicine promotes continuity of care, decreases the cost of care, and improves patient self-management and overall clinical outcomes.” However, new technologies present new challenges that have to be worked through. This means that more research needs to be conducted and improvement processes be put in place to ensure protection of patient data. In the meantime, here are some safeguards healthcare organizations may put into place to establish peace of mind for patients: 

  • Be aware of updates from the OCR related to HIPAA 
  • Train providers and staff on policies, practices, and protocols for using telehealth services 
  • Make sure that your telemedicine portal confirms the security of patient data through the use of incident reporting, monitoring of security events, and strong levels of encryptions 
  • Have a strong authentication method, preferably two-factor 
  • Create a detailed audit log of user logins and meeting connections 

Claiming the Number One Spot

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Assimilation can sometimes take years to complete. Or, it can be a slow imperceptible change. It can happen and you may not be aware until after some time has passed. For others, assimilation can be a brutal quick mind-numbing takeover. What am I speaking of? It’s the mental and emotional takeover of being seen as a person with a name to a patient with a date of birth, social security number, and insurance card.

From the initial time you get your cancer diagnosis, you’re thrust into a complex healthcare system and suddenly you find yourself trying to maintain and keep your identity as a mother, father, sister, brother, son, or daughter, husband or wife. Soon, you’re running from doctor appointment to doctor appointment. Your sense of choice and control over your time and understanding your body is now unrecognizable to yourself. Eventually, you’re a patient. It’s scary how quickly your mindset changes and you find yourself feeling more like a victim. Understandable when you’re over your head all consumed in perhaps the battle for your life. Instead of assimilating, perhaps transitioning is a better term. It is difficult, but necessary, however, not to the degree you may think. Just because you are now ill, it doesn’t mean you have to just sit back and let the doctor make all the decisions and you just follow. You have to be an active participant in your care, every day, all the time! Traditionally we have always felt that doctors know everything and they will always do what’s in our best interest, all of the time. Not so! I had to remember when my husband was in treatment for myeloma, no two patients are the same, and no one doctor knows everything. There’s a reason it’s called “the practice of medicine.” It’s time to look at yourself not as a patient but as a person with a disease. You can still have control over your life and steer the ship.

This is a short fact sheet on self-empowerment. Refer to it over and over to remind yourself how to manage your treatment plan with your healthcare team. And, use it to expand your treatment team.

First:

Anytime you are in your doctor’s office, you are the most important person in the room. It’s all about you. Make sure the focus is on you and that you are giving your treatment team everything about your health, even minor changes as they may be important. Ask about the treatment, how it has affected other people and how it can affect you. What are all of your options? And, also equally important, what is this going to cost?

Second:

Ask over and over until you understand. Whether it’s about your health or the cost of your treatment plan, you need to be in the driver’s seat. You need to be able to plan not just for next week but for the rest of your life. Don’t be afraid to ask and get answers. Be respectful of your doctor’s time. Perhaps call in and make your doctor aware of your need for a few extra minutes to go over your questions or concerns or ask if you can send these questions ahead of your appointment so they can be prepared. Be aware that the financial questions may be sent to a social worker or someone else. On your request ask that they identify that person. That way you know who to go to for that information in the future. Or, request a few  additional minutes to your appointment to have your concerns addressed. The point is, make sure you ask about all the concerns you may have regarding your treatment and its costs.

If you have problems asking questions there are people who can help you who can advocate on your behalf when you can’t. In addition to discovering or acquiring the skills you need to become an effective self-advocate, you need to be empowered to believe that your voice can and should be heard. Unfortunately, many older people, my mother was one of those, who are less educated or come from lower socioeconomic groups—those who are timid or shy by nature—may find it difficult to question someone they perceive as authority figures who control their destiny. They may fear asking “dumb” questions, or may not even know the questions to ask, or alienating their doctors by questioning them. And, trust is critical to any good doctor-patient relationship. Patients want to believe in their doctors. If you find yourself not getting the attention you need or answers to your questions, or you’re getting push back from the doctor, it may be time to look for another doctor. It won’t be easy, but not doing so can have a huge negative impact on the quality of your care. This is advocating for yourself and it’s so empowering!

Third:

The more you know about your cancer, the more you can participate in your treatment. There are many ways to research your illness. There are cancer-specific non-profits that offer a wealth of information and cancer-specific support programs.  You may have access to a medical library or don’t forget the wealth of information you can get from creditable websites online.

One of the most difficult areas of advocating for yourself may be regarding understanding the cost of your care and sharing with the doctor before it’s too late how you don’t know how or if you can afford the care that is necessary. Financial toxicity adds so much stress which interferes with your health outcomes. And, unfortunately, the COVID-19 pandemic has only made things worse. The sooner you bring this subject up with your healthcare team the better off you are going to be. Our society, unfortunately, judges people on how big their house is, what kind of car they drive, and whose name is on clothing labels. Look around, you can have all the money in the world, but cancer/illness is one of the great equalizers. Your goal is to get the best care you can. There are many resources available to help you do that. From healthcare to financial assistance to empowerment guidance. Just ask!