How a Cancer Planner Helps Patient & Caregivers Keep Track of Progress

I know, it’s so scary. Making a plan to cure yourself and save your life. Literally, you have the weight of your world in your hands. But not to fear. Even though there is still no “cure” for cancer, many have successfully healed themselves from the deadly disease. Be assured there have been many countless cancer survivors before you who have paved the road to recovery with hope and encouragement. We’re just here to guide you on your way.

Being diagnosed with cancer is terrifying. So finding assistance and helpful information should be easy. In this blog entry, I will be guiding you through how to create the best appropriate cancer plan for your body and your condition. Within a cancer plan are three distinct segments – a treatment plan, a payment plan and a recovery plan. A treatment plan considers all of the patient’s therapy options, including conventional care and alternative methods, to make the best informed decision per condition. A payment plan accounts for the finances and how to outsource funds to pay the inevitably heft medical bills. And lastly, a recovery plan includes the supplementary actions that need to be taken, such as changing your diet and lifestyle goals. When all three parts function together, it is intrinsic to improving the chances of survival. Effectively enforcing and efficiently keeping track of a cancer plan will help a patient progress through healing swiftly and with a greater peace of mind.

To begin, you should assume it’s your responsibility to know everything about your body and your condition. But isn’t this my doctor’s job? You may askWell, sadly, most doctors won’t be able to provide personal quality care because of the largely disproportionate ratio of registered oncologist to new patients. With approximately 1.6 new cancer cases each year and only 21,200 registered oncologists, there’s a dire shortage of cancer specialists in our country (American Cancer Society, 2014). It’s best if you don’t become solely reliant on your doctor. He/She should really only be there to clarify esoteric information for you. Bring out the doctor in yourself by having a cancer planner to keep all of the information pertaining to your cancer organized & easily accessible. Be prepared for every appointment by doing your own research and coming up with questions beforehand. Make the most out of the time you have with your oncologist because it may be hard to get in touch with them during off hours. Take notes of every appointment so you can keep track of how you’re progressing after each. Accumulating all the data you can possibly find will only benefit you as a patient and caregiver. All you have to do is seek and you will find the answers. And the more you know, the more you have to fight with.

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The first thing to consider after your initial diagnosis is – What are the treatment options for my type of cancer? If your cancer is invasive, your doctor will strongly urge you to perform a very aggressive form of orthodox treatment as soon as possible. Be ready to be convinced to do surgery, radiation or chemotherapy. But just know that there are many alternatives on the spectrum of treatments. From surgery, chemotherapy, immunotherapy, gene targeted therapies and clinical trials, to some of the more obscure treatments such as plant extract therapies, there are just so many options available. It’s also common to integrate therapies of the conventional norm and of the alternative. For example, a patient with stage 2 lung cancer may opt to have surgery and also adopt Gerson Therapy as a supplemental treatment where they heavily regulate their diet. So how do you choose the best route? This is where the beauty of having a cancer plan comes in. Start by weighing out your different options in terms of cost, duration, side effects, convenience and the general pros and cons for each. This will help you to filter out the options that aren’t plausible for you and your family. Trust your gut feeling and narrow your list down to the top three options. Create a visual roadmap for each treatment option listing the action steps you’ll need to take in order to see this through and picture yourself after each milestone. How are you mentally, physically, emotionally and financially? Trust me when I say that you’ll have a greater peace of mind knowing that you’ve weighed out all of your options and have narrowed your focus down to the treatment plans you believe will work best for you. Trusting your treatment plan is absolutely vital to fighting your disease. Believe you can and you’re half way there.

Now how do you pay for all of this? There are ways to pay for all of your expenses when you get creative with it. Since crowdfunding has taken off in the last couple years, you’ll be surprised at how many people, whether it’s your friends or those who’ve just heard your story but have never met you, are more than willing to help your cause. You can check out platforms like GiveForwardGoFundMe or Indiegogo. For further financial assistance and direction, you can evaluate these helpful organizations from our resources list (www.familyreach.org, cancercarecopay.org, cancerfac.org, thechainfund.org). Having a cancer planner will help you to keep track of all your medical expenses in one place and stay on top of your payments. The last thing you want to worry about is all your expenses adding up and getting out of hand.

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Finally as part of your recovery plan, it’s important to ask yourself what vital changes to your lifestyle choices are necessary to help you heal and strength your immune system. A breakdown of the immune system is the primary reason humans develop cancer; we must work towards recovery by building back up the immune system with nourishing therapies. There’s a bunch of research you can do on cancer fighting foods you should incorporate into your diet. There is a cancer fighting food pyramid inside of CanPlan to help you get started. What you put into your body is one of the only elements you can control in your fight against cancer, so don’t ignore the importance of it. Now to create the best plan of action to guide you towards recovery, start by keeping track of your daily diet, exercise and medications. Then at the end of the day, rate how you feel overall on a scale of one to ten and what your general mood was for that day. Do this everyday as you start to make your lifestyle changes and notice what elements are and aren’t working for you. Perhaps you noticed that running for 30 mins greatly improved how you felt for that day. Take note of this and be consistent with it in your treatment plan. The more aware you become of your body and how it reacts to certain elements, the better you’ll be able to detect any new symptoms and find ways to combat against it. Keeping track of your progress will help put you in the driver’s seat with your fight against cancer. Don’t wait around for your doctor to tell you how you’re doing. This is your fight. You control how you want it to go.

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Remember, you know your body best so always honor your body and how it reacts to certain treatments. A one-size-fits-all approach, much like the plan your doctor will prescribe you, won’t work in this situation. Since there is no “cure” to cancer as of right now, you’ll have to discover the best recovery plan through experimental trial and error. We encourage you to ask for help and seek guidance as much as you can. We’re lucky enough to live in an era, and country, with unlimited access to infinite knowledge where we can freely acquire information to make a well-informed decision (just be sure to double check your sources). It’s as if we’re given all the tools we’d need to be our own doctor. Now isn’t that a progressive thought.


Meet the Author : Sharon Kim

Why Health Systems and Hospitals Should be Transparent to Earn Trust

Editor’s Note: This post was written by Craig Mullen for HealthSparq and originally published on February 6, 2018


Would you buy a new car and drive it off the lot without knowing the cost? Or purchase a house without comparing prices of other properties in the neighborhood? Silly questions, right?

So, why do we as consumers/patients continue to buy treatments and services from health care providers without knowing the estimated costs and if we’ve selected the best venue of care?

When it comes to health care, I think a lot of the issue is related to our conditioning – we think to ourselves, ‘I’ve never known the cost of my treatments and visits, so it must just be how it is.’

However, in the past couple of years, consumers have become vastly more engaged in all aspects of their health care and expectations are increasing related to accessing cost estimates and quality scores. According to Accenture, 91 percent of health care consumers are looking to price information, but many providers don’t offer it—or it isn’t easily found.

RELATED: READ WHAT HEALTH SYSTEM LEADERS SHARE ABOUT CONSUMERISM IN NEW WHITE PAPER

Health systems have been hesitant to share pricing information with consumers, but are starting to become more strategic by empowering people with cost information and personalized recommendations of care. Many realize that being transparent is a critical component of building trust within their communities. With this trust, consumers are more likely to look to their health care provider for recommendations for the right venue of care (physician, telehealth, urgent care facility, etc.) and other decisions.

Recently, we commissioned research, asking health system leaders to define an optimal solution to address consumer demands and expectations. Most agreed the solution would need to be web-based and incorporate some type of mobile app capability. Various features and benefits were on their wish lists, including:

Robust, Interactive Tools

These include doctor and hospital ratings, price comparison calculators, assistance in understanding insurance benefits, online scheduling and translation/multi-language capabilities.

Bi-directional communication

According to one participant, “We need patients to feel like this is not the health system bothering them, sending unwanted texts or spam. We need this to become a way that they engage with us so that they can’t be passive recipients,” he said.

Seamless integration

Another executive summarized this aspect best, detailing, “We can order an Uber through an app. It should be as seamless as we’ve seen with everything else in our lives.”

Comprehensive platforms

In general, all participants worry that current digital solutions to patient engagement and cost transparency are too fragmented and not collaborative enough.

HealthSparq is focused on understanding and addressing consumers evolving health care needs and what’s important to them, such as – cost, convenience, provider and/or services. This insight can help them get the care they need by booking an appointment with the right provider or guiding the consumer to a location for immediate service (telehealth, urgent care, etc.).

Driving behavior change that delivers business outcomes for providers requires trust from patients. Sharing cost information is a win-win. If you’re giving patients guidance on care options and cost information in the process, they can make smarter choices – for their health and finances – and you gain their trust, loyalty and an educated patient who is engaged in their own health care.

To learn more, download “Defining Success in the Era of Health Care Consumerism: How Health Systems Can Build Loyalty, Preference and Trust Through Transparency and Guidance.”

The 7 Habits of Highly Effective Patient Advocates

“Without doubt, you have to leave the comfort zone of base camp and confront an entirely new and unknown wilderness.” -Stephen Covey

Stephen Covey’s best-selling book, The 7 Habits of Highly Effective People was first published in 1989 as a business and self-help book. Covey presents an approach to being effective in attaining goals by aligning ourselves to what he calls “true north” principles. I was inspired reading this article by Melissa McAllister, to go back and read the principles behind the book to see how we might apply them to our advocacy work.

HABIT 1: Be Proactive

The first habit that Covey discusses is being proactive. I cannot think of a more apt description of patient advocacy – in order to be effective, we must be relentlessly proactive. Carolyn Thomas, a heart attack survivor, and author of A Woman’s Guide To Living With Heart Disease, tells the story of how her cardiac symptoms were dismissed when she was first admitted to the ER. She wonders had it been her daughter or sister experiencing the same symptoms, what would she have done? The answer: “screaming blue murder to get the help this other person deserved, with no thought whatsoever of being labelled as “difficult”. We need to be as strong and as diligent about getting help for our own medical needs as we’d be if we were trying to get help for our loved ones.”

HABIT 2: Begin with the End in Mind

Habit 2 suggests that, in everything we do, we should begin with the end in mind. We should envision the end result clearly and work with purpose toward achieving our vision of optimum care for ourselves and others.  One of the best ways to incorporate Habit 2 into your life, according to Covey, is to develop a Personal Mission Statement. Consider creating a Mission Statement to put your advocacy goals in focus and make your vision a reality.

HABIT 3: Put First Things First

In order to be effective, we must learn to prioritize our day-to-day actions based on what is most important, not what is most urgent. This means learning how to say no in order to focus on our priorities. As Covey puts it, “The key is not to prioritize what’s on your schedule, but to schedule your priorities.”  Dee Sparacio, author, blogger and ovarian cancer advocate, recently wrote on her blog about taking a step back from her heavy work-load of advocacy activities to focus on her priorities. She outlined a list of questions to help her decide which activities to prioritize:

  • How effective am I at doing that work?
  • Am I the only one doing that work?
  • If I am the only one can another advocate/person do it?
  • How much does the work benefit other survivors/patients?
  • How many people are effected by the work I do?
  • Do I ever regret having agreed to do the work and feel that way when I am doing it?
  • Does the work ever prevent me from doing other things – like hang out with my husband, grand-kids or dog?
  • Does that work bring me joy?

These questions can be helpful for us to look at our own activities and decide which advocacy roles we want to put on the top of our priority list.

HABIT 4: Think Win-Win

In our advocacy work, we will inevitably find ourselves in a situation where our wants and needs conflict with another’s. In order to practice this habit, we must commit to creating Win-Win situations that are mutually beneficial to each party. While recognizing this might not always be possible, this habit reminds us that we must at least try to understand the other person’s point of view and work if possible towards a mutually satisfying outcome.

HABIT 5: Seek First to Understand, Then to Be Understood

Communication is one of the most important skills we can develop. While many advocates can speak well, how many of us are good listeners? Listening and hearing are not the same things. Most people listen with the intent to reply, not to understand. Poor listeners are unable to separate their own needs and interests from those of others. They are more likely to interrupt and to jump to conclusions about what the other person is saying. Active listening requires critical thinking skills and emotional intelligence.  Developing the ability to listen deeply allows us to respond with an open minded empathy to another’s situation. We are less inclined then to interpret the other person’s words solely from our own perspective and frame of reference.

HABIT 6: Synergize

Synergize is the habit of creative cooperation. Covey describes this habit as one in which the whole is great than the sum of its parts: “It’s a process, and through that process, people bring all their personal experience and expertise to the table. Together, they can produce far better results that they could individually.”  From our own advocacy work, we know this to be true. We are stronger together. When we bring our collective voices, skills, and experience together, we achieve more. Covey points out that valuing differences is what really drives synergy: “When people begin to interact together genuinely, and they’re open to each other’s influence, they begin to gain new insight. The capability of inventing new approaches is increased exponentially because of differences.”

HABIT 7: Sharpen the Saw

Habit 7 is focused around taking time to renew our resources and health to create a sustainable long-term environment for our advocacy work. “Sharpen the Saw”, writes Covey, “means preserving and enhancing the greatest asset you have—you.”  In our desire to effect change quickly we can easily burn-out. Renewing ourselves physically, spiritually, emotionally and mentally will help us practice each of these seven habits more effectively. 

Some Final Thoughts on Being an Effective Patient Advocate

 I asked some of my favorite patient advocates to share their thoughts on what makes an effective advocate. Here’s what they told me.

“Passion, persistence, patience. Self-leadership, clear vision, courage (at least sometimes!) ‘We’ attitude, optimism, hope, trust, belief in basic goodness. Ability to listen, collaborate, cajole, criticise (constructively), take criticism.” – Anne Lawlor, Founder, 22Q11 Ireland

“Knowing when you need to talk about your personal view or experience and when you need to garner input from other patients. Nobody’s voice speaks for everyone.” – Alison Fielding, Chair Cardiomyopathy UK

“Passion, tenacity and balance. If you don’t have a passion for what you do, you tend not to give your all. Tenacity for it is inevitable that someone will tell you no or close the door in your face. When that happens you must remember your passion. Balance because you need a life.” – Anne Marie, lung cancer patient and blogger at These Are My Scars

“Perseverance, stand your ground, listen, don’t be afraid (to ask questions or admit you don’t know something) – remind others you want the same.  Understand your goals, what are you trying to achieve and why.” – Julia, co-founder #BCCWW

“Passion, commitment, belief in what you are doing, being a voice for not just you but many, speaking out, assertive, having your opinion doesn’t matter if it’s unique, a great communicator and networker, good listener, resilience and determination.”  – Jo Taylor, Founder, After Breast Cancer Diagnosis

As you can see so many of these responses echo the 7 habits above.  Patient advocacy requires self-belief and a clear vision for what you want to achieve. Above all, it requires dedication, persistence and commitment. I am so proud to be able to work among such passionate patient advocates. The work is hard and often goes unnoticed, but your reach and impact is immeasurable.

Clinical Trial Helps Lung Cancer Patient Live Active Life

Editor’s Note: This blog originally appeared on the American Lung Association’s Blog. You can view it here.


Donna Fernandez’s father died of adenocarcinoma at the age of 49, just six months after he was diagnosed, so when she learned she had the same disease, she knew exactly what it meant.

“They told my husband that I would live for four months,” she recalled.

Adenocarcinoma is a form of non-small cell lung cancer often found in the outer area of the lungs and makes up about 47% of lung cancer cases, and usually grows and spreads to other parts of the body more slowly than small cell lung cancer does. It develops in the cells of the outer layers of lung tissue, which line the cavities and surfaces of the body and form glands.

Donna was put on traditional chemotherapy and the cancer tumors did shrink, but the moment she stopped chemotherapy, they came back. “I was most worried about my dogs,” Donna said. “They can be pretty evil, and no one is going to love these little devils the way that I do.”

Like many patients, Donna, who worked through her treatment, had a tough time with chemotherapy. If she had treatment on Thursday, she would feel fine until the steroids from the treatment wore off by the weekend.

“I’d be so nauseated that I could not bring myself to drink anything,” she remembered, “I wouldn’t be able to walk from the couch to the refrigerator.”

During chemotherapy in 2013, Donna was approached with the opportunity to join a clinical trial, and it changed her life.

“I had no idea that it would help me,” she said. “I thought that I was helping future generations.”

Still an active participant in her clinical trial for treatments, Donna checks in every two weeks for an infusion and extensive blood tests. With the personal care administered from her healthcare team, to the tailored medical regimen, down to the feeling of being among family when she visits the Cancer Center at University of Texas Southwestern, Donna admits that she went from surviving to thriving.

“I can’t say enough about the ramifications [of the clinical trial],” she said. “I’m living proof. I’m not just alive, I’m living.”

Donna and her dogs travel often as they participate in dog agility competitions throughout the country. They went to Tennessee last year, and Donna is now preparing for a trip to Missouri, all thanks to the tremendous treatment received as a result of a clinical trial.

“I’m living my life and that’s so significant,” she said. “Just a few year back, I probably would not have made it.”

Donna’s story is proof that clinical trials are a valid treatment option and should be considered as an option throughout treatment.

Notable News: February 2018

Sometimes, even the most seemingly unrelated of symptoms can be a warning sign of cancer, says nytimes.com. While some might associate depression as a side effect of cancer, it can actually be a sign of cancer growth in the body. Some cancers actually trigger depressive symptoms. The phenomenon was first noted in 1931 with pancreatic cancer patients and more recent research supports the findings. The invasion of the cancer cells causes the body to release cytokines which are messenger chemicals that when released by certain cancers create an inflammatory immune response in the body along with the neurological response that causes depression. The theory is that when the cancer is removed from the body, the depression will gradually be reversed. This story emphasizes the importance of listening to your body and not ignoring symptoms that something more serious might be going on. Learn more here.

A new treatment for a common, but often not discussed side effect of breast cancer is showing positive results, says npr.org. Lymphedema, a condition that is common after cancer treatment, can cause painful swelling of the soft tissue of the arms and legs and can increase the risk of infection and can be life threatening. It is often the result of the removal of lymph nodes and radiation used to treat cancer. Some surgeons are experimenting with repairing or recreating a healthy lymph system for patients who develop lymphedema. The surgery, which has been around for about ten years, but has recently been perfected due to advances in body imaging, involves transferring lymph nodes from parts of the body that weren’t affected by the cancer treatment. Another type of surgery is designed to prevent lymphedema altogether. When the lymph nodes are removed, instead of cutting off the vessels they are reattached to a vein so that the drainage system has as little interruption as possible and the risk of lymphedema is reduced. You’ll find more about lymphedema, the surgeries to prevent it, and some patient stories here.

There’s new research from the National Cancer Institute, says dailymail.co.uk, that might make you stand up and take notice. It turns out that even just one hour of sitting increases your risk of getting nine types of cancer, including lung, and head or neck, in addition to breast and colon cancers. The information was reported at the American Association for the Advancement of Science conference in Austin, Texas earlier this month by Charles E. Matthews, an epidemiologist at the National Cancer Institute. Matthews says that eliminating health risks requires four to five times more exercise than previously thought. While exercising more is important, says Matthews, even more important is less sitting. Matthews recommends adding in light household chores or taking a walk instead of watching television. Get more information here and you can also watch a short video reporting the findings here.

Finally, February is Cancer Prevention Month. According to moffitt.org, research and studies continue to show that the majority of cancers are the result of lifestyle choices and environmental factors that could be changed or avoided to prevent between 70 to 90 percent of the gene mutations that cause cancer. Fortunately, some of the ways to prevent cancer are pretty easy and painless. You can find eight strategies from Moffitt Cancer Centers here and seven tips from mayoclinic.org here. Of course, whether it comes to prevention, treatment, or support, you will find some of the best resources available right here with Patient Empowerment Network. Check out our programs here.

Flu Epidemic Highlights the Need to Take Precautions

If you’re the type of person who doesn’t believe in getting flu shots or who doesn’t take precautions, the 2017-18 flu season surely should convince you of the seriousness of the threat. According to the Centers for Disease Control, the infection rate has reached 7.7 percent, which makes it the equal of the deadly swine flu outbreak of 2009. Hundreds of thousands nationwide have been hospitalized with the flu, and more than 40,000 have died, some of them even children, which means the 2017-18 flu virus has reached epidemic levels. There are many ways to prevent the flu, including well-known steps such as frequent hand washing, disinfecting, and getting the flu shot, to smart lifestyle choices that bolster your system against infectious illness.

Remember, when it comes to avoiding the flu, your dog isn’t necessarily your best friend. You can contract the flu in nontraditional ways, such as the interspecies transmission of a virus, which sometimes creates a more harmful or easily transmissible mutation to occur. This can be especially dangerous with the influenza virus, which is able to evolve pretty easily.

Smart choices

Few things protect you as well as good, restful sleep each night. It restores your body and strengthens the immune system, so it’s advisable to avoid alcohol consumption, which disrupts your REM sleep. Feeling tired and worn down makes you much more vulnerable to the flu. Same goes for caffeine, so cut back on all that coffee, especially in the evening. Consider switching to decaf. And don’t be worried about taste, many brands are just as tasty as the real thing, even if they don’t supply that jolt. Even better, substitute green or black tea for coffee, and don’t stint on the lemon and honey, which offer their own health benefits (honey has antibacterial qualities).

Protein is another ally in your battle against the flu. Eat fish and eggs as much as possible, because of their ability to strengthen the immune system. If you need something a bit more than plain old scrambled or fried eggs to start your day, a soufflé or frittata will get the job done just as well, plus you can mix in all kinds of tasty things, like onion, cheese, and any greens you please.

Account for high-traffic areas

Most people pick up a virus at work. Things can get pretty hectic at the office, and it can be easy to forget to disinfect your surroundings or yourself. Plus, you’re also forced into close quarters with people who may be chock full of germs and should probably be at home convalescing. That makes work a “perfect storm” for the transmission of a highly infectious illness like the flu. Make liberal use of disinfectant wipes around your work station and anywhere else you might come into contact with germs others have left behind (such as the coffee pot, door handles, etc.). Remember that viruses can survive on surfaces for days.

Use your own pen

Considering how easy it is to get sick just by touching seemingly innocuous objects, it’s a good idea to carry around your own pen so that you’ll have something germ-free to write and sign things with at the bank drive-through or the pharmacy. It’s a good way of controlling your environment, rather than using a pen that’s been passed from hand to hand.

Just juice it

Juice a cold, juice a fever. That’s been the advice of medical science for a long time. Having a juicer makes it easy to follow that advice, since you can juice just about any fruit or vegetable, which will help keep your immune system strong.

You don’t have to spend flu season in a plastic bubble, but you should try to control your own environment and reinforce your immune system. Try looking at every object as a potential carrier of germs. And be sure not to neglect your sleep or diet.


 

Courtesy of Pixabay

Negotiating Cancer: Tips From One Who’s Done It

Editor’s Note: This blog was written by Stefanie Joho, an advocate, speaker, and colon cancer survivor, for The Washington Post. You can see the original blog here.


At the age of 24, after two surgeries and two aggressive rounds of chemotherapy failed to cure me, my oncologist sent me home to die. When I was first diagnosed with colon cancer in 2013, I’d never even heard the word immunotherapy. I didn’t know that my doctors wouldn’t have all the answers. I thought clinical trials were last-ditch efforts rather than treatments that save countless lives. I didn’t know that a treatment geared to fighting my specific type of cancer and the genetic components of my tumor would go on to potentially offer tens of thousands of patients a revolutionary new path to surviving cancer in 2017.

Because I’m one of the very few lucky ones who looked into the abyss and made it out on the other side, I feel it is my duty to speak up and share some of the critical things that I have learned in what is now a new era in cancer care. Because a disease that should have killed me instead launched my career in patient advocacy.

[‘This is not the end’: Experimental therapy that targets genes gives cancer patients hope]

First and foremost, it is important to remember that every cancer is unique. Your journey will be different from mine. Your cancer is yours and yours alone. So think of the following points as “road signs.” They’re ones that I wish someone had shown me when I felt lost, with nowhere else to turn. The goal of this guide is to potentially help shape your thinking as you become an active participant in saving your life. More than anything, I hope it prompts you to question the presumption of cancer care for nearly a century.

1. The more we know, the more we can fight for our lives. 

We look to doctors in their white coats to be the experts — partly because, in a moment of such despair, we want to be able to look to someone to just give us the answers. But you should know that you will not find that person in anyone but yourself.

In the beginning of my cancer journey, I felt intimidated by my doctors and made several decisions that I now regret. I walked into appointments and agreed to everything instantaneously, without even considering a second opinion. As my cancer kept coming back and the treatments kept failing, I decided that the only chance I had to make it out alive would be to become an active participant on my journey. I would have to educate myself. I scoured the Internet. I became an “expert” not only in my specific disease, but also in the current cancer landscape.

I’m in no way encouraging you to become your own doctor and understand all the science. And I’m certainly not encouraging you to take everything you read on the Internet as fact. But in 2017, with the amount of accessibility to information, I’m encouraging you to seek it out. Never take anything at face value or trust blindly. Make informed decisions, not decisions based on fear. Walk into appointments with your doctors as an equal, not as a passive bystander. Being an informed cancer patient today is a full-time job. As with any job, that means learning new skill sets and finding the resources needed to succeed.

2. Asking questions is not making trouble. 

You will often be made to feel that being a “good patient” means not asking questions. But do not be afraid to speak up. Your life quite literally depends on it. Come into every appointment with a prepared list. If possible, bring someone with you who can take notes. If you are confused about something, ask. If you think of it later, write it down. Remember: You’re the one whose needs are paramount. You’re the one who is fighting for your life. Make every thought, concern and feeling heard. If it isn’t received the first time, say it as many times as necessary.

If you begin to develop a symptom from a treatment side effect or from the cancer itself, understand that it is the system’s job to help you get relief. If your doctors aren’t taking you seriously, do not believe their judgment over yours. And if you feel that your physician doesn’t understand or listen to you, then perhaps it’s time to seek one out who will. In my opinion, an individual who does not have empathy is not a physician.

3. No two cancers are the same. Become an expert in YOUR cancer. 

No two cancers are the same. Increasingly, knowledge of such individual variation is being shown to lead to more effective treatments. Ask your physicians and understand every type of genetic testing available to you. The more granular you can get about the specifics of your disease, the more you will maximize your chances of identifying the best possible treatment for your “personal” tumor. (Discovering the genetic biomarker of my cancer saved my life.) Continue to expand your resources so that you can be an expert in your own cancer.

4. Take note of EVERY potential side effect. Report everything. 

The incredible advances in cancer treatments have created a new set of challenges for clinicians, especially in how to identify the side effects. Given that these are new treatments, your doctors are not as practiced with them as they are with chemotherapy and radiation.

For example, immunotherapy is entirely different from traditional treatment. The former utilizes the patient’s own immune system, whereas the latter aims to attack only the cancer cells. Early recognition and proper management of side effects can make the difference between life and death.

Don’t hold back a single concern from your doctor and care team. Even if you think it sounds minuscule or irrelevant, your oncologist needs to know everything to best care for you. Listen to your body. Observe and report any changes.

5. Clinical trials are not a last-resort option.

The lines of treatment are rapidly changing, and, more often than not, getting access to cutting-edge treatments entails enrolling in a clinical trial. There’s an unfortunate misconception that clinical trials are reserved for those who have exhausted all other options. In reality, trials can actually offer access to the most individualized cancer treatment. And in fact, immunotherapy is more and more becoming the first line of treatment — and even being used before surgery to prevent relapses.

And just as individual patients can’t tackle their disease by themselves, we all ultimately must help one another by sharing and participating in clinical trials. Only 4 percent of cancer patients are currently enrolled in studies. Explore trials at cancer centers with a lot of experience in the type of therapy being tested. See if you have options outside of what has been standard of care for 70-plus years.

In the doctor-patient relationship, patients must understand that they are partners of science and as big a part of the cure as doctors. Without us, and our willingness to participate, medical advances would not exist. I will always feel a tremendous sense of pride for participating in a study that will save many thousands of people’s lives.

6. Cancer is not just a physical disease. 

It is critical throughout your journey to address the mental, emotional and spiritual aspects of this disease. Seek help, support and healing from other places, too. There are many schools of thought about why people become ill and what can be done to help them recover. It’s important to maintain your anchor in generally accepted medical principles, but don’t be afraid to look further up- and downstream to see if other currents of healing can add value for you and your care team.

As only one example among many, learning about nutrition made me feel as though I were actively fighting and doing something every single day to help my body heal.

7. Hope is a lifeline.

Don’t let anyone ever take that away from you. I believe in hope. Period. It saves lives. When your mind tells you that it’s over, the body has no reason to keep fighting. If you find yourself drifting in that direction, remember: “You haven’t failed the treatments; the treatments have failed you.”

Of course, doctors must tell their patients the difficult truth. But the specific words used to deliver such news matter. If your doctor is unable to provide you with hope or encouragement to keep fighting, find the hope and strength from within yourself and the loved ones around you.

8. None of this can be done alone. 

This might sound overwhelming. But with great power comes great responsibility. You are powerful, but you are not superhuman. Know your limits, and respect those limits.

Cancer is not a journey that you can navigate alone. The people and professionals with whom you surround yourself will alter the course of your journey. They will lend you strength when you feel you simply have nothing left to give.

If you physically or emotionally cannot actively advocate for yourself, then ask someone to be your advocate. When things were particularly bleak, my younger sister, Jess, often had to speak up for me. She knew what my doubts were, what my concerns were and what was important to me. She became my voice when I didn’t have one.

Create a health-care team that listens to you and cares about you and includes you in every aspect of your decision-making process.

Lastly, and so very importantly: Connect with others in the community. As much as your loved ones will do everything in their power to be there for you, they simply will not be able to understand the complexities of what you are grappling with on a daily basis. Making friends with other cancer patients (even through social media) enabled me to share the fears and anxieties that I was too ashamed or embarrassed to talk about with those who weren’t confronting their own mortality. I could speak openly about my side effects, the changes taking place in my body, my isolation. I could utter the words, “I’m ready to give up,” without the looming guilt associated with saying that to loved ones.

It certainly doesn’t have to be about only cancer, all of the time, but knowing that this kind of support exists is healing. It makes you feel understood.

Prescription Co-Pays: One Piece in a Very Complex Puzzle

This article is written during this time when patients and legislators are howling about drug prices and some journalists are piling on, unfortunately, without doing much research. Admittedly, drug prices especially hit home with people like me—cancer patients who take powerful oral medicines to live a longer, better life. As our pocketbook gets hit hard we wonder who we should be mad at? Read on because, like everything in healthcare, it’s more than a little complicated.

A recent television report out of Milwaukee quoted a cancer patient as saying that “she’s paying more than $19,000 out of pocket a year” for a cancer medication that’s keeping her alive.

I was having lunch with a medial journalist friend this week and I said, “This is why cancer patients complain about the cost of their prescriptions. When they go to the hospital, the costs are high, but they don’t have to pay up front. However, when they go the pharmacy or call the mail order pharmacy like I do, they have to pay for the meds right then and there. When it comes to cancer medicines, sometimes the prices are very high, and too often the patients can’t afford them.”

My friend had a quick and passionate response:

“The story is wrong, misleading, unbalanced, will do nothing to lower the price of our meds to us and misguided legislation could limit investment in new research and, as a result, access to life-changing prescriptions in the future!”

It’s the CO-PAYS…

My friend continued, “Let me remind you, what patients are paying is the co-pay, the out-of-pocket expense set by the insurance company and not by the pharmaceutical company.”

He’s right—co-pays are one significant piece in the natty drug cost problem.  As we wrote at the end of last October, “Insurance covers the costly, debilitating and potentially risky (bone marrow) transplants, but puts up barriers when it comes to prescription medication: high co-pays, high tiers requiring the largest out-of-pocket payments …Are the drugs expensive? By most standards, yes, and this is not to support drug pricing. But think about it … If insurance will pay that mortgage-sized bill for a transplant, why stop when it comes to the prescriptions?”

When insurance does cover our meds it makes a huge difference to our health and our wallets. Greg Simon, Executive Director of the Cancer Initiative for the Biden Foundation and a CLL (chronic lymphocytic leukemia) survivor, told us in an interview: “Some people like me have good insurance. Even though the cost of my drugs per monthly treatment was 30 to 40 thousand dollars, my co-pay was very affordable.”

That’s true for me right now. I have completed six months of infused CLL treatment. The retail cost of those drugs was over $40,000 each time. First of all, Medicare had a negotiated price and paid substantially less. Secondly, I have a low-cost Medicare supplement plan through AARP which picked up the cost of what Medicare didn’t cover. So I paid $0 for that course of infused treatment. HOWEVER, I have a second cancer, myelofibrosis, where I take an oral cancer medicine (there is not really an infused one at the hospital). I have to pay $3,000 out-of-pocket at the beginning of each year on Medicare, and an additional 5 percent co-pay each month after that.  The monthly co-pay is based on the RETAIL cost of the medicine—not the negotiated discounted price the drug company gave to the insurance company. As my 20-year old would say, “That’s kinda screwed up!”

So the complaint about the $19,000/year co-pay (if it’s even accurate) is aimed too narrowly—there are more pieces in this pricing puzzle than just the drug makers.

And it’s not the first time. This is a well-organized, well-funded misdirection.

Another series of media reports, one of them a trade publication called Fierce Pharma, concern another cancer patient who has been complaining that over six years or so, his copay rose from $42 for a four-week supply of his cancer medication, to $250 for a four-week supply. That’s a 500 percent increase in his copay, truly outrageous. However, a review of the list price of the medication indicates a 33 percent increase during that period. The rest of the copay was imposed by his insurance company.

WHERE DO CO-PAYS COME FROM?

Generally speaking, insurance companies negotiate the final price they pay for a medicine, often with the aid of a middleman. Pharmaceutical companies negotiate to get their medications on the formulary—that’s the list of medications an insurance plan will cover. (Sometimes that comes in the form of discounts, but, as we noted in November and in my story above, those discounts are not always passed onto the patient.) The insurance companies then put medicines on shelves, so to speak, sorted by price. The most expensive meds go on the highest shelf, or tier, and that means the patients pay the most out of our own pockets – the copay. Placing cancer medications on these tiers may require patients to pay up to 50 percent of the cost of our cancer therapies.

It doesn’t have to be that way. Yes, it is expensive to discover, develop, test and market new targeted cancer medications, but according  to University of Chicago economist Tomas Philipson, writing in Forbes, “specialty” medicines are projected to remain below 10 percent of total healthcare spending by 2020. So we count on the insurance coverage, with premiums paid by many people, to give us the most help with these essential medicines, not put the burden on our shoulders in the form of a co-pay, or put the heaviest burden on some of the sickest people, cancer patients.

IT’S MY PROBLEM TOO

Friends, I too wrestle with co-pays as noted above. Mine are high and I’d like to do something about that. But politicizing healthcare, doesn’t help.

I was diagnosed with CLL back in 1996, followed by a second cancer, myelofibrosis, in 2011. But I’m active and with my wife Esther, I’m busy managing Patient Power. That’s possible only because I have access to new, targeted medications that help keep the cancer in check without debilitating side effects. My first priority is to maintain a flow of these medicines, newer medicines for when the effectiveness of my current medicine wanes and perhaps new immune approaches such as CAR T-cell therapy that may offer a cure.

Yes, let’s work to keep medicines and medical advances affordable and return to investors reasonable.  We have to recognize that blaming a pharmaceutical company that developed a life-changing medication is not the only “piece in the puzzle”.  We need to address the enormous co-pays the insurance companies impose in the discussion mix.

So back to that woman complaining about $19,00 a year out-of-pocket? Now we know where that expense really comes from – and a 360-degree view of who has to be under the microscope if we really want to fix the problem.

— QUICK FOLLOW-UP —

In our last report we talked about the fight for oral drug parity, and the need for federal legislation to apply equal reimbursement to MEDICARE.

H.R.1409 – the Cancer Drug Parity Act of 2017, is pending in the Congress, but we’re not there yet. This would cover health insurance plans not regulated by state law because they are covered by the Department of Labor Employee Retirement Income Security Act (ERISA)—generally speaking, these are health plans in private industry. But it’s complicated. Probably the best way to know if your plan is covered, is to just ask. But—bottom line—we still have a long was to go to get to equal oral and IV reimbursement under Medicare. Tell your Congressman—or a potential new one you may help this year—oral parity is important to you.

As always, I welcome your comments and your own story of financial and drug access battles. Write to me at comments@patientpower.info.

Andrew Schorr
Co-Founder, Patient Power LLC


Editor’s Note: This blog was written by Andrew Schorr and was originally published on Patient Power here: https://www.patientpower.info/prescription-co-pays-one-piece-in-a-very-complex-puzzle

Patient Profile: Jennifer Maxfield

Patient Profile

Jennifer Maxfield

Cervical Cancer

Jennifer Maxfield describes herself as a very private person. It’s hard for her to share her story. It’s emotional and it’s out of her comfort zone, but she’s starting to get a little more comfortable with it because she likes the idea of helping others. “That my story may be beneficial for someone else down the road is kind of cool for me,” she says.

If heeded, her story really is likely to help others. Hers is a cautionary tale, because her cancer is one that may have been preventable. She was diagnosed with cervical cancer in 2016. She’d gone to the doctor on her lunch break for a routine gynecological check up and during the exam Jennifer recalls the doctor saying, “Whoah. That’s strange.” Her doctor brought some colleagues in to confirm her hunch and Jennifer was immediately referred to a cancer specialist.

A runner and avid tennis player, Jennifer was young and healthy and never expected a cancer diagnosis, but, “I’m healthy,” she says, “not diligent.” You see, it had been a few years since Jennifer had been to see a doctor. It had been long enough that even her boss noticed and it was at her boss’s suggestion that she’d gone for her exam that day.

The good news was that it was a relatively slow-growing cancer and it was isolated. Jennifer’s doctor felt positive that after treatment there would be no recurrence. She wouldn’t need chemotherapy and radiation, but she would need a radical hysterectomy. “It was the absolute recommendation,” Jennifer says. There was another surgery option, but due to the size of her cancer, the success rate was compromised and the cancer was likely to return and then spread. Neither Jennifer nor her doctor wanted to take that risk. Her surgery was October 2016, three months after diagnosis.

But, here’s the thing, Jennifer was 33 at the time she was diagnosed. She hadn’t yet had children and a hysterectomy meant she would not be able to get pregnant. That’s where it gets emotional for her. “That was the scariest moment when all my family left, when the doctor left and I was there coping with this drastic change,” she says. “It was a high price to pay.”

Jennifer doesn’t want anyone else to have to pay that price. She stresses the importance of going to the doctor for regular check ups, but she also emphasizes the need for awareness about the the human papillomavirus (HPV) which is the likely cause of her cancer. “It’s something kids can get vaccinated for,” she says. “You can prevent it.” Jennifer says she knows the vaccinations aren’t right for every family, but she hopes people will talk to their doctors and ask about the risks and possible prevention options for HPV.

Every once in a while the magnitude of what she had to give up strikes her, “but I don’t let myself get weighed down by that one thing,” she says. In fact, she says she feels really lucky and thankful for her family and her support network and she’s looking forward to her twin sister starting a family. “I’m hoping my sister gets pregnant,” she says. “I’d love to be an aunt.” She also hasn’t given up on motherhood. She and her sister are adopted so that feels like a very real option for her at some point.

In the meantime she sees her doctor every three months. At the two year mark she’ll do check ups every six months. She’s returned to running and tennis, she’s gone back to school, and she’s moving forward. “I just love my thirties,” she says. “I’m grateful for every single thing.”

Empowered Patient Nejat

Nejat is a 28-year student majoring in public health who attended our Digital Sherpa Workshop in Philadelphia, PA. After she shared her inspiring story with us, I asked if I could interview her to share her story of empowerment with you.

Kara: Why did you decide to study public health?

Nejat: I really decided to apply for public health because I wanted to do nursing but felt that I couldn’t get in. I never thought I would end up loving public health so much. It really helped me understand so much of my health. It really taught me how to advocate for myself. I am planning to apply for nursing school soon.

Kara: How and when were you first diagnosed?

Nejat: I was sick in January of 2017, the doctor told me that I shouldn’t have came to the emergency room for stomach pain.  He didn’t give me a CT scan, he tried to prescribe something for pain but I left after being upset. I had emergency surgery in March 2017 after I got sick in the morning and couldn’t stop throwing up. They told me I had a half cyst and half mass. Which measured about 17cm in my stomach The mass had immature germ cells which was considered cancerous.  I started chemo July due to being put on surveillance so when it started regrowing chemo therapy was the second step. I did 12 weeks straight of chemo. B.E.P was the regimen.

Kara: What does being an empowered patient mean to you?

Nejat: It means to go to the doctors office and know exactly what is wrong with you. To understand the options of treatments available. To request a second opinion and feel like you have a choice. To take control of your health and healing.

Kara: How did you know that you needed to advocate for yourself?

Nejat: I never liked not knowing what was wrong with me. I would research and read forums day and night. When doctors tried to plan according to what they felt best I always tried to understand it so I could figure out if it was best for them or me. Most doctors would tell me things off of research. During chemo most of what I experience was different than what they seen in research. I felt like if I never opened my mouth and spoke often. Those 12 weeks would have really been worse. Each new word I went back and googled the definition. Each symptoms I looked up. I dictated what I wanted and I can say it worked great in the end. I am on the road to recovery

Kara: How do you navigate advocating for yourself?

Nejat: I ask for options. I google everything, I look at forums. I join and ask questions.

Kara: Do you think that it is important to find a doctor that you feel comfortable?

Nejat: Yes! I had a doctor tell me she had to do surgery which didn’t align with what my other doctor told me. I told her no and went to a different doctor which gave me options. I felt that she didn’t hear my voice. She didn’t give me options. Yes I’m sick but let me feel I still have a little control of my decisions.

Kara: How has managing your condition affected your daily life as a college student?

Nejat: It starts with your mind set. I have been positive through out my journey. I am determined to not let my hardships be the reason I fail. I have my bad and good days but I try to keep pushing. I am still in school and a few months away from graduation. Though I’m still recovery I’m pushing. I do acupuncture to help my neuropathy and vitamin C to heal rebuild my body.

Kara: What are your tips to help someone become an empowered patient?

Nejat: Start with thinking positive you can make your journey less stressful with thinking positive always look for second opinions if you can. Trust how you feel and never look at cancer as if it’s the end keep fighting.

To Open-Kimono, or Not to open-Kimono? That is the Question.

“Enthusiasm for a cause sometimes warps judgment.” – William Howard Taft

When someone finds themselves on the receiving end of a diagnosis for something like cancer, the first thing they want is information. After that, they want someone to talk over that information with who will help them process it.

As much as the shared decision making process is discussed in the clinical community, most of the teaching, and learning, required for shared decision making happens outside the clinic. Google searches, community conversations, face-to-face or digital support groups – all of these help the person facing the diagnosis figure out how to make those decisions.

This leads to a conundrum for every patient who finds him/herself confronted with something that requires complex decision-making, like cancer: how much do I share, and with whom? How do I know who I can trust with my medical information?

Thankfully, the clinical side of the house has gotten savvy about social media. Many doctors, nurses, and other medical pros have started recommending online groups to their patients as resources; my good buddy ePatient Dave even credits his primary care MD, Danny Sands, with saving his life by referring him to an online forum for kidney cancer patients when Dave was diagnosed with Stage IV cancer back in 2007.

However, the individual patient still needs to decide exactly how much, and what, to share with other people beyond their clinical team, be it online or in person. That requires a set of decisions of its own. Here are the considerations:

  • Is this a public forum? If so, I recommend only making connections with individuals, and then taking any discussion to a private setting. In other words, if it’s a Public or Closed Facebook group, don’t put your diagnosis in a comment, or a post. Ask general questions, such as “does anyone know what to expect from [chemo cocktail]?” or “who knows anything about [type of surgery]?” Then, invite community members who answer to move the discussion to email, or a phone call.
  • Who owns this community? For those who are new to online patient community membership, it can be a big surprise to find out that a number of patient communities are funded by industry. It’s important to dive in a little bit on who’s running the forum, even in a Facebook group. I’m not saying that all industry money is dirty, but I do recommend knowing who’s paying the bills before you start sharing personal health information.
  • Does the community have clear standards of conduct? This goes beyond just “don’t flame people,” this should also include rules about recommending any specific medical treatments, and about talking up non-scientific “options” (code for snake oil or quackery) for addressing whatever health issue is the central focus of the community. There also should be clear “what happens here, stays here” rules about disclosing anyone’s personal information – health status, contact information, anything – outside the walled garden of the community.

If you’re looking for a cheat-sheet on patient communities, my previously-mentioned buddy ePatient Dave deBronkart has put one together that’s pretty comprehensive: Patient Communities – a starter list.

How much, and what, you disclose about your health issues is up to you. You will have to be very open-kimono (gown?) with your medical team, but be careful how much, and to whom, you get open-kimono with outside of the clinic. Patient communities can be hugely helpful – just make sure you know you can trust that community to honor your privacy while helping you make big decisions about your health, and your life.