Partners Archives

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

Clara Health – #PatientsHavePower

We are proud to announce that we are official participants in the Patients Have Power campaign run by Clara Health. Clara Health believes that all patients should have the power to access the most advanced healthcare available. But they understand that getting started on the journey can be overwhelming. So, they built Clara to be the simplest, fastest, most patient-friendly way to connect you to the newest treatment options.

This campaign is a Boston based initiative aligning the world’s epicenter of healthcare around one message: Patients Have Power. The movement is comprised of patients, caregivers, allies, nurses, doctors, researchers, members of the healthcare workforce and anyone and everyone who believes in patient power all around the world.

Patient Empowerment Network believe patients should be empowered with the knowledge and resources they need to hold the ultimate power in their healthcare journey and are proud to say that we live the mantra: Patients Have Power.

Interested in getting involved? Show your support by participating in the following:

  1. Declare your support: Join our #PatientsHavePower campaign on Twitter. Click to tweet.
  2. Join the Thunder: Add your voice on Thunderclap to help the message spread! Register here.
  3. Twitter Chat: Join the #PatientsHavePower chat on Thursday, September 7 at 3:00 PM EST.
  4. Patients Have Power Signs: On Thursday, September 7 take a picture of yourself holding up a Patients Have Power sign and share on social media.

Spotlight on: MPN Cancer Connection (MPN-CC)

Interview with David Wallace, publisher of PVReporter, founder of MPN Cancer Connection (MPN-CC), and PEN Advisory Board Member. In this interview, David explains why he started a non-profit, his goals, and some of the obstacles he has faced so far.

Kara:

Why did you decide to create MPN Cancer Connection (MPN-CC)?

David:

MPN Cancer Connection was launched as a non-profit in 2015 to provide a channel for generating financial support for PV Reporter. To fully advance our cause, primarily patient education and advocacy and make it sustainable, financial support would be a necessity. The website and associated expenses were run 98% out of pocket for 2 ½ years. I also felt it was important to promote MPN awareness as a cancer, providing patients benefits and programs that would not otherwise be available.

Kara:

How did you decide on the non-profit route?

David:

The non-profit route looked like the best logical solution to our financial issues. I had several potential donors, mention they would be willing to help out if the benefits of a tax deductible donation were available. I was also more comfortable pursuing sponsorship, partnerships and other projects by going the 501©(3) route. Somehow, I believed if I chose this direction, it would lead to success. Early indications are moving the needle in the green zone.

Kara:

When starting PV Reporter and MPN-CC, what were your goals for both organizations?

David:

That’s a great question. For PV Reporter I had several goals in mind. First of all I wanted to create a website with “easy access” to pertinent information on MPN’s, in an easy to navigate format. The website was built around the “custom MPN search engine,” MPN Search. I wanted the articles to be “patient friendly,” easy to read and understand without having to search for definitions to complex terminology. I also discovered an opportunity to “share the pulse” on topics of interest I found frequently discussed in the Facebook forums. I had no idea PV Reporter would take off like it has running into the 3rd year in August 2016.

The Five Year Vision for MPN-CC can be found on our website.

Kara:

What are some of the obstacles you faced when starting MPN-CC?

David:

The biggest obstacles were funding and “know how” to start a non-profit. My first call was to an attorney who wanted $5000 to assist on the paperwork. That was rather dejecting (that’s putting it mildly), but I kept looking for affordable assistance. I was fortunate to find a super nice lady, Julie, who runs a nonprofit consulting firm, profiled in one of our small local newspapers. After our first meeting at a nearby coffee shop, I knew she was the mentor I needed. She believed in me, my cause and understood the benefit I was providing patients through PV Reporter. Without her guidance in walking me through the tedious paperwork process, I might have thrown in the towel.

Over the last year and half, I attended two non-profit conferences. This offered a great learning experience and opportunity to network. Learning to run a non-profit while keeping PV Reporter on the leading edge has been a major challenge.

Kara:

How do you fund your non-profit?

David:

A very loyal PV Reporter reader from the early days came in with a generous donation that helped cover some of my initial costs and provided the motivation I needed to know I was on the right path. Several friends/patients have also shown their support as well. I am most appreciative, as they were the cornerstone that provided the means to keep my projects moving forward.

In July 2016, I landed an advertising sponsorship on PV Reporter that should ease the funding burden for a while, allowing me to create new patient resources and programs. I also intend to seek additional sponsors, grant opportunities and other sources of funding.

Kara:

What have I learned from creating PV Reporter and MPN-CC?

David:

First of all, I found myself in a role that was totally new as a patient leader/advocate. I realized how much I learned from other patients over the years and how important it is to give back to the MPN community.

Cultivating a supportive core group of fellow patients and partners were instrumental to the success of PV Reporter and MPN-CC.

Kara:

What are your near-term goals?

David:

I have a number of them; the most basic is continued existence of both organizations. One of the most important goals is for me to connect with knowledgeable individuals in the non-profit space in order to outsource certain responsibilities. Bookkeeping was the first area I took on help with. Lord knows, I have enough to learn and becoming a QuickBooks expert was not high on my list.

I recently started a project with a non-profit consultant who is helping me put the pieces in place for growth and sustainability. If things go according to plan, I believe we will accomplish our goals and be able to expand our reach.

The Effects of Chemo and Ovarian Cancer

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.
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Had my first chemo January 20th. LOVE the pre-chemo “cocktail” they give. Relaxed me so much I slept through most of it. First four days after were fine. Next four, lots of nausea and threw up a few times. Doctor added two more anti-nausea meds and finally got it under control.

Using two chemo drugs; Carboplatin and Taxotere.

Two weeks after the first chemo my hair started falling out. Nausea and vomiting I can handle. Being tired a lot I can handle. Fingertips tingling I can handle. Hair falling out by the handful……..that was just demoralizing!

I put up with it for two days. Then, we shaved my head. I do mean WE. Went into work and sold raffle tickets. Winning ticket pulled got to shave my head! It was hilarious! Got pictures and lots of video. Plus, raised $322 to help with expenses, which I really needed.

My “work son”, Andrew, was the winner. Worked out good that way, I think. His mother is going through chemo for breast cancer, started losing her hair and shaved her head. He was having a hard time dealing with that. Shaving my head seemed to give him a new perspective.June TD quote

I freely admit, if I’d shaved my head at home by myself, I’d have bawled my eyes out the whole time. But, doing it at work made it easier. Everyone was cracking jokes and laughing….it was more like celebrating a milestone than doing something that was a reminder of something bad.

One thing I’ve noticed is that the “stubbies” don’t fall out as easy once they die as full strands do. Then, when I put on a scarf or hat, they get shoved down in the hair follicle and it’s uncomfortable. BUT, I found a great fix for it: LINT ROLLER! Yes, after my shower, I stand in front of the mirror and take a lint roller to my head. And laugh myself silly the whole time!

Turns out, I don’t look bad bald. So, I’ve opted not to bother with a wig. I use a scarf or hat outside, but go au natural indoors. And, I have to admit, I love how much time I’m saving in the shower! Especially on the days when I have no energy!

Second chemo was February 10th. Used my chemo port for the first time as well as an IV. That was interesting. And they gave me some kind of IV anti-nausea meds since the first dose hit me pretty hard. Worst side effect this time was that it messed with my taste buds. For about 10 days, all I could taste was sweet stuff. Couldn’t taste meat or spicy anything. Talk about frustrating! Grrrrrrrr!!!!!!!

Took the long way home afterward. Was stopped right next to a police officer at one light. He had about as much hair as I do right now. So, he’s looking over at me, I’m looking over at him…..we both were grinning at each other. Very cute moment.

MyLifeLine: Learn About Clinical Trials

Editor’s Note: This post was originally published here on MyLifeLine.org. The mission of MyLifeLine.org is to empower cancer patients and caregivers to build an online support community of family and friends to foster connection, inspiration, and healing through free, personalized websites.

Learn About Clinical Trials

MLL ACT

Why consider a cancer clinical trial?

What clinical trials can offer, from the care you receive to the impact you can make.

Clinical trials offer a chance to receive investigational medicines or procedures that experts think might improve the treatment of cancer. This important option is not limited to people who have run out of choices. In fact, there may be clinical trials for every stage of disease in dozens of cancer types. In this video, patients and doctors share their perspectives on why joining a clinical trial may be an option worth considering.


“To have the opportunity to go on a clinical trial for a patient is extremely exciting.” —Sandra Swain, MD; oncologist


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Concern:
I don’t want to be a guinea pig for an experimental treatment.
The Truth:
Cancer clinical trials are developed with high medical and ethical standards, and participants are treated with care and with respect for their rights.

Concern:
I’m afraid i might receive a sugar pill or no treatment at all.
 The Truth:Cancer clinical trials rarely use placebo alone if an effective treatment is available; doing so is unethical.

Concern:
Cancer clinical trials are only for people with no other treatment options.
 The Truth:Trials can study everything from prevention to early- and late-stage treatment, and they may be an option at any point after your diagnosis.

Concern:
I’m worried that I won’t receive quality care in a cancer clinical trial.
 The Truth:Many procedures are in place to help you receive quality care in a cancer clinical trial.

Concern:
People might access private information about me if I participate.
 The Truth:In nearly all cancer clinical trials, patients are identified by codes so that their privacy is protected throughout and after the study.

Concern:
I’m afraid that my health insurance will not help with the costs of a cancer clinical trial.
 The Truth:
Many costs are covered by insurance companies and the study sponsor, and financial support is often available to help with other expenses; talk to your doctor to understand what costs you could be responsible for.

Concern:
Informed consent only protects researchers and doctors, not patients.
 The Truth:
Informed consent is a full explanation of the trial that includes a statement that the study involves research and is voluntary, and explanations of the possible risks, the possible benefits, how your medical information may be used, and more. Informed consent does not require you to give up your right to protection if the medical team is negligent or does something wrong.

Concern:
I’m afraid that once i join a cancer clinical trial, there’s no way out.
 The Truth:
You have the right to refuse treatment in a cancer clinical trial or to stop treatment at any time without penalty

How to know if a cancer clinical trial is right for you.

There are many factors to keep in mind when considering a cancer clinical trial.

As with any important decision, it’s a good idea to think about the risks and benefits of joining a cancer clinical trial. This video encourages you to ask your medical team about all of your treatment options, including cancer clinical trials. Trial participants, doctors, and patient advocates explain the factors you’ll want to keep in mind as you consider your treatment plan.


“I’ve always advised patients…when the circumstances weren’t urgent, to take time to understand their disease and to evaluate the alternatives.”  —Sandra Horning, MD; oncologist and chief medical officer


What to ask your doctor(s)

Asking The Right Questions Keeps You Involved In Your Care

A cancer diagnosis is often overwhelming, and it’s sometimes hard to gather your thoughts and know the right questions to ask. This video talks you through some of the questions it will be helpful to ask about your cancer, your treatment options, your doctor, and about whether participating in a cancer clinical trial is right for you.


“Talk to your doctor and say, ‘Tell me my full options.’ Raise questions. Be a pain in the neck. That’s what the doctor is there for.” —Arthur Caplan, PhD; medical ethicist


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Rules And Procedures Are In Place So That You Will Receive High-Quality Care

Before a single patient can join a trial, many different experts must approve every detail of the study—from why it’s being done to how often patients should be monitored. Once the trial begins, more unbiased experts provide oversight to check that the rules of the trial are being followed and patients’ rights are protected. This video features doctors and patient rights advocates explaining the high standards by which trials are developed and run.


“I explain…that when they’re on a clinical trial, they’re going to be followed very closely by…specific guidelines.” —Daniel P. McKellar, MD; surgeon and Commission on Cancer chairman


Informed Consent Describes The Study Process, Potential Risks And Benefits, And Your Rights As A Participant

If you are eligible and decide to join a trial, you will be required to review and sign the informed consent forms. This can be an overwhelming process, but it is how you will learn all the details of the trial, including the potential benefits and the possible risks, and give your permission to be treated. This video features patients, doctors, and patient rights advocates who offer tips and insights to help you navigate the process of informed consent.


“When I received the stack of papers…it made me realize this is really serious. But then…it was actually a good feeling to know that this was not something that was being done lightly.” —Rose Gerber; trial participant


Information And Support Are Close At Hand

Because so many people have been affected by cancer, there are many reliable and helpful resources to help you through your cancer journey. In this video, trial participants and doctors help you find the people and resources that may be helpful in educating you about cancer clinical trials.


“The first thing is to hold on tight and be optimistic and to get very engaged and educated about your cancer.” —Jack Whelan; trial participant


Reliable Resources To Help Along The Way

First, talk to your doctor

Your healthcare team is the best source for information about your treatment options, including cancer clinical trials. There are many questions you’ll want to ask your healthcare team when you’re ready to discuss treatment options. Print this helpful Discussion Guide and bring it to your next appointment so that you don’t forget anything important. Record your answers on the form and keep it handy for future reference.


Where to find information about cancer clinical trials

These clinical trial resources will help you find trials that might be right for you.


Support services

These trustworthy sources provide assistance with trial-related costs, which may not always be covered by insurance.

Practical support

Financial support

Additional nationwide support organizations


Don’t go it alone

There are millions of people just like you who are ready to ACT against cancer. These organizations provide advocacy, information, awareness, fundraising opportunities, and a community of like-minded people touched by cancer.

Living with Breast Cancer – A Patient’s Treatment Diary

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Today I turn 42….not up for celebrating at all…but grateful for the loving and warm messages from friends and loved ones around the world and from home. Grateful hubby and my mom are here with me.

Had a bout of feeling sick this morning and had to cancel my appointments. Feeling better now…hope it was just nerves and nothing else…as need to be STRONG and ready for Round 2 chemo this Saturday.
I think it should be better this time as I know what to expect in some of the side effects from Round 1 and feeling physically stronger and wounds are healing better.

I’m newly married – 1+ years. Diagnosed with breast cancer end of May and underwent a right Apr TD BCmastectomy multifocal tumor, with removal of 21 lymph nodes. I had an immediate reconstruction with TRAM flap procedure on June 13 and started AC chemo July 26. 12 weeks – every 3 weeks cycle. 6 months of chemo in total: AC and Taxol + Herceptin (weekly for 12 weeks after AC). Then Radiation daily for 5 weeks + 5 years of Hormone Therapy. My sister found this site for me as she realized that I have had limited contact with support groups here in Hong Kong due to limited English speaking groups. I am from Canada, lived in Dubai the last 5 years where I had met my hubby and we moved to Hong Kong a year ago.

I have been thriving on the words of those who can relate to my experience, well wishes and positive outlook! I just had a Reiki, Osteopath session and physiotherapy today. Needed it! Think my nerves are a bit shot….thinking I wasn’t nervous but likely am in anticipation of my next doctor’s appointment and review of how I am doing. I’ve found meditating helps a great deal and my Reiki master suggested I meditate for a few minutes every day for 21 days….This continues to be a journey for myself and self-healing.

Fast forward a few months….

I have finally finished CHEMO!! YAY! And have now started Herceptin every 3 weeks for 8 more months and Tamoxifen for 5 years. Radiotherapy started today and it will be daily for 5 weeks. Was quite stressful…and arms got numb and sore.

Life is closer to normal that it has been for quite some time and I’m able to travel and enjoy a few pleasures. My visit to Phuket was good and much needed quality time with hubby. Last week I was at the Farm – San Benito in the Philippines for a wellness program. So good for my body and healing.  I’m officially a survivor and I hope to share with you, learn about your experiences, your advices, tips and laughter! Love and light

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Frederique’s Lung Cancer Story

This post was originally published on MyLifeLine.org. MyLifeLine.org Cancer Foundation connects MyLifeLine logocancer patients and caregivers to their community of family and friends for social and emotional support. We provide unique communication and stress reducing tools that allow patients and caregivers to share their journey and focus on healing. To learn more, visit MyLifeLine.org and check out the MyLifeLine.org blog.

Frederique was with her son when she started speaking strangely; she wasn’t finishing her sentences and her words weren’t making sense. She didn’t realize it was happening but her son was alarmed and contacted his dad and emergency medical services. The next day, Frederique learned she had tumors in her lung and brain. Her diagnosis was  Stage IV  lung cancer which had metastasized in the brain.

“We fear cancer so much as a society that when you find you have it, you just have to face it,” Frederique recalled upon learning her diagnosis. “The fear was gone.”

Two rounds of chemotherapy, two gamma knife sessions and three rounds of radiation were part of her treatment process over the two years she has been diagnosed , and she is now looking into a clinical trial.

Although she doesn’t know if she will ever be cancer-free, Frederique chooses to look at her cancer journey as an adventure, see the joy in her experiences and live a normal life. She does power yoga, exercises through hikes and walks, and even traveled to France, all while living with cancer.

“There is a disconnect with this diagnosis and how my body is doing. I really do live a normal life,” Frederique explained.

Frederique MLLEarly on, she created what she calls a “healing circle” to help her and her family throughout her cancer experience. She used MyLifeLine.org to share her story and coordinate volunteers.

“I think the technology is amazing. It helps me not only to receive support but also to give hope around me. Staying vibrant and positive throughout such a challenge seems to be inspiring for people. I am delighted that my experience can be of service that way,” she said.

Frederique’s advice for others facing a cancer diagnosis is to find a way to relieve the fear. “Cancer is such a fearful event, especially stage IV,” Frederique explained. “Find a way to ­not be scared of the disease. In my opinion, fear is detrimental to the healing process.” She keeps the fear at bay by meditating and connecting with the energy around her (yoga, chi gong, reiki), but she explained that anybody can find their own way of relieving the fear.

“I could live this journey in total fear and be in a dark mood all of the time, but then I would lose precious time. Yes, I have days where I am scared or sad but most of the time I prefer to live in joy,” Frederique said.

Thanks to the cancer, Frederique rediscovered herself, deepened her connections to others and shifted to a new understanding of the world. “I’ve never been happier, to be honest. I’m where I’m supposed to be now,” she reflected.

Stupid Brain Cancer!

Matthew Zachary

Matthew Zachary

(Matthew Zachary is a brain cancer survivor and founder of Stupid Cancer.)

Brain cancer. Those two words strike fear into the hearts of man perhaps more than any other cancer. After all, it’s your brain. Some might argue it’s the one thing you can’t live without. (Take that, heart!)

Now, I’m not one to start pitting body parts against each other in the world of cancer. I’ll leave that up to the body-part-specific groups. Let that infighting enjoy itself for all it’s worth. Once they realize that the future of medical research is rapidly shifting to biology, immunology and genomics, rather than geography, they’ll soon realize it’s the new bandwagon to hop on.

When I was a 21-year old college senior, I was diagnosed with a very aggressive form of pediatric brain cancer: medulloblastoma. There were only 200 cases a year, the tumor was congenital and it nearly always occurred under the age of 12. I was one of the rarest cases ever seen at the time; and that did not bode well.

What’s more, the fact that I was not a child presented even more unique complications than otherwise thought. As an emerging young adult, issues of college, fertility, relationships and mental health had to weigh in. They didn’t of course since it was the 1990s and the idea of “patient-centered care” was not a concept. Back then you were lucky to be alive to deal with whatever side effects you had, all for the privilege of not dying from cancer. And those were the magic words: the “privilege” of not dying.

Considering I was given six months to live and, after those six months, a whopping 50% chance to survive for 5 additional years, I’ve done alright. January 10th, 2016 was my 20th cancerversary in somehow defying the odds. There is no rhyme, reason or explanation for how this all came to be. I just got lucky.

And that’s all anything is, really. Luck. Good luck or bad luck, it’s still luck. Yes, there are conscious choices we believe we can make, but, in the end, we are all bound by the singular commonality of chance. Call it what you will: karma, God’s will, fate, metaphysics, destiny, etc…all we have is our free will and the privilege to make choices in response to shit that is happening or in advance of shit that may happen.

Which brings me to my point. (I actually had a point, I promise)

I founded Stupid Cancer because I wished I had that kind of resource at my disposal when I was depressed, alone, afraid and without peer support. I didn’t even know that peers support was a thing. “You mean there are other college students out there with cancer who understand what I’m feeling right now?” What a concept.

It’s easy to say that no one should face cancer alone It’s entirely another thing to actually fill that need. Stupid Cancer was the community I needed that I never got to benefit from. And going back to my aforementioned comments about “all cancers matter”, I really didn’t care if I were connected with a young adult with leukemia, breast cancer, colon cancer or brain cancer. For young adults — a largely unknown demographic in the war on cancer — the playing field is leveled when you’re told those three words, “You have cancer.”

Stupid Cancer is entering it’s 9th year of operation and has proudly emerged as the largest support organization representing teens, adolescents and young adults (15-40). We’ve also inadvertently become a home for the hundreds of thousands of pediatric cancer patients who survive and grow up. It has become a remarkable nonprofit brand in healthcare that has democratized survivorship. Because, no matter your diagnosis, you have the right to survive with dignity, quality and be treated age-appropriately.

In 1996, that did not happen. In 2016, 1.7 million Americans will be diagnosed with a primary cancer. 80,000 of them will be children and young adults. We are no better or worse than other age groups; we’re just different.

And we matter.

Cancer survivorship is an art. And the art of your survivorship is how you choose to get busy living, The era of cancer survivorship has begun. It is not about how long you live, but how you live, that defines your legacy in this life.

So for now, I’ll leave “cure-hunting” to everyone else.

Real Stories of Lung Cancer

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.Treatment-Diaries-logo-300x88

Caregiver 1: Female caring for Male with NSC Lung Cancer

My husband’s last scan was terrible. Everything that had once been invisible on previous scans had grown dramatically, and there are new nodes and tumors. He will get a port for Christmas, and start 2 new types of chemo by Jan. 1.

This is difficult to deal with for everyone. It was like we were able to live in a form of denial for quite some time. Not anymore….

He was diagnosed with stage IV non-small cell lung cancer a little over 2 years ago. He will start on a Carboplatin/Taxol combination. He will have a port installed just after Christmas, and begin the New Year with his 1st round of 6 cycles. So far, he hasn’t had radiation because it everywhere, so they have been trying to get it under control systemically.

I am so blessed to have a husband who, despite all he is going through, still tries to make life as easy for me as possible. I am so thankful for a wonderful family.

Patient 1: Female (USA) Lung Cancer

I have been thinking of making a journal about my health issues and here it is. This is great. I had cancer surgery almost 15 years ago and I have been cancer free and relatively healthy ever since. This last Oct. my illusion came to an abrupt halt. My lung specialist said I had a mass in my left lung and it needed to come out. Ah you said what??? He sent me to a Thoracic Surgeon and he was ready to sign me up for the next opening. I felt my stomach turn and I said I needed to see my Primary Care physician. I saw her a week later and told her I wanted to wait and see. She agreed and told me about a blood test that would screen for cancer. I had the test and it says I don’t have any Cancer in my system. I decided to get another opinion this time at UCSF. This is where I had my Lung Cancer surgery done in 1996. I am waiting for my appointment. It is in the middle of Jan. I don’t understand how well respected and learned doctors can do this. I have had two Dr. and a blood screening say they were wrong (and I’ll eat my hat if they’re right) but they insist the mass is cancer. I hope everyone gets second and third and fourth opinions. Well we shall wait and see. Thanks for the opportunity to say my peace.2nd opinion

My Cancer fears were gone once I had my surgery in 1996. I really never gave it another though. I did have yearly CT scans and they were consistently the same. I was well aware of the scar tissue present but I was a smoker. I was a hairdresser, used a lot of chemicals that are labeled dangerous. And I was a sun goddess and a swimmer and lifeguard. Again not very good conditions if you want to be cancer free. For any cancer!

I returned home from UCSF with the same old story. Let’s watch and wait. I will get another CT scan in 6 months and just go from there. Other than that I sure enjoyed being in San Francisco. I really love that town. I am feeling good and I will be doing life as usual for now. I started doing square dancing once a week and I will rejoin the gym. I hope everybody is feeling well and continues to have happy thoughts for their new year. 🙂

Well, I have missed the last two weeks of SD. I keep running a fever and feeling sort of sickish. I don’t want to be a rabbit out of the cage and push myself. I’m not in a race. I will rejoin the gym ASAP. I still haven’t heard from my doctor as to what she thinks is the next plan. I’m not too sure I will keep her as my primary Dr. She is way to controlling and this freaks me out. She works for me. I think more doctors need to remember they are working for their patients and any decisions need to be mutually agreed upon and that they are not the ultimate authority. I feel like she wants me to do everything her way and that I’m not her… Oh well, I did my will today and that went well.

Patient 2: Male (Malaysia)

Diagnosed with Stage 4 Non-Small Cell Lung Cancer, hv chemo treatment with Carboplatin + Taxol (6 cycles)2008 ; Tarceva (21/2 months)2008/2009 ; Cisplatin + Alimta (3 cycles) 2009; Alimta only (3 cycles) 2009 ; Alimta only (2 cycles) 2010.
Have experience Lung collapse and drain out fluid from lung in 2010.
Treatment not manage to reduce the quantity and size of tumor, but, manage to have it under control with no major changes for the total quantity and size since diagnose until now.

I proceed with chemo and this round I decide to use back the same drug that I use last year, Gemzar and Navelbine.

All went well after chemo I feel good and suddenly, situation changed and I started vomiting for 3 days, thereafter I felt very tired and I started to loss balance while walking. So, decided to proceed to hospital on. With blood test report, doctor ask me to admit hospital, as my Sodium is very low, it’s the cause of tired and dizzy, then my hemoglobin is low too, so, cannot proceed for chemo.

After all the paper work, I admitted and taking two bags of blood transfusion, then, follow by dripping of sodium water. On second and third day, they took my blood again, too bad, both show that no improvement on my sodium level, but, lucky that hemoglobin n RBW is getting so much better.

After 4 nights in hospital, I requested doctor to allow me discharge, no doubts I am not recover from short of sodium, but, I feel so much better. Finally doctor agreed and discharge me with sodium tablet.

Since back home, I feel good and I have regain my appetite, I really eat and enjoy.

Life goes on – I don’t think of I will ever rest from Chemo treatment for 5 1/2 months. Beside of the back pain disturb me, some breathless at times, basically, I have no complaints.

lung cancer ribbonI have delay my CT scan since April this year and finally got it done two days ago, and yesterday meet up with doctor to discuss about the result of scan. Overall, not much changes to my brain and bone, consider stable. But, compare with previous scan, tumor in lung show some 30% progression. Doctor advise me to proceed for Chemo by next week to get situation under control. Tentatively scheduled for early next week. Anyway, there are things for me to consider and I pray to Lord to guide me and show me the way for the treatment. My main concern is back pain that disturb me almost every night with the pain moving from one to another place at my back. Life now is with daily pain killer and because of the continue taking pain killer, I often feel tired / weak.

Spoke to doctor about getting opinion from Orthopedics to have some idea is the pain due to my spine, but, doctor told me that it is not necessary.

Well, I will arrange appointment with doctor in another hospital and have fix it on coming Monday, hopefully can have some solution. Life goes on, but, no more normal for the last couple of weeks and I hope that Lord will take away all the pain and restore my body with strength and energy.

No worry be Happy. Believe and have Faith.

 

 

Real Stories of Pancreatic Cancer

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.Treatment-Diaries-logo-300x88

Patient 1: Female (Canada)

This is my first entry. A friend directed me to a related site today, and somehow I ended up here. I was given the pancreatic cancer verdict the end of last year – after months of testing and being told ‘whatever it is, it isn’t cancer’. Ha! So much for the – it isn’t cancer theory. I was referred to a world class surgeon in Toronto early this year who was able to do a Whipple procedure, removing about a third of my pancreas.

Initially he thought he got it all. However subsequent scans revealed the original cancer had metastasized into the liver. So then it was off for chemo. What a nightmare. Again, an excellent oncologist at an excellent facility. I was put on the 5-FU regime (how appropriate is that name!) from May-Nov. Twelve treatments in total. Nearly killed me. I don’t think I have ever felt as ill as I did during the 2 weeks between treatments. Just began to feel normal when it was time to begin all over again. But, by the end of the year my tumors had reduced considerably, and my oncologist considered me his poster girl. We all knew the reality of pancreatic cancer.

However, by the end of February the party was over. The tumors were back. So another hit of 5-FU. This time the drug concoction plus the accompanying steroids, triggered bleeding abdominal ulcers. It was decided to discontinue 5-FU. I am now receiving Gemcitabine, a less aggressive treatment. I feel I’ve been given a reprieve chemo-wise, but only time will tell if this will work for me or not.

I would be very interested to hear from anyone with pancreatic cancer. I am blessed with a wonderfully supportive husband, family and friends. Life is good. But I hate this disease with a passion. Acceptance of it is not in my vocabulary.

pancan

Patient 2: Female (USA)

Just found this site and today is my first entry. I was diagnosed the end of June with inoperable pan can. I went through an experimental drug trial for Tnferade in the fall. It was absolutely brutal….and did nothing as far as we know. My tumor has remained basically “stable” since my diagnosis, with my current treatment of gemzar every other week. The gemzar really knocks me down for a few days, but being as I’m still “stable”, I guess it’s worth it. Early September of this year I spent two weeks in ICU, as all of my treatments/drugs created a 5cm duodenal ulcer……Had no idea I had it until it began to bleed profusely…..10 pints of blood later, I’m still here. Back to work now, but only three days a week. Absolutely dreading the winter, having lost 50lbs since this started I don’t have an ounce of fat for insulation!

Feeling so much better since the ulcer was taken care of! I believe it has been a undetected problem for quite some time, but how would you know….I mean was I having a lot of abdominal pain…yes….but I have pan can so how do you differentiate? Best of all I am sleeping better. Prior to the episode, I was usually only able to sleep two hours or so at time! Now my sleep is nearly “normal. I had plans to go to Vegas with my family in October for a family wedding….but of course was side lined by the hospitalization. Was able to rebook my husband’s ticket and mine for the first week of December and am excited at feeling well enough to have a good time…..and have some nice weather, if only for a weekend!!! Of all the compromises this illness has forced upon me, not being able to tolerate traveling much has really been one of the worst things since I got sick. Prior to getting sick I travelled the world extensively. I have plans to celebrate my 50th birthday this March in London…and soooooo hope I will still be well enough to do it!

Hello friends! Still here!!! Have gained back 25-30 lbs. and doing much better! Been off chemo for eight weeks now. The last round has damaged my nerves in my hands and feet. The doctors say they have exhausted all established tx options for me. pancan ribbonThis is not necessarily bad news, as the reason is more people in my shoes…don’t get this far. My last scan showed my liver mets are nearly imperceptible and the once very large head tumor itself shows a “residual”! They don’t have any idea what this means in the long run, and consider me a “lucky” anomaly. I am far from the person I was physically, before this started…but certainly grateful to still be here. I hope someone reads this post who has been recently diagnosed with inoperable pan can……I know that the odds are so very poor for most of us….but PLEASE believe there are cases like mine out there…..It isn’t always a 3-6 window. When I was diagnosed, I never expected to be here this long…26 months and counting. Not that I was being a defeatist or negative…..It’s just as a healthcare professional myself, I understood the grave reality of my situation. That said….we all MUST remember….ever case IS different and the best advice I can give is to always stay positive!!! Since I the first of the year I have begun to try to resume my life’s passion….regular travels. I have been to London twice, one in March to celebrate my 50th with friends from around the globe, and last month for a music symposium my husband was invited to attend. I plan on getting back to London in a month or two, and to Vegas in September!!! Anyways…thanks for reading…and stay positive!!! XOX

Patient 2: Female Caregiver of Male patient (USA)

Just little background… My husband, 54, was diagnosed with Stage IV Pancreatic Cancer last Sept. We went to have the Whipple procedure and found the cancer had spread to his abdominal cavity. He just completed his 10th round of Folfirinox. The treatment side effects have been continuing to get worse…. he sleeps most of the day and when he is awake he is in pain. His weight has gone from 220 to 150 in the last year and with his appetite gone it continues to go down. We have been holding on to the hope that once he completed 12 rounds of Folfirinox they would do another CT Scan and God willing the spots on his abdominal wall would be gone.

We thought he would then be a candidate for the Whipple. He has a tumor in the head and tail of his pancreas. Today we were told that wouldn’t be happening…. while I understand the reasoning (the lengthy recuperation period, the added weight loss and the overwhelming odds that the cancer would come back anyway) I am heartbroken. I had convinced myself that we were going to beat this. I never let myself think we couldn’t. I’m supposed to grow old with this man, our “golden” years…. we raised three beautiful children together, watched the oldest get married, watched them graduate and go their own ways…. it was supposed to be “our” turn. Our kids are 25, 26 & 30.

Today we had to tell them that time is limited. All I can hope for realistically is another wonderful five years… I really hope I get another 5 years.

 

Being Your Own Advocate

Tamara Lobban-Jones, Patient Power Producer and Lung Cancer Community Manager, and Lisa Goldman, a stage 4 non-small cell adenocarcinoma patient discuss why cancer patients need to be their own advocate.

They discuss the need for doctors and patients to communicate in new ways that respect the balance between a doctor’s expertise and patients’ own thoughts and knowledge. With the ever increasing developments in cancer research, it has become harder for oncologists to understand everything about each specialized form of a certain cancer. As Lisa points out, all that patients need to know about is their own cancer, so they can dedicate more time and energy into researching than a doctor may be able to. Being an active participant in your cancer journey is the best way to feel confident in your decision making.

Being Your Own Advocate from Patient Empowerment Network on Vimeo.

Activating a Community of People Living With Lung Cancer

Screen Shot 2015-10-22 at 5.16.16 AMNovember is Lung Cancer Awareness Month, and although lung cancer is the leading cause of cancer death in the world, the disease has long been stigmatized, leading to a sense of isolation for people already struggling with the considerable upheaval of a lung cancer diagnosis. Many living with this disease have said that connecting with others who also have a lung cancer diagnosis can inspire them to learn to “live with lung cancer.”

 

LVNG With Program

Through a new program called LVNG With (pronounced “Living With”), AstraZeneca, with the partnership of three leading lung cancer advocacy organizations (Bonnie J. Addario Lung Cancer FoundationFree to Breathe, and Lung Cancer Alliance), are activating a community of people living with lung cancer and their loved ones, to share their experiences and inspire one another. More than 100 people with lung cancer and their loved ones contributed to the development of LVNG With by sharing personal stories about their emotional journeys with lung cancer and their everyday lives.

Richard, who was diagnosed with lung cancer in 2004, conveys a sentiment that we’ve heard from countless people who are living with lung cancer and who contributed insight to this program: “I never imagined myself being an advocate for lung cancer. But I really do feel I need to be a voice. There need to be people who can speak out for lung cancer and give other people hope.”

Initial elements of the LVNG With program include a web site (www.LVNG.com), printed quarterly newspapers and live events, all intended to activate and connect those within this underserved community. We intend to add social media elements, such as Facebook and Instagram,  to continue to activate a community of people living with lung cancer and their loved ones. These channels will serve as another forum to share personal stories, posts, and images, and to invite people to post their own.

Following are excerpts from the personal stories you can find on at www.LVNG.com.

Dann’s Story

Dann, who was diagnosed with lung cancer in 2006, shared the following on Emotions:

“It’s important to do things that you feel give you some control. It feels totally out of control to be given this diagnosis, but there are things that are within your control.

“Exercise is one of those. It’s a mood elevator. It also is helpful to do all of the things that you can do to influence your treatment. Choosing which treatment provider that you have, choosing who you are going to involve in treatment.

“I’ve found that on the one or two occasions when I went to appointments by myself, it was much more stressful. So having other people share the experience with you is important.

“I feel a lot more deeply and I have a lot more awareness of my feelings. My gratitude for everything around me has grown exponentially. Stopping to smell the flowers is not just one of those clichés. I stop and smell the flowers, I stop to appreciate a couple of words that my secretary said when I walked by or that the sun is out today.

“There is so much more that I appreciate.”

Deena’s Story

Deena

Deena

Deena, who was diagnosed with lung cancer in 2012, shares the following perspective on Friends and Family:

“My relationships have changed, especially with my children. They saw a crack in Mom that was unexpected. I’m more fragile now than I was before. I was always the tough one, the disciplinarian. I had no health issues at all. The diagnosis came out of the blue for all of us.

“Our grandkids live a bit further away and we used to not see them as often, but now we won’t miss out on anything. There was a birthday party for our granddaughter and because her brother came down with a fever everyone else decided to stay out of the ‘sick house.’ We showed up anyway. I wanted to be there for every birthday party she wants me to attend.”

 

If you know someone who is facing a lung cancer diagnosis or may wish to participate in a live event in 2016, please share LVNG.org as a resource. We plan to add new stories to the LVNG With web site on a regular basis. If you wish to contribute a story, sign up to keep in touch.

 

John McCarthy

John McCarthy

John McCarthy is VP, Global Commercial Excellence, AstraZeneca

Spotlight on: LUNGevity – The Meaning of Lung Cancer Awareness Month

People who aren’t directly impacted by lung cancer may not know that November is Lung Cancer Awareness Month.

What exactly does that mean and what can people do during November to raise awareness about lung cancer?

Lung Cancer Awareness Month (LCAM) is a national movement originally created by lung cancer organizations, survivors and advocates to dispel the stigmas associated with having lung cancer and to raise awareness of the disparities in lung cancer research during the month of November. This is done in most part by making the general public aware of the lung cancer survival rates and lack of funding for research, and putting a face to the disease.

Most people don’t know that 1 in 15 people will be diagnosed with lung cancer and that over 60% of people who are diagnosed are never smokers or people who quit smoking decades ago. It’s the deadliest cancer killer, killing twice as many women as breast cancer and three times as many men as prostate cancer.

As VP of Support and Survivorship for LUNGevity, I support and get to know a lot of lung cancer fighters. I have supported a patient as young as 16 with stage 4 lung cancer. It can happen to anyone with lungs. LCAM is about sharing the facts about the disease and need for funding, informing the public and talking to media,; it’s about offering resources to patients and providers and highlighting advocacy opportunities to change the public’s perception and outcomes for patients.

LCAM It’s not about smoking cessation or tobacco control. Some people mistake LCAM for an opportunity to talk about the hazards of tobacco and promote smoking cessation. That’s something that we should encourage people to do all year long. But that’s not lung cancer awareness. That would be lung cancer prevention, and only then it would pertain to just 10% of smokers.

Join LUNGevity, survivors and advocates across the nation as we unite to shine a spotlight on lung cancer this month.

Here are some ways you can help make a difference this month:

  • Tell someone that November is lung cancer awareness month.
  • Take a picture with a fact sign or your LUNGevity ‘Bandy’ wristband and let’s make it viral.
  • Share the facts about this disease and let people know that if they breathe, they can get lung cancer too.
  • Distribute materials in and around your area to hospitals and support organizations
  • Share our articles, blogs and videos over social media.
  • Let people know about LUNGevity’s comprehensive lung cancer 101 website
  • Let people impacted my lung cancer know about LUNGevity programs and services
  • Participate in Twitter Chats
  • Create a new event or volunteer or participate in events in your area
  • Volunteer to be a buddy for a patient or caregiver
  • Become a volunteer Social Media Ambassador

Let’s raise awareness this November in honor of the 435 people who die of lung cancer each and every day and the 220,000 people in America who are living with it.

 

“Well, You Don’t Look Sick”

A Phrase Commonly Heard by MPN Patients

 

"You look fine to me!"

“You look fine to me!”

(Editor’s Note: This post was written by PV patient, PEN Advisory Board member, and PV Reporter founder, David Wallace. The post was originally published in the PV Reporter.)

Isn’t it amazing how well we look?  In a group gathering of MPN patients you will see very few wheelchairs, walkers, canes, portable oxygen tanks or other medical devices required for daily living.  Behind the facade of  “well-appearing” individuals, we silently suffer from a long list of symptoms including:

  • Fatigue, the #1 complaint and it can be debilitating at times
  • Pain (which can manifest itself in bones, joints, abdomen, back, arms, legs….and the list goes on)
  • Itching (more formally called pruritus in the medical world)
  • Headaches
  • Gout
  • Neuropathy
  • Dyspnea (a fancy medical term for shortness of breath)
  • Constitutional symptoms
  • Night sweats
  • And the list goes on – more symptoms here

I doubt there are many among us who have not heard family or friends utter the familiar phrase“you don’t look sick.”  Not really something we want to hear as it diminishes the “quality of life” struggles we go through living with MPNs.

Living in the “World of the Well” and the “World of the Sick”

MPN puzzle

Human Jigsaw Puzzle

Although we walk proudly in the “world of the well”, many of us live in the“world of the sick” or perhaps bouncing between the two worlds depending on our blood counts, spleen size, level of fibrosis or other intangibles.  Almost like a “dual citizenship”, we stand among the chronically ill.  Recent estimates put Chronic Illness at about 50% in the United States.  Many myeloproliferative neoplasm patients suffer from multiple symptoms turning us into “human jigsaw puzzles” waiting to be put together by doctors who frequently disagree on a standard course of treatment.

The Spoon Theory

Why all the ramblings about symptoms and issues we all know?  The above is a preamble to a post I read recently called the Spoon Theory by Christine Miserandino.  She suffers from Lupus and provides an outstanding narrative on living with a chronic illness – using spoons as an analogy for how much energy she can expend in a given day.

While Lupus in not an MPN, the article stands as a common thread for all of us who live with “invisible chronic illness.”

The upside: live every day to the fullest!

Spotlight on PCORI: Progress in Patient-Centered Outcomes Research

Spotlight

I had the chance to listen to a live webcast of the PCORI Annual Meeting recently and was impressed about what they are doing and their thoughts about where they want to focus their energy in the future.

The Patient Centered Outcomes Research Institute (PCORI) is a non-profit organization that funds comparative clinical effectiveness research focusing on patient-centered outcomes. Their mission statement is:

PCORI helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community.

The Annual Meeting took place over several days and included a number of excellent speakers. You can read

Panel Discussion at the PCORI Annual Meeting

Panel Discussion at the PCORI Annual Meeting

more about the meeting here and listen to the archived websites here.

There were over 200 patients and representatives from patient organizations present at the meeting, and many participated in panel discussions or breakout sessions.

Some takeaways from the webcast were:

  • Patients need to be included in every phase of research, from concept (topic selection) to proposal to design, dissemination and evaluation of results
  • While typical research answers whether A is better than B and is done with the smallest possible trial based on sample size estimation, patient-centered outcomes research needs big trials that address differences that matter to patients, differences in context (socio-economic, for instance) and trials that are multi-centered and international.
  • To get to big trials, researchers need to collaborate instead of compete. PCORI made engagement fundamental; it needs to now make collaboration necessary and essential.
  • Patients are not waiting quietly any more. They are seeking answers. To illustrate this, a speaker quoted one of her patients as saying, “You say there is a 3% chance of this happening, but if it happens to me, it’s 100%”
  • If a patient’s treatment is not aligned with their personal life, then it is not meaningful.
  • Dissemination is so very critical to this research. The results need to be disseminated to the right people quickly.
  • After dissemination of results, guidelines and regulatory change is needed to effect clinical change.
  • Changing practice takes time. Patients have to be disruptive to get change initiated. Tara Montgomery, Senior Director of Health Impact at Consumer Reports put up an excellent slide showing 5 questions that patients should ask their doctor about screenings or treatments:
  1. Do I really need this test?
  2. What are the risks involved?
  3. Are there simpler, safer options?
  4. What happens if I don’t do anything?
  5. How much will this cost and will my insurance pay?

Sharon Levine, MD, Pediatrician at Permanente Medical Group of Northern California and member of the PCORI Board of Governors, spoke of 3 gaps that need to be closed in integrating decision support into the workplace:

  1. Knowledge gap
  2. Knowing gap – dissemination of knowledge
  3. Knowing/doing gap – need to understand how we structure incentive programs and need to measure what people are doing and use these measures for performance improvement

Dr. Levine also stated that there is a definite need to better explain probability and uncertainty to patients.

The thread running through this meeting was that change is difficult, and in order to effect change in clinical practice, there is a great need for patients to be involved in every stage of research and for the research to be disseminated effectively so that it can be acted upon in a timely manner.