Why Walter White of ‘Breaking Bad’ Is Relevant to the CF Community
No one should be unable to afford lifesaving medications
For years, bound by an undying loyalty to New Jersey, I never watched the TV show “Breaking Bad” because nothing would ever top “The Sopranos.”
If you’re a TV connoisseur like me, you’ll know that many believe the top four television shows ever made are the two aforementioned ones, plus “The Wire” and “Game of Thrones.” Yet I refused to give in. Then, a few months ago, shortly after I was discharged from the hospital for pneumonia and an infection, my wife convinced me to start watching “Breaking Bad,” and I realized everyone was right.
The show is absolutely phenomenal and quite possibly the best I’ve ever watched.
“Breaking Bad” is uniquely American in that it could only take place in the United States. Sure, I could write essays on other themes in the series, such as the war on drugs (not the band) and the justice system. But the show’s main character, Walter White, portrayed by Bryan Cranston, doesn’t get to explore those topics without first touching on the U.S. healthcare system.
White, a high school chemistry teacher, only starts making crystal meth because he’s been diagnosed with terminal cancer and doesn’t have a way to pay for treatments and take care of his family, including his teenage son with cerebral palsy. White lives in fear that if he doesn’t go to extreme lengths, his family will be forced to live with massive debt once he dies. Eventually, he spirals into mayhem, and that’s when the show picks up about 10 gears. However, it wouldn’t exist if White and his family had adequate healthcare.
I want to be very open with you about the internal struggle I have with writing this. On the one hand, I don’t often like to publicly opine on serious topics that bend toward the political spectrum. Yes, I have a degree in political science, but I do my best to avoid speaking on issues that I haven’t studied or lack a personal connection to. To a degree, I feel like it’s irresponsible of me.
On the other hand, changes to copay assistance programs do affect people in my cystic fibrosis (CF) community. If one of us struggles to obtain lifesaving medicine, then it becomes a possibility we all may have to face. If we are priced out by pharmacies, then these medications won’t be available to any of us.
‘Serious consequences’
For those who are unaware, Vertex Pharmaceuticals recently made changes to the financial assistance it offers to patients. As the Cystic Fibrosis Foundation (CFF) notes, “Those with an accumulator or maximizer as part of their plan will receive copay assistance of only $3,500 per monthly fill (down from $8,950).” Vertex also capped yearly copay assistance at $20,000.
This has caused an uproar in the CF community. Many are stressed and anxious about whether they’ll be able to afford modulator therapies, including Trikafta (elexacaftor, tezacaftor, and ivacaftor), Symdeko (tezacaftor and ivacaftor), Orkambi (lumacaftor and ivacaftor), and Kalydeco (ivacaftor).
The CFF has spoken out against these changes, warning of the “serious consequences” of the new policy, which could hurt many patients and families who rely on medications to live normal lives. The foundation urged Vertex to roll back its decision.
I don’t think anyone living with cystic fibrosis or parenting a child with CF will go full Walter White and turn to drug dealing as a way to pay for treatments and keep their families from going into debt. But the fact that this is even a possibility 10 years after the show concluded indicates that we as a society need to do better in treating our own.
Bionews, the parent company of CF News Today, has granted me a platform to speak on issues affecting the cystic fibrosis community. I believe I’d be letting a lot of people down and doing myself a disservice if I didn’t speak out against this injustice. No one should go into poverty trying to pay for lifesaving medicine.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Comments
Anthony Palmiero
Great job as usual. Lets go GIANTS. Love Tony
William Ryan
Let's go Giants! Thanks Tony!
TIMOTHY J BRANSFORD
This is what I believe is the evolution of our revolultionary CFTR modulator therapies. Correct me if I'm wrong:
Clearly, venture philanthropy is the reason we have the CFTR modulators. In 2000, the CF Foundation invested $40 million with Aurora Biosciences (now Vertex) to discover compounds that might correct core genetic defect in people with CF. This was uncharted territory and these "for profit" pharmaceutical companies were not willing to spend the money on such high risk research. With CF foundation money to mitigate the risk they moved forward. In 2012, the FDA approved Vertex's application for ivacaftor (Kalydeco).
Orkambi, Symdeko and Trikafta all emerged from the breakthrough made by Kalydeco. The risk for development of these therapies was much less than the risk associated with the revolutionary Kalydeco. You would think that lower risk should result in lower price...
I will let you tell me why we allow these pharmaceutical companies to price gouge for therepies that were only discovered due to the financial assistance provided by donors and foundations, and government grants. If you doubt the price gouging term just look at the stock value of Vertex after each breakthrough drug was approved by the FDA. These huge stock increases were driven largely by the massive profits generated by Vertex. And these profits were the direct result of the successes of each new drug.
William Ryan
Timothy,
As we both unfortunately know, pharmaceuticals will do anything to make a small profit. Unfortunately it's to the detriment to those who do not stand to gain any money. One can only dream of the day that changes.
Helen Palmiero
Will, you really hit home with me with this article. Changes to co-pays - especially in the new year - are so hard to manage. My husband and I are blessed to receive meds we can (sort of) afford (sometimes). It shouldn't be this difficult with Big Pharma seemingly "helping" the people it supposedly" serves". I could go on and on. So, Will, you've written another excellent, thought-provoking article. Keep exercising our minds, Will. Maybe a solution will be reached someday. Love, Helen
Kathy
Thank you for talking about this! My daughter has CF and we are so upset and very worried on how we are going to have to try and pay for this. This med has been a HUGE life changer for her. I'm praying that they will reverse this decision or someone else will step up. My daughters life depends on this medication as do others.
William Ryan
I hope the best for you and your daughter! It's a real struggle out there and hopefully we, as a community, can alleviate this issue.