Kidney Month is my Kidney-versary: Why Innovation Matters
By: Priscilla VanderVeer
This is the first in a series of posts recognizing March as National Kidney Month.
My kidneys started failing when I was just five years old. Decades later, ongoing innovation has kept me alive.
At age six, I started dialysis and had my first kidney transplant – from my mom – a year later. Fast forward to my freshman year of college, when that kidney failed because of chronic rejection. I spent the next four years navigating dialysis, the transplant list, and more complications than I can count, all while trying to finish college, work, and live independently. Thanks to my donor family’s selfless act, I received a second transplant 26 years ago this week, on March 13, 2000.
This 26-year anniversary is thanks to the treatments that innovators spent decades developing and the system we have in place to reward those efforts.
In 1983, the immunosuppressant drugs used to prevent my body from rejecting my mom’s transplanted kidney left a lot to be desired. They weren’t great at preventing chronic rejection, and their side effects are with me to this day (“Hello, daily high doses of prednisone? Yeah, my bones and joints called. They’d like a word.”).
By the time I had my second transplant in the year 2000, there were better, more effective immunosuppressants on the market. While I still take a low dose of prednisone, the new anti-rejection meds allowed for much better efficacy without side effects such as bone density loss, excess hair growth where you don’t want it, swelling, and mood swings. Those are all things a girl in her 20s really would rather not have to manage.
That new drug was expensive at first (although nowhere near as expensive as thrice-weekly hemodialysis treatments). Then once its period of market exclusivity ended, it quickly became generic. The drug life cycle worked exactly as it should: innovation was rewarded, after which the patent expired and generic competition drove the price down.
And that’s just ONE of the prescription medicines I’m on to manage my disease. Of the 10+ medicines I take, ALL are generic except one (and unsurprisingly, I pay for that one out of my own pocket because insurance doesn’t cover it, but that’s a post for another day).
All of those now generic medicines came to market because the developers had the ability to get market exclusivity for a certain number of years first. That generated the returns necessary to incentivize drug development. This product lifecycle encourages investments into the next novel therapy, while also providing society with new, inexpensive generics in perpetuity.
Unfortunately, existing laws and proposed policies that allow the government to set prices are undermining this progress:
Under the Inflation Reduction Act, Medicare gets to set prices for small molecule treatments (like mine) just nine years after FDA approval. This truncated period to earn a return makes small molecules less favorable investments than biologics, and we’re already seeing the impact as R&D into non-biologics is contracting. Congress can and should fix this mistake quickly, and we’ve got ideas on how to do it without it costing more money.
And any policy that sets U.S. prices based on how much other countries undervalue innovation, including “Most Favored Nation” proposals, should be a non-starter. MFN would do even more to end progress and give patients like me even less hope for better treatments and cures in the future.
This transplant will not last forever. I operate at about a quarter function in this one kidney today. I will need better and more effective medicines in the future. Other patients need them right now.
This National Kidney Month, let’s celebrate progress and push for policies that ensure treatment advances are affordable and accessible. Learn more at https://www.nopatientleftbehind.org/protect-innovation.