The Trump administration's latest round of voluntary drug-pricing deals has put Most Favored Nation pricing back in the headlines. I understand the appeal. I have spent my life depending on medicines to stay alive, and I know what it feels like when care becomes unaffordable.
But patients like me also know that a lower price means little if the medicine is delayed, denied, or never developed.
My kidneys failed when I was six. At seven, I received my first transplant, donated by my mom. It allowed me to live a normal life through high school. But over time, my body began rejecting the transplanted kidney, and it failed during my first year of college.
I went back on dialysis three times a week, four to five hours at a time, for four years. I studied for finals, worked to help pay the bills, and spent hours attached to a dialysis machine.
Then, in March 2000, I received a second kidney from someone who had died and whose family chose to donate their organs. This time, medicine had changed.
A transplant only works if doctors can keep the recipient's immune system from attacking the organ. After my first transplant, the medicines that did that came with significant side effects and ultimately weren't enough to save the kidney from chronic rejection. By 2000, doctors had Prograf, a newer medicine that gave transplant patients a better way to prevent rejection while relying less heavily on steroids.
For me, that was a huge advance. I could take much less prednisone, a powerful steroid with serious side effects. That meant less bone loss, fewer mood swings, and less of the uncontrolled weight gain than I had experienced before.
But even the best anti-rejection medicines cannot eliminate the risk entirely. Soon after my second transplant, my body began rejecting the new kidney. Doctors offered me a treatment that at the time was only recently being used in kidney transplantation: a form of plasma exchange designed to remove the antibodies attacking the organ. The other option was extremely high doses of steroids, with significant risks and little chance of success.
I chose the experimental approach.
Twenty-six years later, I still have that kidney.
Prograf was expensive at first. Today, it is generic and costs a fraction of what it once did. That is something that gets lost in our drug-pricing debate: Yesterday's expensive breakthrough becomes tomorrow's inexpensive generic.
I see that cycle in my own medicine cabinet. Of the roughly dozen medicines I take, only one is not generic.
That is why I worry about the push to codify Most Favored Nation pricing, tying U.S. drug prices to those in other wealthy countries. If voluntary agreements lower what patients pay, that is a good thing. But permanently importing prices set by foreign health systems is different.
It would not fix coverage denials, insurance delays, or high out-of-pocket costs. Nor would it guarantee that lower prices reach patients at the pharmacy counter.
There is another trade-off. American patients get new medicines faster than patients anywhere else in the world. That is not an accident. Many countries achieve lower prices in part by limiting what they will pay for new medicines, which can mean restricted coverage and long waits before patients can get them.
Congress should think carefully before importing those countries' prices — and the access problems that come with them.
The longer-term risk matters even more to me. Developing a medicine is a bet made years before anyone knows whether it will work. Reduce the expected return enough, and some of those bets will never be made.
I know what that possibility means because I have lived the opposite story. The medicine available for my second transplant was better than what existed for my first. Another treatment that helped save my kidney was still experimental at the time; today, it is commonly used in transplant medicine.
We do not have to choose between affordability and innovation. Congress should focus on making medicines more affordable for patients without undermining the incentives that produce the next generation of treatments. And wealthy countries that benefit from medical innovation should bear more of the cost of sustaining it.
I will need another kidney transplant someday. When that day comes, I want the best medicines science can produce — not simply the “good enough for now” medicines we have today.
Priscilla VanderVeer is executive director of No Patient Left Behind, a nonprofit that advocates for policies that protect biomedical innovation and improve patient access to affordable prescription medicines.
