The Patient Perspective: Government price-setting harms patients

Unfortunately, policymakers are again looking for bumper-sticker answers to the health care affordability challenges many Americans face, ignoring real commonsense solutions in exchange for flawed government “negotiation” schemes. The current misguided drug pricing plan included in the reconciliation package mandates the government set prices for medicines – a plan that will completely upend our competitive ecosystem in the United States and threaten access to new medicines.

The plan guts the very incentives necessary to encourage investment in research and development, perpetuates existing problems with our current health care system and fails to address the real challenges of inadequate insurance coverage causing patients to struggle to afford their medicines.

I recently had the chance to hear from Stephanie, an arthritis patient and mother from Montana, and Daniel, a young chef who battled COVID-19 and serves as a caregiver to his father with Graham-Stout disease from Arizona. As patients and caretakers, these individuals have an acute understanding of the very real consequences government price setting would have for patients.

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Andrew: America is home to the greatest research and development (R&D) ecosystem in the world helping to deliver new treatments and cures to patients. Why is it so critical the United States continues to lead the world in this lifesaving R&D?

Daniel: First and most importantly, my father suffers from a rare and painful condition that causes his bones to deteriorate. My family and I desperately want to see a cure, and I know America’s biopharmaceutical companies help provide our best shot. Second, I work in the food services industry as a chef and need to stay healthy to do my job. I’ve already had to miss numerous weeks of work due to catching COVID-19 on multiple occasions. With new variants seeming to pop up every few months, I could not think of a more important time for our country to prioritize medical research.

Stephanie: As someone with rheumatoid arthritis, it is a constant battle to manage my joint pain, swelling and tenderness. While I am fortunate to have access to prescription medications that help, I am always hopeful for new options that could improve my quality of life even more. I also know that one new medication isn’t going to help all 1.3 million of my fellow arthritis patients here in the United States, so we need robust research that leads to multiple new treatment options.

Andrew: If Congress moves forward with government price-setting proposals and we see less investment in lifesaving biopharmaceutical R&D, we will see a reduction in the number of new cures and treatment options available to American patients. As an American and a patient/caregiver, how does this make you feel?

Daniel: I don’t understand why politicians would want to move forward with any policies that would decrease the number of new cures and treatments available that could help people. Even worse, what if one of the treatments not discovered because of price setting is one that would help my dad? Honestly, it frustrates me.

Stephanie: It’s discouraging. COVID-19 vaccines are a clear example of what can happen when our government supports scientists and researchers and empowers them to do what they do best, which is to innovate. To me, the evidence is clear: we need policies that encourage the creation of new treatments, not policies that disincentivize continued investment.

Andrew: Many believe rather than proceeding with price-setting proposals that jeopardize patient access to lifesaving treatments, Congress should focus on bipartisan solutions that would meaningfully address costs for patients like capping out-of-pocket costs and making sure insurance coverage actually works for patients when they need it most. Do you agree?

Daniel: I couldn't agree more. At the end of the day, Congress needs to bring down costs for patients, but they need to do so in a way that doesn’t leave patients like my dad behind who desperately need help. To me, the most commonsense way to accomplish this is by making sure that insurance companies are appropriately covering costs and capping what our most vulnerable patients are responsible for covering out of their own pocket.

Stephanie: For years now we have seen insurance premiums and deductibles increase right alongside patient out-of-pocket spending. It just doesn’t make sense that Americans pay more every year for coverage yet consistently get less. For the amount of money people spend each month, the least we can do is make sure insurance acts like insurance when we need it most.

Andrew: If you could deliver one message to politicians in Congress who are considering moving forward with government price setting, what would you say?

Daniel: Politicians need to think of families and patients like my dad who are counting on new drug discovery and the hope for future cures. Find a better way to drive down costs that doesn’t harm lifesaving innovation. We all know that new drug discovery saves lives, and I would ask them to keep that in mind.

Stephanie: I would remind them that America is the most innovative country in the world for a reason. I would make sure they know that the only way we are going to discover new treatments and save lives is by supporting science and those who have the ability to create new medications.

Learn more about why government price setting is bad policy and better ways Congress could help patients access and afford their medicines.