Comment for the Record Submitted to Senate Committee Hearing

Take a look at our comment for the record submitted to the Senate committee hearing on “Ensuring Affordable & Accessible Medications: Examining Competition in the Prescription Drug Market!”

Dear Chair Durbin, Ranking Member Graham, and Senate Judiciary Members:

We write to you as a generation of patients living with chronic and rare conditions such as Crohn’s disease, lupus, arthritis, and many others. For too long, young adult patients have been left out of conversations to address the high costs of medications that we rely on not only to survive but to thrive as we enter adulthood. Many of us know that a cure is not attainable in our lifetime, and we will rely on incredibly high-cost medications for our entire lives, meaning that innovation and fair prices are crucial to reaching our potential. As a young adult patient-led organization, we believe strongly that reforming the patent system to promote competition, incentivize innovation, and create more ways for the public to challenge patents is an opportune way for our community to have better futures. 

We implore you to personally consider the profound impact that reforming the patent system could have on young adult patients like us. We are finding work for the first time, navigating insurance changes, the possibility of pursuing further higher education, and financial instability, with the added stress of affording our prescription medicines. 

We see clear opportunities to address patent abuses that are keeping the price of critical prescription drugs high, including pay-for-delay tactics, patent thickets, and product hopping. We also are thrilled to see steps in the right direction, such as the collaboration between the United States Patent and Trademark Office and the Food and Drug Administration. These reforms would benefit patients and foster a more competitive and innovative pharmaceutical industry. 

Competition will lower our drug prices: Our community members are on high-cost medications such as Nurtec ODT, Stelara, and Eliquis - all of which have extremely high prices and tremendous patent abuse. Many of us are also living with highly complex conditions requiring multiple prescription medicines. And the price relief we expect from competition through biosimilars and generics being introduced into the market has been delayed for far too long. Access to prescription medications is a basic human need. According to the Georgetown University McCourt School of Public Policy, 53% of people ages 18-34 use prescription drugs. Moreover, 21% of people ages 18-49 years old say they have difficulty affording their medication. The share is likely to be even higher for younger adults, given that the subgroup 18-24 has one of the highest poverty rates. This is a moment to ensure our community is well-represented as you consider the impact of high drug prices on the current and next generation of patients.

Innovation is particularly crucial for young adult patients: As young adult patients who will rely on therapeutics throughout our lifetime, we hope for new and better inventions that can benefit our community. Many of us cycle through therapeutics frequently, meaning that what is in the pipeline could be life-saving and life-changing. For patients in our community with rare conditions without prescription medicines left for us to try, we are navigating many changes in treatment options. Promoting true innovation could give many people the tools to increase their functionality and ease the pains of living with a chronic illness. 

Increase public participation in the patent system: Patients and public interest groups should have clearer opportunities to engage in the patent system. Instead of scaling back opportunities to challenge invalid patents, we need to create more opportunities. While we spoke at the USPTO-FDA listening session in January 2023 and have engaged in other ways, we look forward to seeing more meaningful opportunities for patients to be included. 

Indeed, we are grateful for the research and development of public-private partnerships that have contributed to bringing life-saving therapeutics to market. Over 85% of young people with chronic conditions are now surviving into adulthood, many of whom live with complex, lifelong conditions. However, pharmaceutical companies exploiting loopholes in the patent system make these life-saving drugs unaffordable and inaccessible. As more young people are being diagnosed with chronic conditions, it is crucial that we urgently activate policies that can reform the patent system for now and in years to come. Thank you for your time and for including our perspectives on this critical and timely issue. 

Sincerely, 

Generation Patient 

admin@generationpatient.org