As young adults with chronic conditions, we are pleading for Congress to recognize the urgent need for meaningful patent reform. While the Inflation Reduction Act marked a historic milestone, predominantly benefiting older patients, it is still necessary to establish robust patent reform that would vastly improve the lives of patients across all age groups and demographics. We are committed to ensuring that the voices of our fellow young adult patients are not overlooked in this crucial reform effort.
Our young adult patient population is unique. We are affected by Crohn’s disease, lupus, arthritis, Ehlers-Danlos syndromes, frequent strokes, and numerous other health conditions. Many of these conditions are chronic, meaning we will likely live with them throughout the majority of our lives, the financial impact of which could greatly influence the trajectory of our futures. Furthermore, as young adults, we are going through times of transition, often marked by immense financial instability to begin with. We are pursuing our education and our independence, developing our identities, and navigating complex health conditions, all while the devastating potential loss of insurance looms over us. The physical, emotional, social, and financial toll of such severe, complex conditions is clear, yet the lifesaving medicines we need are still unaffordable.
Patent reform should include pressure on pay-for-delay tactics (offering patent settlements to delay competition), patent thickets (companies having to navigate a forest of patents often protecting on meaningless enhancements), and product hopping (manufacturer switches to a follow-on product). We support the Congress’s efforts to pass legislation addressing these abusive practices. There is urgency and we expect patient-centered patent policies to pass through the Senate by the end of the year.
Congress has the key to set a precedent for urgent and meaningful patent reform, and we hope agencies will follow suit. As an organization, we have worked to submit comments and will continue to put public pressure on agencies, such as the National Institute of Health, Food and Drug Administration, United States Patent and Trademark Office, and Federal Trade Commission, to curb patent abuse.
Reforming the patent system is crucial for advancing therapeutic options. As young patients, we are cycling through treatment options quickly. For many conditions, the younger a person is diagnosed, the more severe the disease can be. And we will live with these conditions for a lifetime. It is often scary and frustrating for us to think about our future. However, patent reform has the enormous potential to promote novel inventions.
It's important to acknowledge that many patient groups have been relatively quiet on the issue of patent reform. This reticence is partly due to the complexities surrounding the substantial funding that several major patient groups receive from the pharmaceutical industry, which has, in some cases, hindered their active engagement in advocating for patent reform. These conflicts of interest show the power of Big Pharma in impacting the issues nonprofits choose to advocate.
We feel inspired and have great hope that you will prioritize meaningful patent reform for patients, not just companies that are profiting off the conditions we will endure for a lifetime. We look forward to working together this Congress to ensure young adult patient voices are represented within all policy decisions.