This blog post is part of a series about our PCORI Engagement Award - we will post updates on our discussions every few months, so you can follow along!  Last year, we shared that GP received an Engagement Award from PCORI (Patient-Centered Outcomes Research Institute) to “engage in patient-centered outcomes research and comparative effectiveness research (PCOR/CER) to assess peer support as a crucial intervention for young adults with chronic conditions.”  Want to learn more about what this means?? Interested in the work we’re doing? Read on! :)  What are “patient-centered outc ..read more

In mid-March, two of our Health Policy Scholar alumni, Grace Shults and Tai Chou-Kudu, had the opportunity to meet Ms. Stacy Sanders, the first Chief Competition Officer at the Health and Human Services. At Generation Patient, we believe competition in healthcare—whether within the pharmaceutical, insurance, hospital, or pharmaceutical benefit manager industries—is crucial to promoting patient options and lowering prices. We also believe that lived experience and patient voices must lead conversations about healthcare transformation in the United States. Please read this reflection from Tai be ..read more

Generation Patient applauds Senator Durbin (D-IL) and Senator Braun (R-IN) for their joint letter to FDA Commissioner Dr. Robert Califf to inquire about the oversight of pharmaceutical advertisements on social media.  In January 2024, Generation Patient executive director Sneha Dave and director of operations Sydney Reed, with Dartmouth professor Dr. Steven Woloshin, published an opinion piece in STAT News. Soon after, Senator Durbin's office released this letter requesting several questions and highlighting concerns, some of which were based on areas of concern we have identified, includ ..read more

At Generation Patient, we aim to strengthen the advocacy skills of our fellow young adult patients while also ensuring that our perspectives are represented within health policy. We do this through our three key policy areas and the Health Policy Scholars program. Our Health Policy Scholars Program combines peer support with educational and advocacy opportunities for young adults living with chronic and rare medical conditions. Our scholars bring a vital viewpoint to the health policy arena, united by their lived experiences and a keen interest in actively engaging with health policy matters ..read more

To Members of the Senate Judiciary Committee: As young adults living with chronic medical conditions, we write today to inform you why we oppose S. 2140 - the Patent Eligibility Restoration Act, which your committee will hear on Tuesday, January 23. We are a patient advocacy group that has refused all funding from the private healthcare industry, ensuring our voices represent our experiences as young adult patients. Central to our belief, the patent system should incentivize innovation and competition and allow patients timely access to biosimilars and generics. We oppose the Patent Eligibilit ..read more

Check it out! We created the Prescription Drug Affordability Board (PDAB) Primer for patients and patient groups to advocate effectively for lower drug prices at the state level. There is a lot of misinformation about PDABs, and we feel it is essential to address how critical they will be to help our community of young adult patients afford therapeutics! Do you have any other questions? Feel free to email us at admin@generationpatient.org; we will do our best to address them!  ..read more

We write today as young adults living with chronic medical conditions to urge Congress to act on the need for meaningful pharmaceutical patent reform. While the Inflation Reduction Act marked a historic milestone, it predominantly benefits older patients, and it remains necessary to make significant reforms to the patent system that would make prescription drugs more affordable and accessible to patients across all age groups and demographics. We are committed to ensuring that the voices of young adult patients are included in this critical effort to reform the patent system. Our young adult p ..read more

Thank you for the opportunity to comment on the work of the Colorado Prescription Drug Affordability Board (PDAB) as it begins to conduct affordability reviews. Generation Patient is a nonprofit organization created and led by young adults with chronic and rare conditions. We are proudly independent of all private healthcare industry funding, including from the pharmaceutical, insurance, and hospital industries. Our organization focuses on peer support, advocacy, and access to educational information and resources as fundamental pathways to empowerment. According to the Georgetown University ..read more

Generation Patient is pleased to announce our participation in an amicus brief advocating for patients living with narcolepsy, whose access to innovative treatments is at risk due to pharmaceutical monopolies. Our organization is dedicated to championing patients' rights and promoting equitable access to cutting-edge therapies. The amicus brief supports the FDA's decision to approve Lumryz, a once-a-night medication for narcolepsy that offers clear clinical benefits, as a competitor to Jazz Pharmaceuticals' twice-nightly treatment. The FDA approved both drugs under the Orphan Drug Act, which ..read more

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, arth ..read more