Celebrating America's Patient Advocates: Advancing the Next Era of Innovation and Access
Milken InstituteDavid Trulio, Kristen Schneemann, Dr. Francis Collins, Brian Wallach, Sandra Abravea, Margaret Anderson, Debbie, Erin, Ellen, Peter, Aaron, Ramy Pierini, Eric Racine, Dr. Wayne Frederick, Annie Kennedy, Adrienne Shapiro, Sean Martin, Leah Howard, Jean Wright, Dominica Kovacs, Roy Swartz, Dr. Uche Blackstock, Kristen Dahlgren, Darius Tahir, Donna Cryer, Angie Davis, Natasha Fitter, Randy Ruta, Bill Lawrence, Michael Hund, Dr. Roland Illing, Emily Taylor, Sarah, Isaiah, Christine
- Discovery Lives in Us anticipates launching a patient story submission platform within one month, with potential features including wider distribution and inclusion on Netflix.
- The "Cures for All" coalition plans to expand to include organizations representing Alzheimer's, Parkinson's, Ataxia, Huntington's, and Myasthenia Gravis to apply the ALS playbook for faster policy changes, approval timelines, and improved clinical trial success rates.
- The Michael J. Fox Foundation expects to fund $700 million in research grants this year and has raised $1.75 billion toward a $2.5 billion campaign, while planning to allocate $90 million to $100 million specifically to de-risk biotech development for Parkinson's disease.
- Legislation for the Act for ALS is expected to pass the House and Senate following a Senate passage of $500 million in funding, potentially providing access to treatments for nearly 1,000 individuals.
- Patient advocacy groups project a potential doubling of the NIH budget within five years contingent on a coordinated bipartisan campaign under a future pro-science administration, alongside expectations for direct NIH earmarked funding to control rare disease research timelines.
- Friends of Cancer Research intends to focus on biomarker validation and ctDNA data sharing to improve early detection and trial success rates, while the "Cures for All" coalition aims to help the FDA establish a legislative pathway for breakthrough therapies and reorganize the oncology office for holistic diagnostics and therapeutics work.
- Breakthrough T1D expects significant effort will be required to educate the medical community, including endocrinologists, on the new dosing protocols for an upcoming Sanofi-made disease-modifying therapy.
- The "Declaration for Patient-Driven Innovation, Access, and Trust" is expected to influence public dialogue for the next five to ten years, structured around patient needs, the role of advocates, industry changes, and progress metrics, with content derived from interactive feedback.
- The Radiant platform is expected to be deployed nationwide to allow parents independent management of patient data, while AWS anticipates using grants to help non-profits scale technology and biological foundation models to accelerate drug discovery from years to weeks.
- AI and machine learning are expected to be integrated into medical school curricula to prepare physicians for data-driven practice, with technology enabling closed-loop systems that provide physicians access to 90 days of patient glucose data prior to appointments.
- The next administration is anticipated to need to address science under attack and restore pro-science policies within approximately two years, while the current election cycle is expected to see a significant increase in AI-generated content requiring advocacy groups to develop tools for verifying information.