Patients Rising

Patients Rising
Name	Patients Rising
Founded	2010
Founders	Adam Fein, Charles G. Hill
Headquarters	United States
Focus	Patient advocacy, access to medicines

Patients Rising is an American patient advocacy organization focused on reducing barriers to access for prescription medicines and medical devices. The group engages in public education, lobbying, and grassroots organizing to influence legislation, regulation, and corporate practices affecting treatment affordability and innovation. It operates in the context of U.S. health policy debates involving pharmaceutical pricing, insurance coverage, and regulatory approval.

History

Patients Rising was established in 2010 by Adam Fein and Charles G. Hill amid high-profile debates over Affordable Care Act implementation, biologic drugs development, and rising prescription drug pricing controversies. Early activity coincided with landmark events such as the 2010 Patient Protection and Affordable Care Act passage, debates around Medicare Part D, and concern following price increases by firms like Turing Pharmaceuticals and executives such as Martin Shkreli. The organization expanded its presence during the 2010s as issues like approval of biosimilars, disputes over drug patents, and litigation such as the Wyeth v. Levine line of cases shaped public discussion. Patients Rising has engaged with stakeholders including patient groups for rare diseases linked to companies like Vertex Pharmaceuticals, advocacy coalitions such as PhRMA-opposed campaigns, and policy forums involving the Food and Drug Administration and Centers for Medicare & Medicaid Services.

Mission and Activities

Patients Rising states its mission to promote patient access to therapies and to counteract barriers created by pricing, reimbursement, and regulation. It conducts public education campaigns aimed at consumers, healthcare professionals, and policymakers in venues related to the U.S. Congress, state legislatures such as the California State Legislature, and regulatory bodies like the FDA. Activities include media outreach on platforms like major newspapers covering the New York Times beat for health policy, participation in hearings before committees such as the Senate Committee on Finance, and collaboration with coalitions including disease-specific groups tied to organizations like the American Cancer Society and National Multiple Sclerosis Society. The group also produces testimonial content featuring patients affected by decisions from companies such as Gilead Sciences and insurers like UnitedHealth Group.

Advocacy and Policy Positions

Patients Rising advocates policies to improve affordability and access, often opposing measures perceived as reducing incentives for pharmaceutical innovation. The organization has taken positions on proposals such as price negotiation by Medicare, patent reform debated in contexts like the Patent Trial and Appeal Board, and importation initiatives tied to International trade discussions involving countries such as Canada. It has supported pathways for accelerated approval overseen by the FDA and promoted competition through regulatory frameworks for biosimilars championed in dialogues referencing Biologics Price Competition and Innovation Act. The group has participated in comment letters and submitted testimony to bodies including the Office of the Inspector General (HHS) and the U.S. Department of Health and Human Services regarding issues like formulary design used by payers such as Express Scripts and CVS Health.

Programs and Campaigns

Programs and campaigns run by Patients Rising have included outreach geared to specific constituencies affected by decisions from manufacturers like Novartis and Amgen, as well as campaigns timed to legislative cycles for bodies such as the House Committee on Ways and Means. Campaign themes have ranged from calls for greater transparency in pricing mechanisms referenced in debates about Value-based pricing to targeted appeals during regulatory reviews at the FDA Advisory Committee level. Past initiatives have leveraged partnerships with patient networks including those related to HIV/AIDS advocacy and rare disease communities involved with organizations like National Organization for Rare Disorders. The group has deployed digital campaigns, op-eds in outlets covering the Washington Post sphere, and grassroots mobilization aimed at state regulators and insurance commissioners such as those in Texas and Florida.

Funding and Governance

Patients Rising is structured as a nonprofit advocacy entity with a board and executive leadership including founders connected to public affairs networks and health policy consultancies. Its funding has included contributions from health sector companies, philanthropic foundations, and independent donors; corporate supporters have encompassed firms across the pharmaceutical and biotech industries such as Pfizer, Johnson & Johnson, and smaller biotech startups. Governance disclosures and bookkeeping intersect with rules enforced by agencies like the Internal Revenue Service under tax-exempt regulations. The organization has reported collaborations and sponsorships with trade groups such as PhRMA and with policy research entities similar to Kaiser Family Foundation-style think tanks.

Criticism and Controversies

Patients Rising has faced criticism regarding perceived industry influence and alignment with corporate interests, drawing scrutiny from watchdogs like Public Citizen and journalists at outlets including ProPublica. Critics argue its positions on issues such as opposing Medicare negotiation mirror industry talking points advanced by trade groups like PhRMA and that funding from firms such as GSK or Eli Lilly and Company could bias advocacy. Controversies have included disputes over transparency in reporting donors, framed in investigative coverage similar to analysis by The New Yorker or by policy commentators tied to the Brookings Institution and Heritage Foundation. The organization has responded by asserting patient-centered motivations while critics continue to press for clearer accounting and separation between corporate sponsorship and agenda-setting.

Category:Patient advocacy