Patient community concerns on CA proposal to increase minimum state rebate percentage for critical medications
Senate Budget and Fiscal Review Committee
Subcommittee 3 on Health and Human Services
1020 N Street, Room 502
Sacramento, CA 95814
Honorable Dawn Addis
Assembly Budget Committee
Subcommittee 1 on Health
1021 O Street, Suite 8230
Sacramento, CA 95814
Dear Chair Dr. Weber-Pierson, Chair Addis, and Members of the Committees,
On behalf of the HIV+Hepatitis Policy Institute and the undersigned eleven organizations committed to health equity and access to care, we write to express our deep concern regarding the Department of Health Care Services (DHCS) trailer bill proposal to increase the minimum state rebate percentage for HIV and cancer drugs. While we understand California’s fiscal challenges, we urge the Legislature to reject this proposal, which would jeopardize access to life-saving medications and disproportionately impact low- income Californians living with HIV, cancer, and other serious health conditions.
People living with HIV and cancer rely on timely and uninterrupted access to medications to survive and thrive. California’s Medi-Cal program covers over 15 million residents, including more than 70% of Californians living with HIV. For these individuals, access to antiretroviral therapies is not optional—it is a daily necessity that maintains health, prevents transmission, and saves lives.
Increasing the minimum rebate percentage from 10% to 20%, on top of federal rebates which are uncapped, risks disincentivizing manufacturers from participating in Medi-Cal’s drug rebate agreements, leading to potential restrictions, reduced access, or delays in obtaining essential medications. It also comes at a time when drug manufacturers are being hit with potential tariffs, federal negotiated prices and greater demands for compassionate care programs. At the same time, they are investing in new cures and lifesaving treatments.
HIV and oncology medications are being singled out as the only two drug classes that would be subject to this increased minimum rebate percentage under Medi-Cal. This proposal would double current rebates and unfairly targets treatments for people with the most serious health conditions, effectively shifting the burden onto those who can least afford disruptions in care.
In California, more than 138,000 people are living with HIV, and over 4,000 new cases are diagnosed annually. The epidemic continues to disproportionately impact communities of color:
- 51% of new HIV diagnoses in California are among Latinos.
- Nearly 20% are among Black Californians, who make up just 5% of the state population.
- Transgender individuals and young LGBTQ+ Californians also face rising rates and face systemic barriers to care.
Nationally, over 1.2 million people are living with HIV in the United States, with approximately 35,000 new diagnoses each year. Advances in treatment mean that people with HIV can live long, healthy lives but only with consistent access to medication and care.
At a time when California should be expanding access to HIV treatments, particularly in underserved and disproportionately impacted communities, this proposal would move us backwards. It would do so in the context of growing national uncertainty, as recent federal actions to suspend or restructure key HIV programs and contracts have already disrupted long-standing support systems. Introducing additional state-level uncertainty could further destabilize this fragile infrastructure and threaten the progress California has worked hard to achieve.
We recognize the importance of fiscal responsibility and the need to manage state costs, but patients must not pay the price. Drug rebate programs should be used to improve care and affordability, not fill budget gaps.
We respectfully urge the Legislature to reject the proposal to increase the minimum state rebate percentage for HIV and cancer drugs. Californians deserve a health system where equity is not just an aspiration, but a lived reality. Achieving that requires safeguarding access to life-saving treatments, especially for those who are most vulnerable and already facing significant barriers to care. Should you have any questions or comments, please contact Carl Schmid, Executive Director of the HIV+Hepatitis Policy Institute, at cschmid@hivhep.org.
Sincerely,
Carl Schmid
Executive Director
HIV+Hepatitis Policy Institute
Aging and HIV
ADAP Advocacy
Biomarker Collaborative
California Chronic Care Coalition
Exon 20 Group
ICAN, International Cancer Advocacy Network
Liver Coalition of San Diego
Neuropathy Action Foundation
MET Crusaders
PDL 1 Amplifieds
The Wall Las Memorias
