Testimony, Comments, & Letters

FederalState

Comments on Oregon PDAB draft 2026 drug review preliminary list

Affordability reviews of HIV medications are unlikely to fully capture the complexity and interdependence of safety net programs, which not only ensure affordability for patients but also sustain the broader HIV care infrastructure. While we recognize the Board’s current position to not seek upper payment limit authority, reviewing medications like Biktarvy, Descovy, and Emtricitabine-Tenofovir based on list price alone (despite their actual affordability for the vast majority of patients) could have significant unintended consequences. Such reviews risk creating systemic uncertainty for manufacturers, healthcare providers, and safety net programs that rely heavily on drug rebates to fund essential wraparound services. Ultimately, this instability could undermine the delicate balance required for continued investment in the transformative advancements our community relies on, including longer-acting treatments, preventive therapies, vaccines, and the pursuit of an eventual cure.

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Arkansas Medicaid community engagement reporting requirement and people with HIV

We write to urge the Arkansas Medicaid program to include an explicit exemption for all people living with HIV from the community engagement reporting required under HR 1. People with HIV are living with a lifelong serious and complex medical condition and have special medical needs: they cannot stay healthy without continuous access to their lifesaving HIV treatment.  Any gap in treatment risks serious health consequences, including failure of viral suppression and the risk of onward transmission.  Longer treatment gaps are potentially disabling, allowing progression to AIDS, after which life expectancy is limited.

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Nebraska Medicaid community engagement reporting requirement and people with HIV

We write to urge the Nebraska Medicaid program to include an explicit exemption for all people living with HIV from the community engagement reporting required under HR 1. On May 1, Nebraska intends to become the first state in the nation to implement the new community engagement requirements. People with HIV are living with a lifelong serious and complex medical condition and have special medical needs: they cannot stay healthy without continuous access to their lifesaving HIV treatment.  Any gap in treatment risks serious health consequences, including failure of viral suppression and the risk of onward transmission.

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Coverage of preventive services is a legal requirement

Carl Schmid commented on the JAMA Viewpoint piece “Subscription-Based Pricing for Lenacapavir—Learning From Hepatitis C and Cabotegravir,” taking issue with the authors’ dismissal of advocates focus on insurer’s responsibility to follow the law and cover PrEP as a no cost preventive service and offering comments on the hepatitis C subscription model and the need for a comprehensive PrEP program to increase uptake.

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Gilead Sciences v Maritain Health reply to opposition to file an amicus brief

Five patient groups, led by HIV+Hep, submitted an amicus brief in Gilead Sciences v Meritain Health to describe the harm of employers forcing patients to use alternative funding programs and illegally imported prescription drugs. Meritain Health et al opposed the admission of our amicus brief, and we replied with this brief that Meritain’s opposition shows a lack of concern for the patients for whom we advocate. The Court ruled that the brief be accepted.

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