Stakeholder Comment on Odefsey Affordability Review – HIV Access and Systems Considerations

Dear Members of the Prescription Drug Affordability Board,

On behalf of HealthHIV, thank you for the opportunity to comment on the ongoing affordability review of Odefsey. We appreciate the Board’s commitment to ensuring Oregon residents can access necessary medications while balancing broader concerns about system-wide costs. As an organization engaged in HIV policy and access across the country—and with longstanding collaboration in Oregon—we write to raise concerns about how affordability determinations for HIV medications must account for their unique ecosystem context and the disproportionate risks of unintended harm.

HIV Medication Access Considerations:

Odefsey is part of a class of single-tablet regimens (STRs) often recommended due to their clinical effectiveness, tolerability, and high adherence potential. In Oregon, these medications are primarily accessed through public health infrastructure, including Ryan White Part B contractors, CAREAssist (Oregon’s AIDS Drug Assistance Program), and 340B-covered entities.

While STRs like Odefsey may not be the lowest-cost option on paper, they are often the most cost-effective in practice, especially for long-term survivors of HIV, because they reduce hospitalization, support sustained viral suppression, and help avoid costly treatment disruptions. Forcing a switch from STRs to lower-cost alternatives may appear straightforward on paper, but in the real world, these transitions carry cascading clinical and logistical consequences.

Patients often have existing inventory on hand, meaning the timing of any change must be tightly managed to avoid waste or treatment gaps. High-acuity patients often require intensive case management support during these transitions, adding costs and staffing demands for Ryan White programs already operating at capacity. Pharmacies may not stock the replacement medication consistently, leading to new pickup routines at potentially unfamiliar locales, which can easily lead to potential drop-offs in adherence.

For providers, formulary replacements, switching to therapeutic equivalents or alternatives, must be clearly communicated, not only to ensure patient understanding but also to minimize confusion in prescribing and monitoring. Side effects and efficacy differences between regimens can trigger further clinical follow-up, especially in aging populations with comorbidities. And because insurance billing systems often lag behind clinical decisions, patients may face denials or delays that interrupt access altogether.

Put plainly: medical switching for cost reasons isn’t free. It introduces tangible risks to care continuity, inflates downstream system costs, and creates new burdens, precisely for the populations least able to absorb them. STRs like Odefsey were designed to help stabilize care in fragile systems. Undermining that stability risks trading short-term savings for long-term setbacks.

The success of HIV care in Oregon is due in large part to sustained investment in treatment continuity, viral suppression, and provider-patient trust. Undermining regimen stability for cost reasons—particularly for people aging with HIV—threatens decades of hard-won progress.

Healthcare Ecosystem Considerations:

Additionally, affordability reviews that rely mostly on commercial payer data or per-prescription averages risk overlooking this real-world context. In 2023, an estimated 500+ Oregonians were prescribed Odefsey. For the vast majority, out-of-pocket costs were minimized through a complex but functional web of public assistance programs and manufacturer support. However, any affordability ruling—especially one that paves the way toward a potential Upper Payment Limit (UPL)—could alter pharmacy benefit structures and patient access without reducing actual system costs. Worse, it could introduce barriers to care for people already navigating stigma, poverty, housing instability, and other structural health inequities.

HIV care is not interchangeable. Patients and providers work together to select a regimen based on comorbidities, prior resistance, and side effect profiles, particularly for long-term survivors who are now aging with HIV and facing new chronic conditions. Limiting access to specific regimens like Odefsey may require some individuals to switch to multi-tablet alternatives that increase adherence challenges or drug-drug interactions. In a communicable disease context, this is not just a basic inconvenience—it feels like a public health gamble, especially in today’s political environment where 340B reform looms and drug-pricing initiatives are constantly evolving.

We also remain concerned that the Board’s dashboard and current methodology do not fully reflect Oregon’s safety-net systems or integrate patient-level affordability metrics. In our earlier comments, we encouraged the Board to distinguish between cost-sharing burdens faced by consumers and aggregate spending calculations used by carriers. In the case of HIV, this distinction is especially critical.

Conclusion:

We urge the Board to assess Odefsey not in isolation, but in light of its role in preventing transmission, sustaining adherence, and improving health outcomes. If affordability reviews move forward, they must both be grounded in full stakeholder engagement—including protected input from people living with HIV and direct-service providers—and avoid triggering formulary disruptions or unintended care gaps.

Thank you ALL for your continued leadership and consideration, especially with HIV populations and their lifelong needs for consistently reliable medication access. As someone who has worked with and for Oregonians, it means a lot personally. 

Sincerely,

Scott D. Bertani 

Director of Advocacy, HealthHIV 

[email protected]

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