Testimony, Comments, & Letters

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Comments to Washington Prescription Drug Affordability Board on HIV treatment and cost of care

Sep 15, 2024

While patients currently have access to free or affordable HIV medications through various avenues, we are concerned that setting an arbitrarily low price for these treatments could negatively impact future drug development and reduce manufacturers’ willingness to continue providing medications to millions of people in underdeveloped and underserved nations. It is essential that manufacturers have the necessary incentives to invest in research and development, enabling the creation of longer-acting treatments, preventive drugs, vaccines, and potentially even a cure for the virus. Overlooking the impact of current assistance programs on HIV treatment affordability, as well as mandating alternative drug options, disregards the nuances of HIV care and the unique requirements of each patient.

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Illinois testimony on PBM treatment of specialty drugs

Sep 11, 2024

I would like to highlight the direct impact of PBM actions on patients, specifically on whether they can access the drug that their provider prescribes and the cost they will pay. Much of this is carried out behind the scenes and without regulation. However, that is beginning to change with more states passing bipartisan legislation to regulate PBMs and even the very partisan Congress is working on federal legislation that will hopefully pass this year.

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Employers and issuers using “non-essential health benefit” prescription drug vendors

Aug 23, 2024

The HIV+Hepatitis Policy Institute found over 150 employers and issuers utilizing outside vendors as part of their prescription drug benefit for their employees that designate certain drugs as “non-essential health benefits” to evade ACA cost-sharing requirements. Most of them implement copay maximizers, under which they keep all copay assistance from drug manufacturers rather than applying it to the patient’s out-of-pocket costs. Others use an alternative funding program, in which carved out drugs are sourced from patient assistance programs meant for the uninsured or by drug importation.

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63 HIV organizations request for updated USPSTF PrEP guidance & issuer compliance

Jul 17, 2024

We, the undersigned 62 organizations dedicated to the fight to end HIV, write to request CMS issue updated guidance in order to ensure issuer compliance with the most recent, updated United States Preventive Services Task Force (USPSTF) recommendation for HIV Pre-Exposure Prophylaxis (PrEP). As community-based organizations, advocacy groups, clinical providers, and public health practitioners working with people and communities affected by HIV, we know the urgency of ensuring broad and equitable access to PrEP free of insurance barriers.

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Oppose domestic HIV programs cuts of over $541 million in Labor HHS approps. bill

Jul 9, 2024

There are currently over 1.2 million people living with HIV in the United States and approximately 32,000 new diagnoses annually, with only 65 percent of people virally suppressed and only 36 percent of the people who would benefit from PrEP on it. While we are making progress, racial, ethnic, gender, and geographic disparities persist, and continued investments are needed to reduce new infections and bring more people into care and treatment.

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