Guest Opinion: HHS copay rule threatens HIVers

  • by by Tez Anderson
  • Wednesday August 5, 2020
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Tez Anderson. Photo: Courtesy Tez Anderson
Tez Anderson. Photo: Courtesy Tez Anderson

The survival of people dealing with life-threatening illnesses such as HIV/AIDS often depends on affordable access to prescription medications. Our organization, Let's Kick ASS — AIDS Survivor Syndrome, is concerned that a recent change in the federal rules regarding copay assistance and health plan out-of-pocket maximums will make drugs more expensive. Affordability is a top concern for both patients and caregivers.

Meaningful access to health care is especially important for people living with HIV and those seeking to proactively protect themselves from infections using pre-exposure prophylaxis, or PrEP. The COVID-19 pandemic is already a big concern for HIV/AIDS patients across the country, and without access to antiretroviral medications due to poor policy changes, can have a lasting, devastating effect on the community.

This year marks the 24th anniversary of Highly Active Antiretroviral Therapy (HAART), the treatment strategy that changed HIV from a death sentence to what is now classified as a "chronic manageable illness." It consists of a customized combination of different medications that physicians tailor to the individual characteristics of each patient's disease. It is taken every day for life and can be expensive. The cost of antiviral treatment for HIV has jumped 34% since 2012, four times the rate of inflation. Even with new generic drug options, the yearly cost of treating an HIV patient is still more than $36,000, according to one study.

Obviously, without adequate insurance coverage, this lifesaving treatment could be unaffordable for many HIV/AIDS patients. That is why a new policy in the 2021 Notice of Benefits and Payment Parameters (NBPP) finalized by the U.S. Department of Health and Human Services is so concerning. This new rule allows insurance companies to utilize accumulator adjustment programs, limiting the value of the critical support drug companies provide patients in the form of manufacturer assistance programs, even if that could have deadly consequences for them.

Under current HHS directives, insurers are required to include the value of copay assistance when calculating the payments a patient makes before the total out-of-pocket expense limit is met and insurance pays the entire cost of treatment. But now HHS wants to change that policy to allow insurers to exclude copay assistance from the out-of-pocket maximum.

The idea behind this change, from the government's view, is to encourage patients to choose a less expensive generic alternative to a brand name drug. The current policy accomplishes that cost-cutting goal by allowing companies to exclude copay assistance when a workable generic is available. But for many drugs, including some that enable HIV/AIDS patients to stay healthy and live productive lives, no generic exists. Without cost-sharing assistance, patients must continue to pay high out-of-pocket costs until they have met their maximums. In a high deductible health plan, or HDHP, this can be around $6,900 for an individual, a difficult threshold to meet, which forces the beneficiary to pick up the tab at the pharmacy. If policymakers move forward with the 2021 NBPP, patients could be looking at up to thousands of dollars in additional drug costs when their copay assistance is used up and their maximum has not been reached.

Furthermore, the accumulator adjustment program gives power to insurers and pharmacy benefit managers (PBMS) by allowing them to decide if the patient assistance programs can count towards the maximum out-of-pocket limit. While you would hope these groups would choose to accept cost-sharing assistance programs and help patients, many instead pocket the discounts. This shifts the costs onto patients and may force them to either ration medications or abandon their prescriptions. Not only will this lead to devastating effects on patients, but also it will lead to poorer health outcomes for the entire health system.

All patients, regardless of what type of medical challenges they face, deserve affordable access to their prescription medications. It should not be up to the government or insurance company cost cutters to pick and choose which drugs a patient receives and which they are denied. Now more than ever, it is imperative that treatments and medication remain accessible and affordable and ensure the HIV/AIDS community has the resources and support to recover from the health, economic, and social impacts of COVID-19.

Let's Kick ASS urges everyone to join us in speaking out against accumulator adjustment programs and encourage employers and insurance companies to refrain from implementing them in 2021. Finally, we urge members of California's congressional delegation to join Representative A. Donald McEachin's (D-Virginia) bill, H.R. 7647, as co-sponsors. This bill would delay this most harmful portion of the NBPP guidelines to provide vital relief to patients during this pandemic. Moving forward from this health crisis, we must aim to put patients before profits and protect those in need.

Tez Anderson is the founder of Let's Kick ASS — AIDS Survivor Syndrome. Based in San Francisco, there are chapters in Portland, Oregon; Palm Springs, California; and Austin, Texas. For more information, visit

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