HIV-positive activist: Why this new bill terrifies me

plate of white caplets

It's no coincidence that American companies led the charge to develop Covid-19 vaccines. Numerous policies — from strong patent protections to a welcoming immigration system — help ensure that the world's smartest scientists can pursue cutting-edge research here.

Many Americans, especially those with HIV, are alive today thanks to this innovation. Unfortunately, these same Americans have the most to lose if a well-intentioned but misguided drug-pricing bill becomes law.

The proposal — the Lower Drug Costs Now Act, or H.R. 3 — would set drug prices, pegging Medicare payments to the average price in six other developed countries.

In these "reference" countries, though, government officials make coverage and payment decisions based on heartless and antiquated cost-benefit analyses, called "quality-adjusted life-years."

These "QALYs" are inherently discriminatory, especially against those living with disabilities or chronic diseases, as they put a dollar figure on "perfect" health. So even when a treatment works exactly as it's supposed to — and brings a patient back to his or her full life — those with underlying health conditions, like HIV, are deemed to never be "worth" as much to government regulators.

Let's be clear. Such analyses are cruel. And by importing other nations' drug prices, we'd be importing such analyses here. In many of the reference nations, government regulators declare hard cut-offs on what they'll spend — and therefore conclude that many patients are essentially "too expensive" to be worthy of care.

This refusal to cover medicines that exceed an arbitrary threshold explains why the average patient in OECD countries had access to only 51 percent of new cancer medications launched worldwide from 2011-2019, while American patients had access to 96 percent.

Currently, QALYs aren't used to determine the cost of drugs in the United States. But under H.R. 3, vulnerable patients would be subjected to discriminatory QALY assessments, just indirectly.

The bill is also concerning because it would discourage research.

Developing new medicines is risky. Fewer than 12 percent of experimental medicines entering clinical trials are eventually approved by the FDA. Drugs that make it to market have to subsidize all these failures. That’s why, on average, it costs $2.6 billion to bring a new medicine to market, according to a Tufts University study.

By tying Medicare's payments to the arbitrarily low prices paid abroad, H.R. 3 would reduce monies available for research and development. One analysis found that H.R. 3 could result in at least 56 fewer new medicines over 10 years.

As a person living with HIV, I've seen the power of medical innovation firsthand. In 10 years, I've gone from taking three pills per day to only one. At the height of the HIV/AIDs epidemic, the disease was a death sentence. But today, thanks to the innovation of the pharmaceutical industry and the incredible antiretroviral treatments it developed, those living and loving with HIV have life expectancies that match those without it.

Encouraging innovation is the best way to help vulnerable patients like me. Unfortunately, H.R. 3 puts patients last.

About the Author

Guy Anthony is the president and CEO of Black, Gifted & Whole.

An award-winning ARTivist, community leader, and philanthropist, diagnosed with HIV as a teen, Guy has dedicated his adult life to the pursuit of neutralizing local and global HIV/AIDS-related stigmatization. He released Pos(+)tively Beautiful: Affirmations, Advocacy & Advice on World AIDS Day in 2012. Guy served as a Program Manager/Coordinator for the Treatment Adherence program at Us Helping Us People Into Living, Inc, a local AIDS service organization serving Black communities in the Washington, D.C., area for two years. In his role at Us Helping Us, Guy worked with newly diagnosed Black gay men to help them come to terms with their status, navigate the complex health care system so they can access care, and develop plans for them to adhere to their treatment regimen and achieve viral suppression.

This piece originally ran in Plus magazine.