The silent tragedy of the COVID-19 pandemic is its devastating impact on people with other health conditions. For those illnesses, declining attention has persisted even as the threat of COVID-19 is declining.
HIV provides a striking example of the setback — and how the effects are looming in the shadows. In December, President Biden set a goal of reducing new HIV infections to just 3,000 a year by 2030, a decline of more than 90 percent from current levels. That goal is achievable as long as Congress and the administration are putting the right policies in place and people can access and afford their medications.
Before the COVID-19 pandemic, efforts to reduce HIV in America was meeting some success — for a combination of reasons, including the mobilization of resources to get people tested and into care and the development of improved antiretrovirals for treatment and of PrEP for prevention. By 2019, annual deaths from AIDS had declined by more than 70 percent from their peak in the mid-1990s.
But while new HIV cases were dropping overall, serious problems remained. Southern states were especially hard-hit, as were transgender women and other marginalized groups. Cases were rising among Blacks and Hispanics, who in 2018 accounted for 70 percent of HIV cases.
As health workers struggled to reach the most vulnerable, to educate, screen, and get them the therapeutics they required, the COVID-19 pandemic struck. Clinics, critical sites of HIV testing and prescribing, shut down or reduced their hours, and Americans became reluctant to visit health facilities for fear of COVID.
A study by Kevin Delaney of the Centers for Disease Control and Prevention (CDC) and colleagues found that between March and September 2020, HIV tests declined by nearly 700,000 over the same period a year before. Another study found that screening in four U.S. cities fell between 68 percent and 97 percent. One San Francisco clinic found that the odds that its patients’ viral loads were not suppressed jumped 31 percent with the pandemic.
CDC researchers last month concluded that the “pandemic disrupted an increasing trend in PrEP prescriptions in the United States.” There were 25 percent fewer new PrEP users than were expected for the year ending March 2021, “highlighting the need for innovative interventions.”
Treatment and prevention are essential to our nation’s HIV response. While our elected officials are making decisions about the future of drug pricing, we need to understand any unintended consequences of “prescription drug negotiations” — which, in reality, would be government price controls.
Ask any economist — price controls have an undeniable effect: They reduce supply — in this case, the availability of medicines for the most underserved patients. Recent research found that while the “U.S. had access to nearly 90 percent of novel medicines launched between 2011 and 2018, in other developed countries where price control mechanisms operate, the availability of new medicines was only 47 percent.” A study by Charles River Associates projects that through 2035, a price-setting policy for HIV medicines will lead to a 22 percent decline in R&D investment and more than 500 fewer clinical trials.
In an Oct. 6 letter to the leaders of the Senate Finance Committee, my organization and 45 other health care groups representing millions of Americans laid out a framework for actions Congress can take right now to improve patient affordability. We advocate for capping out-of-pocket costs for Medicare Part D and allowing seniors with high annual drug costs to pay smaller amounts throughout the year rather than large sums all at the beginning of the year. We recommend passing rebate savings on to patients by basing cost-sharing on post-rebate drug prices rather than list prices and ensuring copay assistance counts towards beneficiary deductible and out-of-pocket expenses. Also, we highlight the importance of rules to guarantee that the design of drug insurance plans don’t discriminate against the most vulnerable beneficiaries by saddling them with heavy cost-sharing requirements.
The Biden administration has made some positive steps to address patient affordability, some of which can be found in their recent Notice of Benefit and Payment Parameters for 2023 proposed rule. They require issuers to offer standardized plans that utilize copays rather than co-insurance, and regulation that makes clear it is discriminatory to design insurance plans that put all drugs to treat a certain condition on a high tier. However, in a joint letter to HHS Secretary Xavier Becerra we express our extreme disappointment with their inaction on copay accumulator adjustment programs — by which insurers and pharmacy benefit managers refuse to apply the amount of copay assistance to out-of-pocket costs and deductibles. As a result, patients who can’t afford their medicines do not fill prescriptions, risking more serious illness.
At a time when the COVID-19 pandemic is still reverberating, especially through the most vulnerable groups, public officials must recognize that even small changes to policies can have massive unintended effects, and instead, evaluate the tools they have in their toolbelt.
Some 1.2 million Americans are living with HIV, and another 1.2 million are candidates for PrEP; drug companies are working on long-acting treatments and preventive drugs, investing in cure research, and even effective vaccines. We also must ensure that all populations impacted by HIV can get the care they need. The way to advance policy solutions is to keep focusing on the goals: access and affordability.
Carl Schmid is executive director of the HIV+Hepatitis Policy Institute. He served from 2018 to 2021 as co-chair of the Presidential Advisory Council on HIV/AIDS.