(UPDATE March 4)
Anthony Cantu, 31, counsels patients at a San Antonio health clinic about a daily pill that prevents HIV infection. Last summer, he started taking the drug himself, an approach called pre-exposure prophylaxis, better known as PrEP. The regimen requires lab tests every three months to ensure the powerful medication does not harm his kidneys and that he remains HIV-free.
But after his insurance company, Blue Cross and Blue Shield of Texas, charged him hundreds of dollars for his PrEP lab test and a doctor’s visit, Cantu panicked, fearing an avalanche of bills every few months for years.
“I work in social services. I am not rich. I told my doctor I couldn’t continue PrEP,” said Cantu, who is gay. “It’s terrifying to have such high bills.”
A national panel of health experts concluded in June 2019 that HIV prevention drugs, which reduce the risk of sexual infection by more than 90%, are a critical weapon in stemming the AIDS epidemic. Under provisions of the Affordable Care Act, the decision to consider PrEP an effective preventive service triggered rules requiring health insurers to cover the costs. Insurers had until January 2021 to comply with the decision.
Faced with reluctance from the insurance sector, the The Ministry of Labor clarified the rules in July 2021: Medical care associated with a PrEP prescription, including doctor’s appointments and laboratory tests, should be covered at no cost to patients.
More than six months later, that federal push has failed.
In California, Washington, Texas, Ohio, Georgia and Florida, HIV advocates and clinic staff say patients are confused by forms that hide drug costs and inaccurate bills for services. auxiliary medical personnel. The costs can be daunting: a monthly supply of PrEP costs $60 for a generic and up to $2,000 for brand-name drugs like Truvada and Descovy. That doesn’t include quarterly lab tests and doctor visits, which can total $15,000 per year.
“Insurers are very smart and have a lot of employees,” said Carl Schmid, executive director of the HIV+Hepatitis Policy Institute. They “do forms in a way that makes it look like I’m going to have to pay, and that’s one of the obstacles.” They don’t show that this is free for people and in an easy way.
Schmid found repeated violations: confusing drug formularies that incorrectly assigned copayments; PrEP medications listed in the wrong tier. Some plans offer free access only to Discoverya drug patented by Gilead Sciences tested only in men and transgender women and not approved for use by the FDA for women having vaginal sex.
More than 700,000 Americans have died from HIV-related illnesses since the AIDS epidemic began in 1981. But compared to its devastating effects in the 1980s and 1990s, HIV is now largely a chronic disease in the United States. -United States, managed by antiretroviral treatment capable of suppressing the virus to undetectable – and non-transmissible – levels. Public health officials now encourage routine testing, condom use and pre-exposure prophylaxis to prevent infections.
“Contracting HIV or AIDS is not one of my fears,” said Dan Waits, a 30-year-old gay man who lives in San Francisco. “I take PrEP afterwards. This is a huge change from a generation ago.
Yet 35,000 new infections occur each year in the United States. according to KFF. Of these, 66% occur during sexual intercourse between men; 23% through heterosexual relationships; and 11% involve injecting illegal drugs. Black people make up nearly 40% of the 1.2 million U.S. residents living with HIV.
HIV prevention drugs, including a long-lasting injectable approved by the FDA last December, are key to reducing the rate of new infections among high-risk groups. But adoption has been slow. About 1.2 million Americans at risk of HIV infection should take the pills, according to the Centers for Disease Control and Prevention, but only 25% do, and their use among black and Hispanic patients is especially low.
“Until we can increase the use of PrEP in these communities, we will not end the HIV epidemic,” said Justin Smith, director of the Campaign to End AIDS in health centers. Positive Impact Health Atlanta. Among U.S. metropolitan areas, Atlanta has the second highest rate of new HIV infections, after Miami.
Women remain a neglected group when it comes to PrEP education and treatment. In some urban areas, like Baltimore, women make up 30% of people living with HIV. But women have been largely ignored by PrEP marketing efforts, said Dr. Rachel Scott, scientific director of women’s health research at MedStar Health Research Institute in Washington, DC.
Scott runs a reproductive health clinic that cares for HIV-positive women and those at risk of infection. She advises women whose sexual partners do not use condoms or whose partners are HIV positive and women who have transactional sex or share needles to consider the HIV prevention pill. Most, she says, are completely unaware that a pill could help protect them.
Since Truvada, the first HIV prevention pill authorized by the FDA, was approved in 2012, cheaper generic versions have entered the market. While a monthly supply of Truvada can cost $1,800, generic prescriptions are available for $30 to $60 per month.
Even though drug costs have decreased, lab tests and other related services are still billed, advocates say. Many patients are unaware that they do not have to pay out of pocket. Adam Roberts, a technology project manager in San Francisco, said his company’s health insurer, Aetna, has charged him $1,200 a year for the past three years for his quarterly lab tests.
“I assumed it was the cost of treatment,” said Roberts, who heard about the problem from a friend in January.
Enforcement of coverage rules is the responsibility of state insurance commissioners and the Department of Labor, which oversees most employer health plans. But enforcement depends largely on patient complaints, said Amy Killelea, an Arlington, Va.-based attorney who specializes in HIV policy and coverage.
“It’s the employer plans that are the problem right now,” said Killelea, who works with clients to appeal charges to insurers and file complaints with state insurance commissioners. “The current system does not work. There must be real sanctions for non-compliance.
A Department of Labor spokeswoman, Victoria Godinez, said people who have concerns about whether their plan meets the requirements should contact the Department of Labor. Employee Benefits Security Administration.
Even as they push for broader implementation, HIV organizations are taking one small victory at a time.
On February 16, Anthony Cantu received a letter from the Texas Department of Insurance informing him that Blue Cross and Blue Shield of Texas had restated his claims for PrEP-related laboratory costs. The insurance company assured state officials that future claims submitted under Cantu’s plan “will be reviewed to ensure that Affordable Care Act preventive services would not be subject to coinsurance, a deductible, co-pay, or dollar cap.”
The news was welcome, said Schmid of the HIV+Hepatitis Policy Institute, but “it shouldn’t be that difficult.”
(Correction: This article was revised as of 7 p.m. PT on March 4, 2022 to clarify that, among U.S. metropolitan areas, Atlanta has the second highest rate of new HIV infections, after Miami.)
