HIV preventive care is supposed to be free in the United States. So why are some patients still paying?

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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 diet requires lab tests every three months to ensure the powerful drug is not damaging his kidneys and that he remains HIV-negative.

But after her insurance company, Blue Cross and Blue Shield of Texas, charged her hundreds of dollars for her PrEP lab test and related doctor’s visit, Cantu panicked, fearing a flurry of bills every day. a few months for years to come.

“I work in social services. I am not rich. I told my doctor that I couldn’t continue with 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 have been shown to reduce the risk of sex-related infection by more than 90%, are an essential weapon. to stem the AIDS epidemic. Under provisions of the Affordable Care Act, the decision to classify PrEP as an effective preventive service triggered rules requiring health insurers to cover the costs. Insurers had until January 2021 to comply with the ruling.

In the face of insurance industry pushback, the Department of Labor clarified the rules in July 2021: Medical care associated with a PrEP prescription, including doctor’s appointments and lab tests, should be covered at no cost to patients.

More than six months later, this federal production has not done the trick.

In California, Washington, Texas, Ohio, Georgia and Florida, HIV advocates and clinic workers say patients are baffled by formularies that hide drug costs and erroneous bills for services medical auxiliaries. 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. This does not include quarterly lab tests and doctor visits, which can total $15,000 per year.

“Insurers are pretty smart and they have a lot of staff,” said Carl Schmid, executive director of the HIV+ Hepatitis Policy Institute. They set up “forms in a way that makes it look like I’m going to have to pay, and that’s one of the hurdles. They don’t show it’s free for people in a simple way.

Schmid found repeated violations: baffling drug lists that wrongly assign copays; PrEP drugs listed in the wrong level. Some plans offer free access only to Descovy, a patented Gilead Sciences drug tested only in transgender men and women that is not cleared by the FDA for use by women who have vaginal sex.

More than 700,000 Americans have died of HIV-related illnesses since the AIDS epidemic began in 1981. But compared to its devastating effects in the 1980s and 1990s, HIV today is largely a disease chronic in the United States, managed with antiretroviral therapy that can suppress the virus to undetectable – and non-transmissible – levels. Public health officials now encourage routine testing, condom use and pre-exposure prophylaxis to prevent infections.

“Getting HIV or AIDS doesn’t scare me,” 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.

Still, 35,000 new infections occur each year in the United States, according to KFF. Of these, 66% occur during sex between men; 23% by heterosexual relationship; and 11% involve injecting illegal drugs. Black people make up nearly 40% of the 1.2 million US residents living with HIV.

HIV prevention drugs, including a long-acting 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. An estimated 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 use among black and Hispanic patients is particularly low.

“Until we can increase the use of PrEP in these communities, we will not succeed in ending the HIV epidemic,” said Justin Smith, director of the campaign to end AIDS in the centers. Positive Impact Health Center of Atlanta. Among metropolitan areas in the United States, Atlanta has the second highest rate of new HIV infections, after Miami.

Women remain an overlooked group when it comes to PrEP education and treatment. In some urban areas, such as 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 the 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 who share needles to consider the HIV prevention pill. Most, she says, are completely unaware that a pill could protect them.

In the years since Truvada, the first HIV prevention pill cleared by the FDA, was approved in 2012, low-cost generic versions 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 gone down, lab tests and other accompanying services are still charged, advocates say. Many patients don’t know they don’t have to pay out of pocket. Adam Roberts, a technology project manager in San Francisco, said his company’s health insurer, Aetna, had charged him $1,200 a year for the past three years for his quarterly lab tests.

“I assumed it was the cost of the treatment,” said Roberts, who learned of the problem from a friend in January.

Enforcement of coverage rules rests with state insurance commissioners and the Department of Labor, which oversees most employer health plans. But the app is largely driven by patient complaints, said Amy Killelea, an Arlington, Va.-based attorney who specializes in HIV policy and coverage.

“It’s the employer-based plans that are the problem right now,” said Killelea, who works with clients to appeal charges with insurers and file complaints with state insurance commissioners. “The current system is not working. There must be real penalties for non-compliance.

A Department of Labor spokeswoman, Victoria Godinez, said people who are concerned about their plan’s compliance with requirements should contact the Department of Labor’s Benefits Security Administration.

Even as they push for wider application, HIV organizations are winning 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 lab fees. The insurance company assured state officials that future claims submitted through Cantu’s plan “will be reviewed to ensure that the Affordable Care Act preventative services would not be subject to coinsurance, deductible, co-payments or dollar maximums”.

The news was welcome, said Schmid of the HIV+ Hepatitis Policy Institute, but “it shouldn’t be that hard.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism on health issues. Along with policy analysis and polls, KHN is one of the three main operating programs of the KFF (Kaiser Family Foundation). KFF is an endowed non-profit organization providing information on health issues to the nation.

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