Trumpcare Could Drag Us Back to When HIV Meant Death

Their proposed budget includes a $168 million reduction in funding for HIV prevention programs.
June 21, 2017, 12:00pm
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It isn't enough to live in constant fear of the Affordable Care Act (ACA) being further dismantled. The GOP now appears poised to stand in the way of a major goal: ending HIV transmission in the United States. Republicans' proposed alternative to the ACA—in particular its drastic cuts to Medicaid—combined with the party's general hostility toward LGBT people, could make the first FDA-approved HIV prevention drug inaccessible to the people who need it most before they even have a chance to try it.


While there is not yet a vaccine or a cure for HIV, there is a pill that can prevent it: Truvada, which is known as pre-exposure prophylaxis or PrEP when taken for preventive purposes. If taken daily, Truvada has been shown to be over 92 percent effective in preventing HIV transmission during sex. In IV drug users, PrEP decreases the risk of contracting HIV by over 70 percent. Many experts believe that, in concert with other practices like condom use, HIV treatment, and harm reduction programs for drug users, PrEP could help end the spread of HIV.

Nearly 80,000 people started taking PrEP between 2012 and 2015. However, access lags outside major cities. Many medical providers are not yet comfortable prescribing PrEP, and in some cases are not even familiar with it. Current PrEP patients, medical providers, and activists are worried that the situation is about to get worse, because those who stand to benefit the most from PrEP are those whose lives the GOP has little interest in saving: men who have sex with men, transgender people, sex workers, IV drug users, and people whose partner or partners, are HIV positive or of unknown HIV status.

The Trump administration's public health policies are straight out of a broken time machine. President Trump's proposed budget includes a $168 million reduction in funding for HIV prevention programs. Secretary of Health and Human Services Tom Price belongs to a physicians' association that, among other bizarre positions, claims HIV does not cause AIDS. During his first run for Congress, current Vice President Mike Pence suggested that funds from HIV/AIDS programs should instead be spent on conversion therapy. During his tenure as governor of Indiana, Pence's anti-abortion policies led to the closure of several Planned Parenthood clinics, which researchers believe contributed to an HIV outbreak in the state.


Most devastating in terms of PrEP access are the GOP's proposed cuts to Medicaid. Truvada is expensive: Without health insurance, the pills alone can cost more than $1,500 per month. Even with insurance, copays range up to $500. Medicaid is the largest payer in the country for HIV care and prevention services, and in the 31 states that adopted the ACA's Medicaid expansion, along with the District of Columbia, Medicaid has made PrEP more accessible to low income individuals who are more likely to contract HIV and more likely to die from it. The Republican plan to place per capita limits on federal Medicaid spending will almost certainly cause states to kick people off Medicaid, and could result in less coverage for expensive drugs like Truvada.

A Truvada prescription also requires frequent doctor's office visits, typically for HIV testing every three months, and screening for other STIs and kidney function tests every six or more months. "Truvada was initially created as an antiretroviral to treat HIV. It's not enough to treat HIV on its own—it's usually used as part of a cocktail. If a person does contract HIV and continues taking Truvada alone, you run the risk of that HIV strain becoming resistant to Truvada. The other reason is that if someone is HIV-positive, we want to make sure they know so that they aren't spreading it unknowingly," says Allison Eliscu, an adolescent medicine specialist and PrEP provider on Long Island.


Gilead, Truvada's manufacturer, offers financial assistance to patients. Their co-pay coupon card covers up to $3,600 in expenses per year, which for most people with private health insurance is enough to cover copays completely. However, the Congressional Budget Office estimates that 51 million people will lose coverage should Trumpcare prevail. For those people, Gilead's $3,600 covers less than three months' supply of PrEP. Gilead does offer additional financial help to qualified individuals, but it is unlikely to be enough should private insurers scale back PrEP coverage.

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In addition to these barriers to access along economic lines, geographic location is a major determinant in whether or not someone can get a prescription for PrEP. A large survey of gay men found that awareness of the drug has increased—68 percent of respondents had heard of PrEP in 2015 versus 45 percent in 2012—but significant use was only reported in New York, Washington, DC, Seattle, and San Francisco.

Only 2 percent of respondents in rural areas had used PrEP. Cities offer greater access to health resources in general, and the cities in which higher PrEP use was reported have all run public education campaigns promoting its use. In New York, for example, a large public ad campaign in New York City along with city- and statewide education programs for doctors and patients led to a notable increase in Medicaid PrEP prescriptions.


However, many health providers, especially those outside coastal cities, don't know that Truvada can be used as pre-exposure prophylaxis for people who may be at risk of contracting HIV through sex or needle sharing. (Truvada can also be used as post-exposure prophylaxis, or PEP, for those who have already been exposed to HIV, like survivors of sexual assault or healthcare workers who have experienced needle sticks.) Others refuse to prescribe it due to stigma or because they do not feel they have the appropriate expertise. Others refuse to prescribe it due to stigma or because they do not feel they have the appropriate expertise.

Adam Smith, an educator in Kansas, was living in Oklahoma when he decided to start taking PrEP in 2015. He did not feel comfortable speaking to any of the primary care doctors in his area about PrEP, so he went to Planned Parenthood in Tulsa, Oklahoma. Twice, he has been denied Truvada at a pharmacy: First, because a pharmacy in Oklahoma did not have it and did not know how to get it, and second because a pharmacy in Kansas refused to carry it. Robert Vankirk, a student at Michigan State University, tried to get PrEP from the campus health clinic in 2015. "They said for over a year that they were working on a program to offer PrEP to students and that it was complicated. I knew that was complete bullshit," he says. The clinic only prescribed PrEP to Vankirk when he threatened to file a Title IX complaint against the university.


Jacob Lucas was denied PrEP by a primary care doctor in Muncie, Indiana. "He had expressed that not only was he LGBTQ+ competent but that he also had many patients living with HIV and that he felt that he was very competent in that field. But he said that he didn't feel comfortable prescribing PrEP quite yet so he was going to write up a legal waiver saying basically, 'If something goes wrong, you can't sue us.'" Lucas was willing to sign the waiver, but his doctor ultimately declined to prescribe Truvada.

Eliscu has heard countless stories like this. "I've had many patients say, 'I talked to my primary care doctor and they said there's no such thing.' One patient said his doctor told him not to have sex with other men if he was worried. That's really hard for people because sometimes they know more than their doctor and that makes them question their doctor," she says.

One new option that could alleviate some of these barriers is Nurx, an app that started by offering birth control prescriptions via telemedicine. Nurx now offers PrEP, even facilitating the requisite lab testing. This may help some people cut down costs because it does not require going into a doctor's office. Eliscu believes this is better for patients than having no access to PrEP at all, but says she values the opportunity to counsel patients on their sexual health in person.

"I'm screening patients for more than HIV when I see them. That's another great thing about PrEP—I'm able to detect and treat all STIs more quickly. The recommendation for testing is once a year. Normally, I'm lucky if someone comes in once a year. Plus, when someone comes into my office I'm offering them counseling, I'm reminding them about condoms and good partner choices. It's a risk reduction counseling discussion," she says. Though hospitals are unlikely to stop providing Truvada for employees who have potentially been exposed to HIV, survivors of sexual assault, drug users, and others could be at risk for losing coverage for PrEP under Trumpcare. Many who sought medical treatment after sexual assault are now concerned that it could be considered a pre-existing condition. "It makes me really angry, because I don't want to say I regret going and getting treatment. I think in theory that was the right thing to do for my physical health. The reason I feel any potential regret is because I have a family, and I think of what that could do to insurance costs that don't just affect me. It makes me feel all kinds of survivor's guilt," says Britni de la Cretaz, who took a course of Truvada after a sexual assault in 2011.

"I'm very concerned that HIV risk is going to go up. In general I think the Trump administration has proven that LGBT care and welfare and women's healthcare are not priorities," Eliscu says. At best, PrEP will remain relatively accessible in states that have made it a priority, like New York, California, and Washington. But that leaves millions of Americans in the lurch, and Eliscu is concerned that even those states may not be able to compensate for an insurance collapse.

"If we look at the pattern of what's happening here, it hearkens back to Nancy and Ronald Reagan and the fact that HIV treatment and research was laughed off," Smith says. "What are we going to allow to be termed a preexisting condition? If we go back to the way we were, being gay is a preexisting condition. Testing isn't happening, education isn't happening. Things are killing us and we can't stop them."

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