PrEP Under Threat

A judge in Texas recently ruled that a company with a religious founder does not have to pay (through its choice of insurance plans) for its employees to use Truvada or Descovy as PrEP (Pre-Exposure Prophylaxis against HIV). This is obviously part of a long list of recent legislative and judicial attacks on the rights of women and queer people. But it’s also a callback to the good old days when the Reagan administration could have saved thousands, even millions, of lives from the AIDS epidemic, but didn’t, because of homophobia.

HIV and AIDS, a Retrospective

It’s hard for young people to appreciate that, for almost two decades in the United States, and for longer in the developing world, HIV was thought of as an automatic death sentence. People refused to hug family members infected with HIV. Or they would force them to use disposable plates, cups, and utensils. A friend told me stories about people being too afraid to even kiss each other in the early days of the AIDS pandemic. 

Family Struggles

People with AIDS were often abandoned by their families. They struggled to get adequate medical care. Those who had been in long term relationships found that, because those relationships lacked legal status, parents or siblings of their partners were given all the legal rights. They might be forbidden from visiting their sick partner in the hospital, or barred from attending the funeral. And, as those family members became the legal guardians of the estate, queer partners might lose their homes and possessions, because family members might refuse to acknowledge the partner’s right to inherit.

We are talking about queer people who had been estranged from their birth-families. Queer people who had lived their lives in a queer community, apart from their blood-relatives. But in death, the law recognized the legal authority of those relatives. Those estranged, homophobic blood-ties. Over and above the legitimacy of a queer person’s found-family. A grieving partner or spouse was not only grief-stricken but also frequently poverty-stricken. Which put them at further risk to contract HIV (or face some other problem).

Homophobia and Research Money

Homophobia has always been a problem when it comes to HIV. It delayed research into, and approval of, medications that could have prolonged the lives of people with HIV. Queer people and their allies founded groups like ACT-UP to force increased research, drug approval, and the expansion of compassionate use for medications that were still in trials.

Because HIV was primarily viewed as a “gay disease” and thus a moral issue (which doesn’t follow, but never mind), President Ronald Reagan didn’t even mention it in a speech until 1985. His press secretary treated it as a joke in 1982, very early in the epidemic, when a reporter asked about the administration’s response. C. Edward Koop, the surgeon general appointed by Ronald Reagan was prohibited from reporting on HIV until 1986, five years into the epidemic. He didn’t address the general public until 1988 when a brochure called “Understanding AIDS” was mailed to every household in the US.

In spite of the fact that HIV was considered “a gay plague,” the photos in the brochure were of women and children, who, when they contracted HIV, were considered “innocent victims.” Queer men, some of the most at risk for HIV infection, did not see themselves represented in the images in the brochure. 

The Rise of Effective Treatments, Including PrEP

Over 40 years, things have changed a lot. The introduction of AZT in 1987 prolonged the lives of many people with HIV. In the mid 1990s a new class of drugs called protease inhibitors became available. Very soon after that, combination therapy with several different HIV drugs became the standard of care. These advances helped shift HIV from a death sentence to a chronic, manageable illness. Long term survival became much more common. 

The biggest change in forty years is perhaps the introduction of PrEP or Pre -Exposure Prophylaxis. PrEP uses certain anti-retroviral drugs to reduce the risk of HIV infection. First approved for adults in 2012 (and for some adolescents in 2018,) PrEP is more effective than condoms against HIV. It’s so effective that thirteen countries subsidize PrEP or provide it for free. In the US, PrEP is not free, but in 2021, the federal government ruled that nearly all insurance providers had to cover PrEP with no cost sharing for the medication, medical visits related to it, or required lab tests. 

You might think that it would be universally desirable to make such a significant impact on HIV infection rates, right? Except that would mean there was one less arena for people to exercise moral judgement on queer people. 

Texas and the Threat to PrEP Access

In Texas last week we saw yet another example of common sense being uncommon. On September 7, a US District Court judge issued a ruling in favor of a Christian-owned company, Braidwood Management. The company claimed that the mandate in the Affordable Care Act that requires employers and insurance companies to offer plans that provide PrEP for free would force religious employers to cover drugs that enable or encourage “homosexual behavior, prostitution, sexual promiscuity and intravenous drug use.” (If the religious freedom and morality angle of that argument sounds familiar, it’s probably because it’s very similar to the arguments challenging the contraceptive coverage mandate in the Affordable Care Act, and, broadly speaking, every bigoted thing a religious person has said about queer people, sex workers, and every other group that meets their disapproval since at least the 1950s.) 

The Uses and Prohibitive Costs of PrEP

This kind of ruling weighs heavily in a country that doesn’t have universal medical care. One of the biggest barriers to PrEP is the cost. Not just the cost of the medication but the cost of quarterly doctor visits to renew prescriptions along with required tests to monitor HIV status and other things. But it’s an up-front cost that pales in comparison to the cost of the pandemic. “An ounce of prevention is worth a pound of cure,” as the saying goes. The cost of ongoing treatment for an active HIV infection is greater than the cost of preventing it. And it isn’t only queer men (and others who some people like to pass moral judgement on, like injection drug users) who are using PrEP. 

Serodiscordant couples of any sexual orientation (couples where one partner is HIV negative and the other HIV positive) also use PrEP to reduce the risk of transmitting HIV to the negative partner. Sexual assault survivors who want to feel protected in the futuremight choose to use PrEP. 

Larger Threat to Preventive Care

But this attack on preventive care goes beyond the homophobia and stigma that Braidwood Management is using to attack sex, IV drug users and queer men. This attack provides a foundation for threatening all kinds of preventive care. This strategy could be applied to many other types of preventive care. Anything from screening for cancer with mammograms, colonoscopies and Pap smears to neonatal preventive care like newborn metabolic screening or even something as small as the medication used to prevent eye infections in newborns. 

Preventive care saves lives. It enables health care providers to find things before they become major issues. It helps people stay as healthy as possible. LGBTQ+ people already face higher risks of mental illness, substance abuse and addiction. And poorer outcomes for things like cancer or chronic health conditions.

How Medical Professionals Discriminate against Queer People

Furthermore LGBTQ+ people often face discrimination from health care providers. Which may cause them to receive less-than-adequate care, or to avoid receiving routine health care. I’ve had health care providers who insisted on pregnancy tests every time I saw them. Even though my only partner at the time was female.

Apparently in these providers’ minds, it was impossible that I wasn’t sexually active with men. I had to be lying about it. I had another health care provider who didn’t understand when I said I was sexually active with men and women. And forget about a more expansive view of gender with that provider. Coming out to health care providers is often one of the most challenging parts of coming out for me. Because I never know how they might react or how it might affect my care. I prefer to seek care from LGBTQ+ providers or through clinics or organizations that serve the queer community. It feels safer and I don’t worry about my sexual orientation being a barrier to getting appropriate health care. 

Destigmatize Queer People’s Health

Stigma, fear, and homophobia already present enough barriers to safe, appropriate and comprehensive health care without prejudice. This latest ruling in Texas allowing religious employers to opt out of covering PrEP sets the stage for so many negative outcomes by making room for more bias in healthcare. It has the potential to allow a tremendous increase in HIV infection rates and decimating other kinds of preventive care. None of us benefit from or deserve that. 

There’s a bit of Mishnah that says: “Whoever destroys a life, it is considered as if he destroyed an entire world. And whoever saves a life, it is considered as if he saved an entire world.” We know the value of PrEP in preventing HIV. We know the benefits of preventive health care. It’s time to make sure those things are widely available and easily accessible to people, without prejudice.

Part of a series on HIV and AIDS. To read more of the series, visit the links below:

Part 1: The AIDS Epidemic: Fortieth Anniversary
Part 3: World AIDS Day: A Tale of Two Pandemics
Part 4: World AIDS Day: Stories