Stigma: ‘The PrEP Penalty’
Since the beginning of the HIV Epidemic in the United States, advocates have worked to combat HIV-related stigma, and the populations most affected by it. That stigma, in no small part, originates from the messaging and official positions from the country’s foremost public health institutions and the government itself. Starting with the Reagan Administration’s labeling of affected communities under four specific categories, now referred to as the “4-H Club” (homosexuals, hemophiliacs, Haitians, and heroin users), some of those perpetuated by the Clinton and W. Bush Administrations, eased under the Obama Administration, and weaponized by the Trump Administration. Despite each of these past leadership regimes coordinating programing and funding to address the domestic HIV epidemic, they have all participated in certain furthering in stigma by policy, position, or language.
In response, advocates have largely targeted efforts to address social attitudes, with some effort to address policy issues which might define that stigma. One of the challenges of addressing stigma is appropriately defining the real-life experiences of people living with HIV and where, having been diagnosed with HIV, that stigma influences institutional assumptions and wherein power is exercised to affect a person’s life. Much advocacy combating stigma has been focused on modernizing state HIV criminalization laws. Advocates can and should be thinking more broadly, and specifically, around other areas in which people living with and at risk of acquiring HIV might be affected.
In February 2021, this blog published a piece defining that stigma in terms of family courts and child welfare systems and where advocates might find themselves involved in policy work to better protect families affected by HIV from adverse rulings or actions involved in custody and child welfare matters. This is but one example of where specific advocacy, leveraging existing protections, can and does dramatically affect the lives of people living with HIV for the better. Additional advocacy is necessary, including pressure on professional standards, continuing education, and licensing organizations to eliminate stigma and protect people living with HIV interacting with these systems. For example, what might it look like for the American Bar Association to promulgate ethics rules or specifically define that mentioning someone’s HIV status (or gender identity) in a child custody hearing is a breach of professional ethics worth sanctioning? In 1992, the Association of Family and Conciliation Courts warned of high-conflict parents trying to incite biases and assumptions of family court judges with making claims around their ex’s HIV status. These professional associations and those like them have incredible sway and should be realized as an opportunity for advocates to identify new allies.
One tool analyzing these concepts of stigma, and as a result identifying areas of opportunity for advocates to combat same, comes from Doron Dorfman, a law professor at Seton Hall University. In Dorfman’s paper, published in March 2021, The PrEP Penalty, the professor examines how stigma is institutionalized by various agents and agencies of the government as well as the attitudes (and stereotypes) behind the qualifiers of stigma. I got the chance to speak to Professor Dorfman on Thursday, March 30. It just so happened that morning, Judge Reed O’Connor issued a judgment in Braidwood v. Becerra which would gut the Affordable Care Act’s mandate for coverage of pre-exposure prophylaxis (PrEP) with no cost-sharing.
“If you look at the ruling itself, you can see clearly this isn’t about PrEP, per se, but about how O’Connor and the plaintiffs view PrEP as something that ‘encourages homosexuality’,” Professor Dorfman said, speaking to core of what drives stigmatization of PrEP. Recounting initial insurer refusal to cover PrEP and continued problems in ensuring payers are covering both the medication and related, required laboratory screenings for PrEP maintenance, Professor Dorfman argued these positions really center on a ”de-medicalization” of HIV prevention. This concept removes the nature of preventative tools as a medical necessity and conflates engaging protective measures with “enabling” “risk taking” or that patients are engaged in “risk compensation” – compensating behavior to mitigate negative health outcomes while still engaging in activities which are moralized as “undesirable”. Indeed, in his ruling, O’Connor ruled the Religious Freedom Restoration Act claims had standing and were legitimate because the plaintiffs argued providing insurance with PrEP coverage “facilitates and encourages homosexual behavior, intravenous drug use, and sexual activity outside of marriage between one man and one woman.” This argument failed to recognize that HIV can and does pose a risk between married, heterosexual, sero-discordant couples. O’Connor also flatly rejected that the government has a “substantial interest” in preventing new HIV transmissions – or the public health argument. The fact that the government has an interest in preventing new transmissions of an infectious disease of any kind is indisputable and this end of O’Connor’s judgment is likely the weakest of an already weak ruling.
Instead, Professor Dorfman says that patients utilizing PrEP should be appreciate for assessing a risk and working to mitigate the potential negative outcomes. Penalizing PrEP engagement due to these rather naked biases creates a “chilling effect”, discouraging people and whole communities from seeking out necessary medical care. Dorfman compared this to the anti-gay stigma around prostate and colon screenings, wherein heterosexual, cis gender men might avoid seeking out recommended screenings because “getting something put up my butt makes me gay”.
These stigmatizing attitudes and stereotyping are universal around “sexually charged preventative measures”; we see it when people are charged for solicitation as a prostitute because they carried condoms on them, around access to the morning after pill and abortion, and certainly we’ve seen these attitudes around the human papilloma virus vaccine. These attitudes are so pervasive that providers sometimes refuse to prescribe PrEP and, when they are, they may find themselves avoiding doing so for patients in their teens for fear of a parent acting out as a result.
While the Americans with Disability Act 9ADA) and related guidance and rulings have offered some protection for people living with HIV, those protections are not offered to people utilizing PrEP – but they could be, with some creative thinking, in part, because the ADA protects people from stereotypes related to an “assumed” disability. If a situation arose where PrEP use was specifically assumed to mean someone is likely to develop or already has an HIV diagnosis, the ADA protects patients from harmful stereotyping. But that would be extraordinarily specific. Instead of trying to make that stretch, Professor Dorfman thinks seeking out state or federal legislation which prohibits medical discrimination more broadly than disability status could be useful. Similarly, guidance and policies which apply a personalized assessment of risk, tied with scientifically accurate information may also be useful. For example, a personalized assessment in evaluating people for blood donation, rather than a categorical (though, now more limited) ban might create a sense of equity between potential donors and address some of the stigmatizing assumptions that come from the policy.
Professor Dorman has another, forthcoming paper, Penalizing Prevention, which includes case studies – one wherein a parent’s engagement with PrEP was one factor used against them in a child custody matter – that assesses how preventative care is adversely treated by various institutions.
Advocates should consider what it means to define “stigma” and evaluate what comes next. Such as, what are potential policy answers as well as identifying private, professional organizations with power to influence the persons exercising those biases as potential partners in addressing HIV stigma. Invested policymakers should consider a variety of ways, including legislation, regulatory guidance or rulemaking, and requirements attached to grants as a means of combating stigma and promoting a more robust public health landscape. Lastly, funders should consider what it means to have an active and effective strategy for addressing stigma beyond “education” - which of your grantees and partners are getting creative in changing our environment for good? More specifically defining stigma allows us to identify ways in which to address that stigma and make tangible improvements in people’s lives and we should not shy away from exploring these potentials.
