Covering HIV Is Important — So Is Highlighting the Voices of the Most Vulnerable Communities Affected By It
Two recent cases seem to indicate that a cure for HIV is possible, but there are still obstacles many patients face when seeking treatment.
A couple weeks ago, CNN published an article about a woman who may have been cured of HIV, six years after she had been diagnosed. Researchers announced that they could not find any intact virus that could replicate in her body.
This patient is one of two cases that hint that curing HIV is possible, bringing hope to the broader community of people living with HIV. While progress and research on this continues, though, it’s important to acknowledge the still present barriers getting in the way of treatment for HIV patients. According to Jesse McKinley at the New York Times, HIV diagnoses in 2018 reached 2,481, which is an 11% drop from 2017 and 28% less than 2014’s total. McKinley attributes these positive statistics to a 32% increase in the usage of PrEP (pre-exposure prophylaxis), which is a medicine taken to prevent getting HIV, since 2017. While the increase in PrEP usage and the decrease in infection rates is an accomplishment, access to PrEP is largely restricted to cisgender and gay men.
Cisgender and gay men are not the only people who can be infected with HIV. Vanessa Gonzalez, the Sexual Health Coordinator at New York City’s The Lesbian, Gay, Bisexual and Transgender Community Center, says that because PrEP is only marketed towards men, “women don’t feel as though they need it” and as a result, “women don’t feel comfortable talking about their sexual health” with their doctors.
To help address this problem, many parents living with HIV emphasize the importance of being open about sexual health with kids. Soraya Pares, a mother living with HIV who has a 29-year-old daughter who is also HIV-positive, said that she wanted to talk to her kids about sexual health when they were growing up to make sure they had the information they needed in order to “go and face the world.”
“I recommend being open with your kids in order to have a safer outcome,” said Pares, who works at the Jacobi Hospital in the Bronx as a Program Coordinator for people living with HIV. “I had these conversations with my kids when they were growing up so that they didn’t do it behind my back. It made them feel comfortable talking to me about it and further de-stigmatized it.”
Michelle Lopez, a queer woman of color and HIV-positive parent whose 29-year-old daughter was parentally infected with HIV, works as an Aging Specialist at the Gay Men’s Health Crisis in New York City. For Lopez, talking to her kids about sexual health had made her relationship with them “even better because [they] talk early about racism and sexuality” in addition to HIV-preventative resources such as PrEP, the usage of condoms, and the importance of disclosing one’s HIV status.
“It is important to deconstruct the structures that stigmatize HIV such as the cultural and social taboo of sex talks and the racism, sexism, and homophobia that pervade its treatment,” Lopez said.
In addition to thinking that people should be open to discussing sexual health with HIV-positive people who are economically disadvantaged and/or belong to minority communities, Gonzalez believes that profit incentive prohibits the people most affected by HIV to assume positions of power in which they could solve problems in the community. This deepens issues of access and creates treatment barriers for vulnerable people.
“Even in the non-profit sector, profit-incentivization excludes certain communities such as women from being included in research grants,” Gonzalez said. “The grants have specific requirements that exclude marginalized communities because the people writing these grants are not the people most affected by HIV.”
Moreover, Pares believes that the discussion of mental health is central to the conversation. Pares said that many disregard mental health as part of HIV treatment. The stigma surrounding people living with HIV, she said, “does not make it normal to speak to a social worker or depression specialist about mental health. This can lead to people using drugs to deal with their mental health problems.”
Lopez wants to see more discussions about universal healthcare in HIV-related coverage because she is most “stigmatized from the front-door receptionist” when they realize that she receives Medicaid. Because of this, Lopez said, “[she has] to wait five or six hours to receive care from my doctor when I should be waiting at most at most one hour.”
When the structural economic disadvantages and disparities in healthcare quality posed by the American multi-payer healthcare system are not central in conversations about HIV treatment, the discussion is only surface-level. While some may argue that talking about HIV in general helps de-stigmatize it, without understanding the structural disadvantages experienced by the most vulnerable members of this community, its coverage in the news can misinform.
“News coverage plays a role in stigmatizing HIV,” Lopez said. “It’s talked about as if it only affects gay men and that PrEP is a cure-all. Women do not have equal access to information or to PrEP. This is something that needs to be talked about.”
It’s true that we should be hopeful that an HIV cure will come, as the CNN article suggests, but it’s not necessarily the case that if and when a cure comes, everyone will have equal access to it. The first step in making sure that happens is to pay attention to the most vulnerable communities affected by the virus. People living with HIV “have come through tsunamis and now are riding through storms. HIV/AIDS does not need to be devastating anymore, but it does not need to be a bed of roses either,” Lopez said “It needs to be shared and used as a mechanism that educates society.”
