By Bri Silva & Julie Dowling,
Co-Facilitators of This is Us, a support group for women living with or affected by HIV
Henry House is the place she went to die. It was a place that many, over the years, would also go to die in order to spare those they loved the burden of watching them wither away. It was situated among other ranch-style homes in a quaint residential neighborhood about 50 miles north of San Francisco. For three years Julie called this place home, a home that she shared with others who had received the same devastating news – their HIV was now advanced stage AIDS and they were dying. Today, 25 years later, people in the US living with HIV/AIDS (PLWHA) don’t have to face this harsh reality any longer. With early intervention and medication adherence, PLWHA can expect to live just as long as their HIV-negative peers.
Early intervention means getting every newly infected person promptly into care. Medication adherence means consistently taking the medication regimen prescribed by your doctor. It sounds simple and it can be simple – if only it were that easy. There are many reasons why newly infected people don’t seek out an HIV test; however, stigma against HIV is one of the biggest barriers to testing and treatment at every step along the way.
Julie might never have known her status if it weren’t for that accidental needle stick in 1991. As a public health nurse, she was required to take an HIV test immediately following the needle stick – standard protocol, nothing to worry about. It never even crossed her mind that she could be HIV-positive. Julie’s test came back in the customary one week timeframe. When it did, she was brought into a room and told her status. Not only was she HIV-positive, her T-cell count was 110, which meant she had advanced stage AIDS. As a medically trained nurse, she knew that having a T-cell count as low as hers meant that she had been living with HIV, undiagnosed, for quite some time. She started thinking about how sick she had been off and on for the past year and a half. She thought about every time she had been to the doctor, with a fever and a cold she just couldn’t seem to shake. After running test after test, they never could find what was ailing her. Was it her privilege – as a straight, white, educated woman, the antithesis of what the world thought of as an AIDS patient – that kept the doctors from even thinking to test her for HIV all those months she was so sick? Was it her privilege that kept her from thinking to ask about an HIV test? Or maybe it was the stigma?
No one had said it loud enough yet. HIV is a disease that does not discriminate. So why do we discriminate against people living with HIV/AIDS? Especially when that form of discrimination, or stigma, is the single largest barrier between us (in the United States) and the ultimate goal of GETTING TO ZERO. Zero new infections and zero deaths by 2030.
After being diagnosed with advanced stage AIDS, Julie was given another 1-2 punch – she had an opportunistic cancer as well as cytomegalovirus which, for someone with a compromised immune system, could be, and was for many, a death sentence. It was around this time that she decided to go to Henry House, a hospice for people in the final stages of a life stolen by this uncaring, indiscriminate disease. There she was surrounded by others just like her, and not like her, for they were all men – mostly gay men. These men became her friends, her family, “her boys” she says as she loving recalls that time in her life. For three years she watched them die, one by one, seeing her own future in each of their wasting faces.
Today, in 2019, as Julie and I are preparing to take our women’s group to the Academy Of Sciences to explore their “Skin” exhibit, I think about how, and why, this woman, who was on the brink of death, survived when so many around her were succumbing to the finality of this disease.
Julie’s story is miraculous. Her story gives hope. Her story has value. And Her-story is different than His-story. We know that women and men respond differently to HIV infection and that they acquire different side effects from the same medications. In 2016, 23 percent of PLWHA in the US were women. That same year, an analysis by the charity AMFAR found that women represented a mere 11% in cure trials. Trials of antiretroviral drugs fared slightly better with 19 percent of participants being women. Vaccine studies were the closest to equitable participation, at 38 percent, except there are still no known vaccines available.
There is zero indication that transgender individuals are being included in these clinical trials and studies of potential HIV treatments, cures, and vaccines; however, the CDC reports that a meta-analysis of 88 studies published from 2006-2017 confirmed that transgender individuals are disproportionately affected by HIV. Prevalence of HIV was 9.2 percent for transgender people overall. By comparison, the estimated HIV prevalence for cisgender adults in the U.S. overall is less than 0.5 percent.
Not only are transgender individuals underrepresented in these studies, they are receiving care at consistently lower rates than their cisgender counterparts. One in five transgender women in the US living with HIV/AIDS reports refusing medical care. The #1 reported reason was fear of anticipated discrimination, not only for their HIV status, but just for being who they are. We need effective strategies to reduce and dismantle these life threatening stigmas that affect the lives of PLWHA. We need culturally competent outreach, treatment and care across the continuum. We need resources scaled up in settings that are most heavily impacted by the HIV epidemic. We need to remember that HIV is a disease that does not discriminate.
I’ve been thinking about effective strategies to break through stigma. I think sharing stories can be an effective tool. I know that Julie has many more stories to share, that all PLWHA have important stories to share. It’s our job to listen and hold space for these stories with open minds and hearts. It’s our job to educate those who remain in the dark, because education is the key to breaking down and eliminating stigma.
As the last living resident who once called Henry House home, Julie is a survivor. One of the few who made it through some of the darkest times of the epidemic and emerged on the other side scathed, but not broken.