The Changing HIV Landscape: A World AIDS Day Reflection
As a college student, I co-led my university’s AIDS advocacy and service organization and spent one evening a week at a local residence for people living with AIDS. Fifteen years later, I’m struck by how dramatically antiretroviral therapy has improved the HIV treatment landscape — at least where people have access to treatment. But I’m also disheartened at how little the stigma surrounding HIV, or the misconceptions about how it is transmitted, have changed.
Back in the late 1990’s and early 2000’s at my volunteer assignment, I was often tasked with running the front desk or helping cook and serve dinner. But mostly I was there to provide companionship for the residents.
Even at that young age, I realized I was benefiting more from my time at the house than the people who lived there. But as an adult, I look back and am deeply touched by how welcoming many of them were to me — a young stranger coming into their home.
A brilliant and beautiful soul, Wayne used to make me laugh uncontrollably. Vicki gave the best hugs. Stan gave the wisest advice. Clifton adored Dawn, and they both told crazy stories. Hector was the first person to talk to me. Calvin was young like me. Infected with HIV during a childhood blood transfusion, he was angry about the path his life had taken. Ben loved to dress up. Anna suffered from mental illness — after she stopped living at the residence, I’d see her ranting in the subway stops. She never recognized me. Joe suffered from dementia, but his incredible son visited almost daily and seemed unruffled by it. Scott and I discovered we had mutual friends, and we’re still in touch today.
These people weren’t just polite to me when I visited. Many became mentors and friends. They counseled me through breakups and celebrated my graduation. They were facing unimaginable hardships, but they were kind and generous to me. They still inspire me, though most of them are long gone.
This was an era when people were still taking 70 pills a day and enduring the cruel side effects. People were suffering from Kaposi’s sarcoma, dementia, and wasting syndrome. People were dying.
Still a teenager myself, I watched many people live out their last days. Each death chipped away at my heart. Playing a small part in some of these people’s final journeys was a humbling and life changing experience.
The physical challenges of HIV and AIDS were hard, but the social and emotional challenges— the stigma and isolation — were possibly harder. Residents had arrived at this group home after losing their own houses, along with their jobs, family, friends, and much more.
Fortunately, science and medicine have advanced greatly in the last two decades. HIV is now treated with regimens of one or a few pills a day — a far cry from the 60 or 7o pills a day people were taking just two decades ago. While in the past, HIV treatment might have bought more time but ultimately still meant opportunistic infections and early death, current HIV treatments allow many people to live long, relatively healthy lives. Antiretroviral therapy has turned HIV into a chronic but manageable condition. Furthermore, we’ve learned that adherence to treatment can bring one’s viral load to undetectable levels, which greatly reduces the risk of HIV transmission. We’ve learned that we can prevent mother-to-child transmission of HIV and even encourage mothers living with HIV to breastfeed their babies without passing on the virus.
I’m not sure the general public’s understanding of HIV has kept pace. More and more people are living with HIV rather than dying from AIDS. Yet people living with HIV continue to face stigma and judgment. We continue to hear misconceptions about how HIV is transmitted — for example, Jenny McCarthy’s recent insinuation that Charlie Sheen, who recently announced he is living with HIV, put her at risk by engaging in an on-stage kiss. Just as dangerous are the misconceptions of many engaging in risky behavior who do not believe they are at risk or that they could be putting others at risk.
To be sure, the scientific community has more work to do in order to advance treatment options and develop stronger and more accessible prevention options, including a vaccine.
But those of us working on knowledge management for public health must also work harder to make sure that the science of HIV prevention, transmission, and treatment is translated into clear, simple, actionable messages for the public.
We must work harder to educate the general population, and particularly high-risk populations, on HIV risk. (The recent and dramatic HIV outbreak in rural Indiana is just one sign that we’re failing at this task.) We must work harder to ensure that people understand the many ways HIV is not transmitted in order to minimize fear and stigma. And we must work harder to foster understanding of what it means to live with HIV in the 21st century. It’s time for HIV knowledge in America to catch up with the medical advancements that have been made. If the U.S. expects to be a global leader in HIV prevention, treatment, and eventual eradication, we must demonstrate leadership at home as well.
Did you find this article helpful? Follow the The Exchange for more useful, step-by-step information on how to better curate, synthesize, and share knowledge. Want more information about HIV and AIDS? Start with the basics.
The Exchange is a K4Health publication. The Knowledge for Health (K4Health) Project is supported by the United States Agency for International Development (USAID) Office of Population and Reproductive Health, Bureau for Global Health, under Cooperative Agreement #AID-OAA-A-13–00068 with the Johns Hopkins University.
The contents are the responsibility of the authors and do not necessarily reflect the views of USAID or the U.S. Government.
