HIV Long-Term Survivors Awareness Day is held every year on June 5th. This year’s commemoration marks the 37th anniversary of the U.S. Centers for Disease Control and Prevention reporting on June 5th, 1981 about five cases of rare pneumonia affecting young, gay men living in New York and California. This was later to be defined as the beginning of the HIV and AIDS epidemic. Today, 26% of all 1.4 million people living with HIV in the U.S. became positive before 1996, meaning they are long-term survivors. HIV Long-Term Survivors Awareness Day is a day to acknowledge the unique barriers and commit to providing ongoing support to those who have been living with HIV for 25-plus years.
The 2018 theme is “HIV It Is (Still) Not Over” because communities are focused on goals of ending AIDS and prevention, which leaves those living the longest with HIV feeling left behind. While taking strides to end AIDS must happen, we must take care of the needs of those who have lived with HIV for 25-plus years.
Those who have lived with HIV for decades can describe the psychosocial complications they face.
We can imagine the trauma of receiving an HIV diagnosis before one had access to life-saving antiretroviral treatments (ART). We can imagine the stigmatized identities, rejections, criminalization that those who are living with HIV have faced over the last 30 years. We can imagine the physical pains those who entered human drug trials in real time, taking a harmful treatment of AZT just to stay alive.
L., a woman diagnosed in July 1987 describes, “No one talked about it. Even my boyfriend who gave it to me–we never talked about it. No one was telling women to get tested. I remember seeing a commercial in the 80s when living in California, telling gay men and drug users to get tested for AIDS and I remember thinking to myself ‘I wonder if that means me, too.’ It wasn’t really a shock when I heard I had HIV–but waiting two and a half weeks to find out was rough.”
Living with HIV
Despite this historical trauma and stigma, those living with HIV are resilient.
C., a man diagnosed in 1994, reports that the invention of ART medications was life-changing, “I felt like I’ve been given a second chance in life. That’s where all my positivity comes from. It’s been 24 years, almost a quarter century and I have so many friends and family who have been supportive.”
Remarking about the change in perception about HIV over the years, “people are so much easier to accept me now, they don’t bat an eye when I tell them I’m living with HIV. The key word there is living with HIV.”
L., also describes positivity, “I’ve met a lot of great people as a result of being a long-term survivor. The best thing has been seeing more acceptance as the landscape has changed. I’ve told a lot of people and most everyone has been accepting. I don’t allow them not to be. The worst part of being Poz has been losing my daughter to complications. I try to keep such a positive and upbeat attitude. Like anyone, I’ve been through a lot of crap.”
In closing, I leave you with the 2018 HIV Long-term Survivors Day (HLTSAD) goals:
- HIV and aging are complex and nuanced. HIV Long-term Survivors are aging but constitute a distinct cohort of different medical and psychological challenges including AIDS Survivor Syndrome, poverty, isolation, and invisibility.
- In our haste to End AIDS prioritize the 2018 modern-day needs of HIV Long-term Survivors.
- Survivors are a valuable part of our communities we need to empower them to become the elders, leaders, and teachers.
- Celebrating HIV Long-term Survivors for enduring a historically unique epidemic and being the pioneers of the AIDS pandemic.
- Prioritize HIV Long-term Survivors culturally-aware healthcare and mental health.
- Move beyond survival, the goal is aging well with HIV.
- Honoring resilience and strength, it took to survive multiple casualties and unprocessed grief while planning to die.
Lacie Tewes is the Prevention and Supportive Services Supervisor in Lincoln for Nebraska AIDS Project.