Long-term survivors of HIV share stories and a message of hope with others
“I was in shock.” “I felt so alone.” These sentiments were shared by a group of long-term survivors of HIV as they reflected on how they felt when they were diagnosed. After living through and overcoming many challenges since the beginning of the HIV epidemic in the United States, long-term survivors know how powerful it can be to share their stories as inspiration to those who might be struggling now.
That’s why the HIV: The Long View Coalition created the Never Alone video series, which helps people who are newly diagnosed or living with HIV feel less isolated and better connect with their community.
In 1990, after Michelle Lopez left a domestic violence situation, she and her infant daughter were homeless and were both diagnosed with HIV. As part of the Never Alone video series, Michelle shares her story. She discusses facing challenges, building a community, and how she started giving back. “If I had not found community, I truly believe I would have been dead,” she says. Michelle, who is now a 51-year-old mother and grandmother, reminds people that “HIV is a diagnosis, it’s not a definition of who you are. You’re not alone, you’re never going to be alone.”
“We are one, big community; no matter our age, our race, our sexual orientation. We need to help support one another,” says Ed Shaw, who lost a cousin to HIV before being diagnosed himself. Ed shares his journey from being isolated and homeless to becoming an activist for himself and others in his newly launched Never Alone video. Ed, a 76-year-old New Yorker who has been living with HIV for 29 years, wants people to understand that “HIV isn’t something you should have to go through alone.”
The video showcase is inspirational to HIV patients
The Never Alone video series is showcasing these inspirational stories to help reframe the dialogue around HIV. The videos address isolation and elevate the discussion about long-term healthier living. The first two videos, featuring Michelle and Ed, are available now. The next installment, will features Kim Watson, a 54-year-old Caribbean African-American woman of trans experience. It will be launching early this summer.
The HIV: The Long View Coalition is a group that aims to reignite the conversation around aging, long-term health, and HIV. In collaboration with Gilead Sciences they work. The Coalition is comprised of a diverse group of partner organizations that support some of the communities most heavily affected by the HIV/AIDS epidemic today. Those organizations include American Academy of HIV Medicine, ACRIA, Gay Men’s Health Crisis (GMHC), HealthyWomen, National Black Leadership Commission on AIDS, and National Council on Aging.
In its first year, the Coalition created a call-to-action that envisioned the long-term future of HIV treatment, prevention, and care in the context of how the overall healthcare landscape may evolve over the next 20 years.
“As a member of the HIV: The Long View Coalition, we are proud to share stories through the Never Alone video series. It showcase how long-term HIV survivors are overcoming obstacles, facing their fears, and creating communities,” says Kelsey Louie, Chief Executive Officer of GMHC. “Through these stories, we hope to reach people who might feel isolated to remind them that, regardless of who they are, where they live, or what their HIV journeys have been, they are not alone. There is a whole community of people who understand, accept, and are there for them.”
The outlook for the future is looking better each day
With early detection, improved linkage to care, advances in treatment that can help individuals to achieve viral suppression, and adherence to that treatment, HIV can now be a long-term, manageable chronic disease. This is a big change from the early days of the epidemic. In those days, many people believed that a diagnosis of HIV was a “death sentence.” It is a sentiment echoed by all those who shared their stories as part of the Never Alone series.
According to the Centers for Disease Control and Prevention, people aged 50 and over account for an estimated 45 percent of Americans who have been diagnosed with HIV. At the end of 2014, an estimated 428,724 people aged 50 and over were living with diagnosed HIV in the United States.
Aging with HIV can present some unique challenges. People with HIV age 5-14 years faster than people without HIV. This may translate into earlier onset of some chronic conditions compared with those who are HIV negative. Age, HIV, and HIV treatment raise the risk of cardiovascular, kidney, and liver disease, as well as bone loss and certain cancers. As part of their stories, Michelle, Ed, and Kim each emphasized how important it has been to have a good relationship with their healthcare providers.
The first two videos featuring Michelle Lopez and Ed Shaw are available on the Coalition’s website at: hivthelongview.com/index.php/neveralone. For more information about the individual Coalition members, please visit:
American Academy of HIV Medicine: aahivm.org
Gay Men’s Health Crisis: gmhc.org
National Black Leadership Commission on AIDS: nblca.org
National Council on Aging: ncoa.org