On HIV Long-Term Survivors Awareness Day, a Community Speaks Out

HIV Long-Term Survivors Awareness Day logo

June 5 marks the fourth annual observation of HIV Long-Term Survivors Awareness Day (HLTSAD), a grassroots effort to honor people who have been living with HIV for more than 10 years. The event also seeks to combat stigma and discrimination by educating the public about what it means to live -- and grow older -- with HIV today.

Here is a collection of HTLSAD statements and commemorations from people and organizations within the HIV community.

HIV Organization Statements

From a declaration issued by Let's Kick ASS, the founding organization of HLTSAD:

As individuals and community, we exhibited strengths we didn't know we had. Over time we've proven, we are resilient, and we are profoundly impacted by the aftermath of unparalleled survivorship. We come from diverse races and ethnic backgrounds, genders, incomes, ages, and physical abilities. ...

We strive not to survive merely, but to thrive in meaningful, productive, independent and connected lives free of stigma, ageism, and discrimination regardless of age, gender, race or ethnicity, sexual orientation, gender identity or socioeconomic circumstance. ...

Our continued marginalization exacts a toll our mental health, which in turn affects our overall physical health and quality of life. The White House updated the National HIV/AIDS Strategy for the U.S. in July 2015 with no mention of the experiences, or the lived reality of long-term survivors.

It's up to us to reclaim our silenced voices and ensure that long-term survivors' perspectives are factored into the talk about "the end of AIDS," "AIDS-free generation" and campaigns like Getting to Zero, it becomes vital that we take care of and acknowledge long-term survivors.

From director of the Office of HIV/AIDS and Infectious Disease Policy, U.S. Department of Health and Human Services, Richard Wolitski, Ph.D.:

We still have much to learn about the needs and experiences of long-term HIV survivors and to be prepared to care for the needs of an aging population of people living with HIV. I am glad that HIV Long-Term Survivors Day gives us a chance to talk about these experiences, to listen to those who are able and willing to tell their stories, to find some healing for ourselves, and to renew our national commitment to meeting the needs of long-term survivors. They are our witnesses to history, our warriors in the fight against HIV, and our heroes.

From Positive Lite founder Bob Leahy:

It seems odd for me, a white privileged gay male, to express feelings of disadvantage. But increasingly it's true. Maybe it's a healthy thing to experience disadvantage, to crave respect where it's lacking. It's a common thread within our community. But I kick back at it anyway. Increasingly I speak up for long-term survivors to be recognized as an important sub-group within our community, represented by no organization, their needs, while very specific lumped instead under the ubiquitous "HIV and Aging" umbrella.

Last year, my local AIDS Service Organization, didn't acknowledge Long-Term Survivors Day. Not that they were alone. Some argued it's a U.S. thing. They had a point, but I got annoyed with them anyway. We long-term survivors sometimes take things very personally. And yes, some of us are aging, some aged. That adds a litany of issues we deal with, one of which is crankiness.

Deep down I think we want to be acknowledged as special people who bring something of real value to the table. That seldom happens. Long-Term Survivors Day rights that wrong - but being a hero just once a year feels inappropriate.

From Positively Aware editor Jeff Berry:

What is it after all these years that makes us give up, and decide that life is no longer worth living? How can we reach out to each other to offer the support and guidance that's needed for so many HIV long-term survivors living in isolation, financial uncertainty, or mounting health issues? How do we create resilience, and teach that resilience to others. Is there such a thing as my friend Louis coined "resilience fatigue?"

... We always have an opportunity to reinvent our lives, and find a purpose for living, a reason to say, "I'm still here."

From A&U magazine:

Organizers hope that long-term survivors and their families and friends will share their stories through writing, photographs, and/or videos to celebrate the resilience of a long-battered community that has turned "surviving" into "thriving" despite incredible odds. Twitter users can follow HLTSAD at @HIVSurvivors; preferred hashtags for the commemoration are #HIVResilient, #HLTSAD2017, and #LongTermSurvivors. Facebook users can share their stories and images on the HIV Long Term Survivors Awareness Day page.

From the National AIDS Memorial:

From amfAR:

From The Well Project:

From RiseUpToHIV:

From Terrance Higgins Trust:

HIV Community Reactions

From speaker and activist Tez Anderson:

There's a meme that "we lost an entire generation." While we did lose a lot of our generation there are by recent estimates, 26% of Longest-Term Survivors alive now.

Let's celebrate, honor and appreciate that they still have years go and it is all our job to help them become the best they can be.

From Nashville Cares CEO Joe Interrante:

At this point in my life, I am grappling with issues that probably are more related to aging than HIV -- although HIV complicates things. I laughingly say that I'm spending more time with my rheumatologist and urologist than with my HIV doc. That's the nature of long-term survival. It still amazes me that I'm one of those folks who has been lucky enough to live this long with this disease

From author and activist Victoria Noe:

There are days when I don't have a fucking clue why I'm back. I don't know what I thought I'd be doing at this age, but it's not this. Thirty years ago I hoped all this shit would be over, but it's not.

At the closing of the 2015 U.S. Conference on AIDS, one of the ministers said something that raised goosebumps all over my body: "Sometimes we choose our calling, and sometimes our calling chooses us."

From Mark S. King:

From Bridging Access to Care:

From Josh Robbins:

From Dab Garner:

From Joe Mannetti:

From Alejandro Santiago:

Other Reactions and Analyses

From Mic.com:

Many long-term survivors live at a dangerous nexus. They face the general disregard with which society treats the elderly. Often, they have lost many close friends in the epidemic, and so endure debilitating loneliness and isolation. And they all face the complicated reality of growing older with HIV.

Some believe that these realities may become more debilitating under a Trump presidency.

"You can't live in a world with Trump and not be worried about your medical future," Sean McKenna, a 54-year-old long-term survivor, said in a phone interview.

Myles Helfand is the editorial director of TheBody.com and TheBodyPRO.com. Follow Myles on Twitter: @MylesatTheBody.

Ken Stockwell is senior web producer for TheBody.com and TheBodyPRO.com.