June 5 is HIV Long-Term Survivors Day

Every year people come together to celebrate and honor the Long-Term Survivors of the HIV/AIDS epidemic by elevating the profile of HIV Long-Term Survivors—our needs, issues, and journeys.

Our theme for 2018 “It is Still Not Over” #ItIsStillNotOver. Because we are talking about “ending AIDS.” But the reality is there are many of still living with HIV and HIV and have been for decades.

We chose June 5 to commemorate the day, in 1981, the CDC first announced the mysterious illness that was killing young gay men. It was called the Gay Cancer but was the beginning of HIV/AIDS awareness before it was known as HIV/AIDS.

We celebrate those who have defied the odds by living with HIV for decades. June 5 is about coming together and realizing that we are not alone. It is a national day of storytelling. We want to collect the stories of our lives, resilience, and our survival.

With courage and compassion, we survived the darkest days of the plague. Without access to effective treatments, we were forced to rely on each other and ourselves. As individuals and community, we exhibited strength we didn’t know we had. Now we face the conundrums of aging with HIV.

HIV Long-Term Survivors Awareness day is about celebrating our survival and looking forward to envisioning and create the lives we never imagined we’d live.

We want to change the narrative from surviving to thriving and Healthy Aging with HIV. Long-term survival, once an almost unimaginable concept is now the norm—something that was unimaginable before 1996.

Today 59% of all people living with HIV in the US are over 50. By 2020 that will increase to 70 percent. The new face of HIV is aging. Our focus is on ensuring that HIV Long-Term Survivors are front and center in the current HIV dialogue.

HIV Long-Term Survivors Age Differently

HIV and Aging are not a monolith. Pre-HAART survivors and Post-HAART survivors are separate cohorts with overlapping but different medical and psychosocial needs. The significant differences are longest term-survivors may have multidrug-resistant, resulting in limited treatment options (known as salvage therapy) and physical damage from long-term HIV infection.

They are also very likely to have taken earlier, less effective medications, which caused things like neuropathy and cardiovascular disease. Multimorbidities and comorbidities result in polypharmacy that impacts treatment adherence and optimal care. In short, HLTS require more specialized care. Aging with HIV is very complicated and needs innovative treatments, research, and programs focused on an older population.

We’re the generation who were told to plan to die young. By the end of that year, in the U.S. we witnessed the deaths of 362,004 of our loved ones and community. 6.4 million people had died from AIDS worldwide.

There’s a meme that ” we lost an entire generation. ” While we did a lot of our generation there are by recent estimates, 30% of Longest-Term Survivors are alive now.

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

Spread the word about HIV long-term survivors awareness day

#HIVResilient #HLTSAD2017 #LongTermSurvivors

Twitter @HIVSurvivors

MMRW 1981

Why June 5?

On June 5, 1981, the US Centers for Disease Control and Prevention (CDC) publish a Morbidity and Mortality Weekly Report (MMWR), describing cases of a rare lung infection in five young, previously healthy, gay men in Los Angeles it also notes that two men had died from their illness. This announcement marks the first official reporting of what will become known as the AIDS epidemic. That piece prompted newspapers in San Francisco and New York.

June 5th, 1981 was the beginning of HIV/AIDS Awareness before it had a name.


Reported by MS Gottlieb, MD, HM Schanker, MD, PT Fan, MD, A Saxon, MD, JD Weisman, DO, Div of Clinical Immunology-Allergy; Dept of Medicine, UCLA School of Medicine; I Pozalski, MD, Cedars-Mt. Siani Hospital, Los Angeles; Field services Div, Epidemiology Program Office, CDC.

Read Our Long-Term Survivors Declaration : A Vision For Our Future

The HIV Long-Term Survivors Declaration: A Vision For Our Future has been read or downloaded over 34,000 times! It's used to spark discussions among survivors and groups, health departments and agencies. It's making an impact.

Click here to download it.

A Day To Call Our Own

Why another HIV awareness day? Read Tez Anderson's article on POZ.com about why it matters...