AIDS At 35 Time to Do More for Those Living Longest with HIV

AIDS At 35, Time to Do More for Those Living Longest with HIV.

This year’s theme “Moving Forward Together,” celebrates those who have defied the odds by living with HIV for decades and now face a myriad of interconnected mental, social and medical challenges rooted in HIV-stigma, aging, ageism, and economic distress that impacts functional health-related quality of life issues.

Let’s Kick ASS the largest grassroots group of HIV long-term survivors anywhere began HIV Long-Term Survivors Awareness Day in 2014 because we were stunned no such day existed.

HIV Long-Term Survivors have different medical needs from other populations. Our social and mental health was not being a addressed. That was then. It’s on a little better now but no where good enough.

We’re asking for your help—survivors in raising awareness about these unique needs as we mark two significant milestones in 2016 –35 years since HIV was identified (June 5, 1981) and 20 years since Highly Active Antiretroviral Therapy (HAART) was introduced.

Long-term survival, once an almost unimaginable concept is now a reality. Let’s Kick ASS is focused is on ensuring that HIV Long-Term Survivors and Older Adults Living with HIV are not invisible and forgotten in the current HIV dialogue.

One thing is clear. We must make mental and social health a priority in AIDS Care. Our care is about more than medications and viral loads. It’s time to change the narrative from surviving to thriving. Achieving that goal mean equipping older adults with HIV tools for healthy aging. Here are some things we need to make Moving Forward Together Forward possible.

We are asking HIV long-term survivors, and those who support and love them, to commit to making these priorities. We want to enlist (nudge) AIDS Service Organizations, mental health and medical providers too.

Prioritize HIV and Aging Issues Through Awareness and Age Appropriate Services

The numbers demand it. Currently, over half of all people living with HIV are over the age of 50. By 2020 it is predicted to soar to 70 percent based on CDC data.

The new face of HIV is aging, yet we do not see our faces represented nor our most pressing issues and needs being addressed.

A shortage of appropriate anti-stigma and mental healthcare, no programs to alleviate poverty and lack of social outlets is contributing to declining health. These growing aging communities require urgent attention. People living with HIV over age 50 face unique and pronounced challenges.

New York City recently determined that 25% of New Yorkers living with HIV are Long-Term Survivors. That percentage may apply nationally, but we do not have those statistics yet. While we are talking about “Ending AIDS” we need to ask ourselves what about the survivors?

End Ongoing Systemic Institutional Invisibility of HIV Long-Term Survivors.

Most HIV/AIDS service organizations have designated programs for youth and are focused on PrEP. We’re all for those programs. One new HIV infection is one too many. But where are these programs, case managers and services for older adults? PrEP and PEP also ought to be accessible for older men and women who remarkably remain virus-free. That invisibility affects not only HIV Long-Term Survivors and older HIV+ folks, but those at risk of contracting HIV when they do not see themselves in health messaging campaigns and programs.

The National HIV/AIDS Strategy was recently updated to 2020 — without any mention of the intersection of Aging and HIV, much less anything addressing the unique medical and psychosocial needs of HIV Long-Term Survivors. It does not point out that the majority of people with HIV are over 50 and the numbers are rising.

Undetectable refers to our Viral Load—not to Us!

The Goal is Getting to Undetectable.

That means being in care and on treatment sufficient to maintaining an undetectable viral load. Beyond the life-saving benefits Treatment as prevention (TasP) is as effective as Pre-Exposure Prophylaxis (PrEP). Zero HIV Transmissions When Undetectable on Treatment doesn’t get the attention of PrEP but it vital to ending HIV.

Invest in community development to create a seat at the table for HIV Long-Term Survivors.

HIV Long-Term Survivors are the best resource for knowing what we need. Do not assume you know what we need. Ask us. We are the elders, leaders and teachers for our tribe.

We have a wealth of knowledge and depth of experience that are going to waste. We’re an untapped resource for HIV service organizations and the best partners in our healthcare. Make room at the table for all of us including the large number of women, people of color and trans people surviving HIV for decades. When we do not see our issues represented on websites and within organizations, it contributes to the belief that we are invisible and have been forgotten.

Isolation and loneliness are common among long-term survivors which impacts their wellbeing We need AIDS Service Organization to enlist Long-Term Survivors as partners in community development that fosters strength based healthy aging with HIV, independent living.

Ongoing social, behavioral and mental issues as well as isolation require unique and innovative solutions and the dedicated resources to build/rebuild strong social supports. Social support is vital to healthy aging.

Poverty and Disability Are Barriers to Healthy Aging and Living Well.

Large numbers of HIV Long-Term Survivors face financial difficulty because they are likely to have been on disability for decades. Many survivors live on below poverty level incomes. This has huge implications. We need innovate programs that raises the incomes of HIV Long-Term Survivors. Those living in large urban areas have unstable housing. Housing is a healthcare issue. The current social security disability system is inadequate for most long-term survivors. We need to strengthen social security because many HIV Long-Term Survivors rely on it.

Understand, HIV Long-Term Survivors Age Differently. HIV and Aging is Not a Monolith.

A case can be made that Pre-HAART survivors and Post-HAART survivors are separate cohorts with overlapping but different medical and psychosocial needs. HIV Long-Term Survivors may have multiple drug resistance 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, that caused things like neuropathy and cardiovascular disease. Multimorbidities result in polypharmacy that impacts treatment adherence and optimal care. In short, HIV Long-Term Survivors require more specialized care that is highly integrated. Aging with HIV is complicated and requires innovative treatment, research and programs focused on an older population.

AIDS Survivor Syndrome Impacts Long-Term Survivors Mental and Social Health.

Mental wellbeing, including social health, are as important as medications. The shortage of person-centered programs that are affordable, culturally-aware impacts linkage to care, viral suppression, healthy aging and prevention. It is urgent that we provide mental health services from professionals who understand our rich, complicated histories as well as the ramifications of sustained trauma and multiple losses. They routinely treated as less important or secondary. We need to insure that the peer-to-peer support services that have long been a staple of HIV stay focused to the changing realities of older individuals with HIV.

AIDS Survivor Syndrome (ASS) is best understood as a version of Complex Traumatic Stress. The first twenty years of the HIV/AIDS epidemic were traumatic, to say the least. HIV Long-Term Survivors are killing themselves because they do not understand what is happening to them. Mental healthcare professionals and peer-to-peer support need to understand that is not as simple “depression” or “survivor guilt”. It is not as simple as PTSD. They are signs of a larger psychosocial syndemic. It is a misunderstood complication that belies easy explanations or definitions.

ASS and Complex Traumatic Stress often go undiagnosed or misdiagnosed. It requires urgent specialized treatment. Long-Term Survivors are killing themselves because they do not understand the effects complex traumatic stress. I is one of the comorbidities no one ever mentions. ASS calls for Trauma Informed Care culturally sensitive to the experiences of Long-Term Survivors. It is critical that HIV Long-Term Survivors rebuild control and empowerment along with a sense of meaning and purpose.

Move Beyond Merely Surviving Toward a Thriving Mindset.

There is a fundamental difference between thriving and surviving. Surviving means, “to continue to live or exist,” while thriving means “to grow or develop well, to prosper or to flourish.” It is time to advance the conversation beyond survivorship and focus on a culture aging well with HIV. Beneath our losses, grief and trauma is a foundation of resilience and compassion. It is a testament of the human spirit, to individuals and communities who rolled up their sleeves and refused to accept our death sentences. The result of that resilience is we are living longer. Resiliency as more than merely bouncing back it is really about moving from a mindset of survival to truly thriving. The goal is to optimize survivors’ lives as we age.

If it is not obvious by now this is urgent!We do not have the luxury of time. We do not have time to wait around for adequate and culturally aware services sensitive to issues of aging with HIV. That means understanding the rich, complicated histories of HLTS and an awareness of how they are living and aging today.

#HIV #LongTermSurvivors  #ForwardTogether  #HLTSAD2016  #StillHere


Learn more about June 5 HIV Long-Term Survivors Awareness Day at and follow us in Twitter @HIVsurvivors

To learn more about the issues facing HIV Long-Term Survivor read Let’s Kick ASS’ HIV Long-Term Survivors Declaration: A Vision For Our Future.

It was published in September, has been read or downloaded over 21,000 times. You can download a copy here: or read it our new Medium publication


It is original writing by Tez Anderson and Let’s Kick ASS meant to empower and inform HIV Long-Term Survivors to move forward together. It is also useful to share with loved ones and doctors and psychotherapists, who probably unaware of these issues. And, honestly, many HIV/AIDS service organizations need to be up to speed on these issues.We are online at and our new Medium publication is (Yes .hiv is a new extension.)we’re on Twitter: @LetsKickASS_org, and

Building a Focus on Healthy Aging for Older Adults Living with HIV

Tez recently participated in a roundtable discussion with fellow HIV advocates and experts from around the country to discuss the unique needs of the aging population with HIV and what we can do to enhance and initiate efforts to promote healthy aging for those living with HIV. You can read and share the report here: