Reflections on the Achieving Together Long-Term Survivors Webinar

On June 5, 2020, in celebration of Long-Term HIV Survivors Day, Texas HIV Syndicate member Barry Waller led a panel discussion with three long-term survivors here in Texas. Participants came from across the state and had a combined experience of 88 years of living with HIV: Gary Cooper, Austin; Glenda Small, San Antonio; and Steven Vargas, Houston.

When I tested positive for 1985, there were no services or treatments for HIV – only fear, government indifference, and the threat of being rounded up and quarantined. Friends were dying all around me, friends far more accomplished in life than I had been.

-Gary Cooper

Long-Term HIV Survivors Day, started by Tez Anderson of Let’s Kick ASS (AIDS Survivor Syndrome), in 2014 recognizes the resilience and strength of long-term survivors of HIV. Tez chose June 5 because it is the anniversary of the first reporting of cases by the CDC of what would later be known as AIDS.

Long-term HIV survivors are defined as those who have been living with HIV for more than 20 years. Currently, there are almost 19,500 Texans who have been living with HIV for more than 20 years.  These long-term survivors represent two out of every ten Texans living with HIV.

Hopefully we can get together and do this thing right and become as one and realize that everyone is a human being, and everybody deserves to live, and everybody deserves to have a chance.

-Glenda Small

We want to celebrate the long-term survivors currently living in Texas.  Long-term HIV survivors bring so many strengths with them to the fight to end HIV.  Many also face a number of unique challenges, including medical care, medication, housing, social isolation, and more. 

I had to do my part. I had to step up and use what I learned to help other people. And so I did.

-Steven Vargas

You can watch the webinar here and listen as these three individuals share their unique stories, perspectives, and wisdom:  

HIV Long-Term Survivors Awareness Day

Tez Anderson, the founder of Let’s Kick ASS (AIDS Survivor Syndrome), started HIV Long-Term Survivors Awareness Day to celebrate the strength, determination, and lives of people who have lived with HIV for 20, 30, or more years.  Many long-term survivors were part of the early days of activism and have roots in the development of the systems that work to prevent and treat HIV today. 

The first HIV Long-Term Survivors Awareness Day was June 5, 2014.  The date of June 5th was chosen because it is the anniversary of the first reporting of cases by the CDC of what would later be known as AIDS.

Long-term HIV survivors bring so many strengths with them to the fight to end HIV.  Many also face a number of unique challenges, including: medical care, medication, housing, and social isolation, and more. You can read more about aging with HIV in Barry Waller’s wonderfully-written previous post HIV and Aging.

This Friday June 5th, Achieving Together is honored to host, listen, and learn from a panel of long-term survivors here in Texas moderated by Barry Waller. Please see the information below on the webinar and read the panelists and host’s bios.

Friday June 5th, 2020

11am-12:30pm CST

Log in at: Achieving Together Conversation Series: HIV Long Term Survivors Awareness Day

You do not need to download any additional software as the platform (GoToMeeting) will run in your web browser.

Or by phone at: (872) 240-3311     Access Code: 160-952-933

Host:

Barry Waller, Austin, Texas

For over 36 years, Barry Waller has worked in the mental health, intellectual disabilities, physical disabilities, and aging fields at both the community and state agency levels in various administrative and management positions. He has a Master’s Degree in Social Work. As the Texas Legislature combined various state agencies, Barry went to work at the Department of Aging and Disability Services (DADS) as Assistant Commissioner over Provider Services. In this position, he managed directly administered services and various contracts with several thousand providers of disability and/or aging services throughout Texas.

Now retired, Barry spends his time working with different community and volunteer organizations. He served for nine years on the Board of Directors at AIDS Services of Austin, where he still remains as a volunteer. He has also served twice on the Board of Directors for OutYouth Austin and currently serves on the HIV Planning Council, a workgroup at the City of Austin on the City’s Age-Friendly Plan, and the Steering Committee of the LGBT Coalition on Aging.

Panelists:

Gary Cooper, Austin

I had just arrived back in Texas and started life with a new partner in 1985 when I tested positive and learned that my t-cells were already depleted; my new partner tested negative, and opted to stay together (we still are.) As the crisis worsened—most of our friends died—I struggled to continue professional employment, hiding my status and coping with several relocations as my partner’s career progressed. Although I’d never been involved in community volunteer work, I threw myself into helping to create the response to AIDS in Little Rock and later St. Louis, continuing my involvement in Austin as a board member of AIDS Services of Austin in the early 2000’s. Once I had gone on disability in 1993 after hospitalization with complications, I no longer tried to conceal my status and continue to make myself available to local media as a long-term survivor (most recently in a Statesman/USA Today article on lessons learned from the AIDS epidemic that apply to our current pandemic).

Glenda Small, San Antonio

I am 63 years old, originally from New Orleans, Louisiana. I relocated to San Antonio because of Hurricane Katrina in 2005, and I decided to make San Antonio my home because I didn’t want to go back & start all over again. I have been HIV+ for 28 years, I have been on the Executive Board of Director’s for B.E.A.T. Coalition Trust for over 10 years; I have been on the Executive Board of P.E.E.R.S. for women (a support group for Women infected & affected by HIV/AIDS) for about 9 years; I’ve served 2 terms on the Ryan White planning Council here in San Antonio; I am on the End Stigma End HIV/AIDS Alliance known as ESEHA; I am a member of the peer mentoring advocacy group here in San Antonio; I was inducted in to Sister Love the Leading Women Society, also the Black Women’s Initiative for San Antonio, and two years ago I received an award from the Top Ladies of Distinction for Hidden Heroes!

Steven Vargas, Houston

Steven began helping people living with HIV in 1989, has been living with HIV since 1995, and was recognized as one of Poz Magazine’s “100 Long Term Survivors” in its annual “Top 100” December 2015 issue. Steven is a board member of Houston’s OH Project which preserves the experiences of Houstonians impacted by HIV, and is serving a four-year term as a Community Member representative to the U.S. Department of Health and Human Services Panel on Antiretroviral Guidelines for Adults and Adolescents. He also serves as a Trainer for NMAC’s Building Leaders of Color program and as a consultant with Project CHATT (Comprehensive HIV/AIDS Training and Technical Assistance), which provides technical assistance to Ryan White planning bodies in reaching their legislative requirements. He is also the Community Co-Chair of Houston’s HIV Prevention Community Planning Group (2020-2021), and serves on the local Ryan White Planning Council as the Co-Chair of the Comprehensive HIV Planning Committee. 

Sexual Assault Awareness Month

At Achieving Together, we believe that everyone has the right to a happy, healthy sex life. Consent plays a vital role in this. Without consent, people are robbed of the right to decide how their bodies are treated.

April is Sexual Assault Awareness Month (SAAM). While SAAM helps raise public awareness about sexual harassment, assault, and abuse, the ultimate goal is prevention. This year’s campaign – “I ask” – shares the message that asking for consent is a normal and necessary part of sex.

In the midst of a public crisis, support for survivors is more important than ever. Here are six ways you can support survivors online during SAAM.

When sexual assaults do occur, organizations like SAFE in Austin help survivors heal emotionally and physically. If HIV transmission is a concern, PEP, or Post-Exposure Prophylaxis, is available to decrease the risk of contracting HIV. The post below describes the role of the Eloise House and the Kind Clinic in caring for an individual in the aftermath of a sexual assault. This post originally appeared on SAFE’s website and is being re-posted with permission.

If you need help related to sexual assault, call the National Sexual Assault telephone hotline 800.656.HOPE (4673) to be connected with a trained staff member from a sexual assault service provider in your area.

Providing holistic care and HIV prevention at Eloise House

Written by Piper Stege Nelson

For many survivors, the decision to come to SAFE’s Eloise House after a sexual assault does not mean they have decided to report the crime or file charges. Frequently the decision to visit with a nurse and advocate at Eloise House is about healing – both their hearts and their bodies.

When Connell was sexually assaulted by his co-worker, he was in shock. His emotions ranged from shame to rage to extreme fear. He arrived at SAFE’s Eloise House forensic clinic for a forensic exam after being bounced around to two different hospitals. When Julia, a SAFE forensic nurse, introduced herself to Connell, he said he was very concerned about HIV.

Sexually transmitted diseases, and particularly HIV, are great concerns for survivors of sexual assault since they can be spread through blood, semen, and vaginal fluids. HIV causes an infection in the body, the most advanced stage of which is AIDS (Acquired Immune Deficiency Syndrome). It turns out that the odds of contracting HIV post-assault are very low; for vaginal penetration without a condom, the rate is less than 2%.

At Eloise House, the forensic nurses assess survivors for HIV risk during the medical exam, and, if the nurse believes there may be risk for HIV, they will call for a consult. One option for those at risk of having contracted HIV is PEP, or Post-Exposure Prophylaxis, which is not a treatment but decreases the risk of contracting HIV. PEP must be started within 72 hours of the sexual assault, just 1-2 pills a day for a month, and is completely free at The KIND Clinic, AIDS Services of Austin, or Seton’s outpatient pharmacy. While the downside of PEP is that there are side effects during the 28-30 day regimen, including nausea and diarrhea, the upside is that PEP vastly decreases the risk of contracting HIV.

Being presented with options for how to take care of their bodies can be a huge sense of relief for survivors of sexual assault.

After talking with Connell, Julia discussed HIV post exposure prophylaxis and told him about his options. Due to the 72-hour window to start HIV PEP and the patient’s priority of starting the medication as soon as possible, Julia contacted KIND Clinic. The nurse practitioner at the KIND Clinic was incredibly helpful and able to get the patient in right away. Julia waited for Connell to go to the KIND Clinic and get medication.

Upon returning to Eloise House to complete the forensic exam, Connell felt much more at ease. He said the staff at the KIND Clinic got him in right away and were so friendly and helpful. Connell and Julia completed the exam at Eloise House and he left feeling more in control and supported.

Connell was able to get all the medical and emotional care he needed after a sexual assault, which in turn allowed him to begin the process of healing.


To find out more about Post-Exposure Prophylaxis (PEP) check out AIDS INFO Post-Exposure Prophylaxis overview

Your health care provider or an emergency room doctor can also prescribe PEP. Talk to them right away if you think you’ve recently been exposed to HIV.

Many HIV organizations prescribing PrEP can also provide PEP.  To find out if your local HIV organization provides PEP check the list of organizations across Texas at the Texas DSHS PrEP Provider directory.

International Transgender Day of Visibility

The International Transgender Day of Visibility (TDOV) is an annual holiday celebrated around the world. This day is dedicated to celebrating the accomplishments of transgender and gender non-conforming people, while raising awareness of the work that is still needed to save trans lives. We were inspired by this great list of 10 Things You Can Do for Transgender Day of Visibility compiled by the Trans Student Education Resources group and wanted to add some Texas specific things you can do to lift up and support trans voices today!

Continue reading “International Transgender Day of Visibility”