ThrHIVing: Strong, Resilient, Black Women Taking Action to End HIV & Mental Health Stigma

May is Mental Health Awareness Month, and to honor it, the Black Women’s Affinity Group, in collaboration with Achieving Together, is hosting a webinar to bust myths and offer support for women living with HIV. This webinar, entitled, “ThrHIVing: Strong, Resilient, Black Women Taking Action to End HIV and Mental Health Stigma” will take place on Monday, May 10th, at 11:00 a.m. Central Time both on Zoom and Facebook Live (through the Achieving Together Texas Facebook page). See the link at the bottom of the blog for registration details.

It is widely known that receiving a diagnosis for any disease can take an emotional toll on a person’s mental health; however, when that disease has stigma associated with it, the risk for mental health complications increases greatly. One study of over 2,800 individuals living with HIV showed that approximately 36% also experienced serious depression and almost 16% experienced increased anxiety.

In the creation of the Achieving Together Plan, community members decided that eliminating stigma by cultivating a stigma-free climate of appreciation and inclusion would be one of the six focus areas needed to have a high impact on the goals of the plan. The Black Women’s Affinity Group is working hard to eliminate the stigma associated with HIV in Texas, particularly among Black women. This group, in collaboration with Achieving Together, is composed of community members working to address disproportionate transmission rates,  health disparities for Black women, and  access to care. The focus of the Black Women’s Affinity Group is to address gaps in connecting with clients, providers, and community through culturally responsive and affirming messaging, provide culturally affirming and empowering self-care, and to ensure Black women are included as decision-makers in regard to prevention and care programming from a planning, financing, and implementation standpoint. 

As part of their work, the affinity group has hosted a series of Did You Know? webinars entitled, “DYK Dialogues.” Their upcoming webinar, facilitated by group member Mattyna L Stephens, features a number of speakers, including:

  • Shadawn McCants, CEO of Know and Live Counseling and Consulting, PLLC, (keynote address) Mental Health Professional and HIV Advocate
  • Sharonda Lynn,Community Advocate and Activist
  • Mia Porter, Community Advocate and Activist
  • Bonnie Samuel, Playwright/Poet

The webinar will address how Black women respond to and thrive with an HIV diagnosis while often confronting the associated fear, shame, and stigma they might experience. The webinar seeks to not only address these concerns, but also offer support and resources for navigating systems of care and accessing culturally-affirming mental health resources.

We asked the keynote speaker, Shadawn McCants, to share her thoughts on a few questions to give a preview of the wisdom she will be sharing on the webinar.

AT: What motivated you to get involved in mental health advocacy?

SM: My motivation was from my own experiences with mental health since childhood. Since the age of remembrance I have always stated I wanted to be a social worker. As I matured, attended college and began working in the arena of mental health it was inevitable that I would become an advocate due to the disparities and lack of access to culturally competent care for marginalized communities and individuals.

AT: What are some of the biggest challenges for Black Women accessing mental health services?

SM: One of the biggest challenges is the belief that Black Women are Super Heroes or invincible therefore they don’t need mental health treatment. Very often the assumption is that Black Women “got it.” The expectation of Black Women is to live up to the cliché Strong Black Woman…well that is a myth! Far too many Black Women have internalized this mantra. It halts their ability to ask for help when needed or results in their symptoms being ignored when brought to the attention of medical/clinical professionals.  Additional barriers include access to culturally competent professionals (i.e., Black therapist) and affordable services.

AT: Why is it important for people to understand the unique intersectionality of stigma, living with HIV, and mental health? How does the unique intersectionality of stigma, living with HIV, and mental health impact Black Women’s health outcomes?

SM: The intersectionality of stigma, living with HIV and mental health is impacted by the sheer fact that a diagnosis of HIV is PTSD! It is traumatic and requires a level of mental and emotional wellness from the moment an individual is given the (HIV) diagnosis. When stigma becomes internalized shame and is untreated, ignored, or violated by the systems that were built to protect them, it results in mistrust, disappointment and at worst a defeated mindset that may impact their desire and drive to get or stay in care.

Want to hear more from Shadawn and the other presenters? Join us and register here today (and make sure to share widely!)

HIV Medications: Past, Present & Future

Medications to prevent and treat HIV play a critical role in helping to end the HIV epidemic. Since HIV/AIDS emerged in the early 1980s, treatment options have evolved and improved. Let’s take a look at the progression of HIV medications over time, and consider what’s on the horizon.

1980s

The AIDS epidemic officially began in 1981. In June and July of that year, the CDC issued the first reports of fatal cases of Pneumocystis carinii pneumonia and Kaposi’s sarcoma among gay men. The New York Times was the first major news source to report on the epidemic, in a short article published on July 3, 1981.

Several years later, researchers discovered that a failed cancer drug from the 1960s, zidovudine, stopped HIV from multiplying and helped people with AIDS live longer. Also called azidothymidine (AZT), the medication was approved in 1987. Sold under the brand name Retrovir, AZT works by blocking proteins called enzymes that the virus needs to replicate itself.

The FDA approved AZT in less than 4 months, accelerating a process that usually takes many years. While it helped people with HIV live longer, AZT had a downside, including side effects such as liver problems and low blood cell counts. It was also extremely expensive. Over the next several years, the FDA approved other drugs that worked similarly to AZT. They belong to a drug class called nucleoside reverse transcriptase inhibitors (NRTIs).

1990s

By the early 1990s, HIV was the leading cause of death among Americans ages 25 to 44. A big issue with a single-drug treatment like AZT is that viruses can mutate over time, rendering medications ineffective. 

Until 1995, HIV doctors only had nucleoside reverse transcriptase inhibitors (NRTIs, nukes). This mono- and dual-drug era was one of high death rates and multiple complications.

The FDA approved saquinavir in 1995. This drug, which was the first in a new class of antiretrovirals called protease inhibitors, stops the virus from copying itself at a different stage during the infection.  The introduction of protease inhibitors to medical was revolutionary.  It resulted in suppression of HIV to undetectable levels.

A year later came yet another class of antiretrovirals, called non-nucleoside reverse transcriptase inhibitor (NNRTI). Like AZT, NNRTIs treat HIV by targeting the enzymes it needs to multiply.

These drugs launched a new period of combination therapy for HIV/AIDS. Doctors began prescribing saquinavir plus AZT or other antiretrovirals. This combination therapy was called “highly active antiretroviral therapy” or HAART. HAART lengthened the life span of people living with HIV/AIDS and became the recommended care for HIV in 1996.

Early clinical trials showed the ability of protease inhibitors as part of HAART to suppress HIV and increase CD4 counts. Later, studies reported a steep reduction in the death rate of people living with HIV.

HAART required taking many pills every day. A pill called Combivir was approved by the FDA in 1997. Because it combined two anti-HIV drugs, it was easier to take. Almost 20 years after the HIV/AIDS epidemic began, there were a dozen antiretroviral drugs available.

2000s

In 2007, the FDA approved the first integrase inhibitor, raltegravir (brand named Isentress). This type of drug offers a different way to stop HIV from replicating. More than 30 HIV medications are now available and many people are able to manage their HIV with one pill a day.

Another significant advancement came in 2010 when research revealed that taking antiretrovirals daily could also prevent people without HIV from contracting it. Truvada was approved as pre-exposure prophylaxis, or PrEP, in 2012. When taken every day, PrEP can lower the risk of HIV to almost zero.

2021

Cabenuva, the first long-acting injectable HIV treatment, was approved by the FDA in January of 2021. When using the new long-acting injectable, people living with HIV receive a monthly injection from a healthcare provider instead of taking a pill every day.

“Currently, the standard of care for patients with HIV includes patients taking daily pills to adequately manage their condition. This approval will allow some patients the option of receiving once-monthly injections in lieu of a daily oral treatment regimen,” said John Farley, M.D., M.P.H., director of the Office of Infectious Diseases in the FDA’s Center for Drug Evaluation and Research. “Having this treatment available for some patients provides an alternative for managing this chronic condition.”

What’s next?

Research continues on a twice-yearly injectable treatment for treatment-resistant patients. Gilead is expected to file for approval this year for their long-acting self-injectable HIV treatment lenacapavir. Gilead’s long-acting injectable only has to be injected once every six months. If approved, lenacapavir will be the first approved treatment of its kind and is meant for patients who have become resistant to multiple drugs, in combination with other treatments.

The question for a vaccine to prevent HIV continues. Despite progress in HIV treatment, the development of an effective HIV vaccine remains elusive. Janssen’s late-stage mosaic-based vaccine candidate is expected to see initial results from the phase 2b Imbokodo study as early as this year. As of July of last year, all 2,600 patients in the study have been fully vaccinated.

Sources:

https://www.webmd.com/hiv-aids/hiv-treatment-history

https://www.healthline.com/health-news/fda-approves-first-injectable-drug-regimen-for-adults-living-with-hiv#A-breakthrough

https://www.managedhealthcareexecutive.com/view/5-developments-to-watch-for-in-hiv-aids-treatment-and-prevention-in-2021

https://www.thebodypro.com/article/new-hiv-protease-inhibitors

Empowering & Assisting Homeless LGBTQ+ Youth in Texas

April 10 is National Youth HIV/AIDS Awareness Day. This is a day to educate the public about the impact of HIV and AIDS on young people. The day also highlights the HIV prevention, treatment, and care campaigns of young people in the U.S.

Here in Texas, several organizations work to support a particularly vulnerable population: homeless LBGTQ youth. One of these organizations is Thrive Youth Center, Inc. in San Antonio. Thrive was established as a 501(c)(3) in February of 2015, and their mission is to “provide a safe, effective, and supportive center for homeless LGBTQ youth, so they may become productive, skilled, educated, and successful adults with the ability, opportunity, and possibility of achieving their dreams.” Thrive’s emergency shelter, which is located on Haven for Hope’s campus, opened in 2015, and currently there are 10 beds for LGBTQ young adults ages 18-24. In addition to clients onsite in the shelter, Thrive received a federal grant in 2017 that allowed them to house 20 young adults in their own apartments with rental assistance for up to one year. Through its street outreach program, Thrive strives to get young adults off the streets and into shelter, either at Thrive or through another program.

Services provided by Thrive include:

  • Case management
  • Education services
  • Empowerment resources
  • Mental health services
  • Life skills
  • Medical care
  • Legal services
  • Aftercare support for residents after leaving Thrive

Thrive is one of only a handful LGBTQ-specific programs serving homeless youth in Texas. Others include the Dune LGBT Foundation in Dallas. Dune’s programs offer emergency housing resources, rapid rehousing programs, housing programs offer an expected stay of up to 6 months. Tony’s Place in Houston also works to empower homeless LGBTQ+ youth and helps them “survive on a day-to-day basis by providing services to meet their immediate, basic needs.”

While not a shelter, Out Youth, based in Austin, provides much needed services and care to LGBTQ youth. Out Youth has compiled several resources guides, which can be found here

Texas HIV Advocacy Day

Monday, March 29th is the Virtual HIV Advocacy Day at the Texas capitol.

The HIV community has a long-rooted history in public advocacy.  In truth, all advances in HIV treatment, including funding and medical advances, can be traced to community mobilizing to demand action.  One of the first, and best known, HIV advocacy and protests that began in the first decade of HIV is ACT UP.  Begun in 1987, ACT UP was created in response to the silence and inaction of the Reagan administration as the HIV epidemic ravaged communities across the country.

Early HIV advocacy, such work to draw attention to the need to develop and release treatments were successful in creating new fast track processes at the FDA.  These processes shortened approval processes to allow lifesaving medications to be released without protracted and often bureaucratic processes.  Today we can trace the rapid approval of COVID vaccines to the early days of HIV advocacy that resulted in new review and approval processes.

These early advocacy efforts also lead to the creation of the Ryan White CARE Act.  First passed in 1990, the Ryan White Care Act is the largest funder of HIV treatment in the United States.  In 2020, the Ryan White program provided $2.39 billion to support programs providing care and treatment to people living with HIV. 

More recently, the HIV community has led efforts to effectively end the HIV epidemic.  Communities across the country have worked to develop plans and lead efforts to stop the continued spread of HIV.  Here in Texas, community members have come together to develop the Achieving Together plan to lay a framework and vision for reducing the number of people who contract HIV annually and effectively end the HIV epidemic in our state by 2030.

Progress has been made but has now been heavily impacted by the COVID pandemic which has interrupted prevention programs, created barriers for HIV treatment programs, and has stretched local and state public health systems.  The COVID pandemic has threatened the safety net programs across the state, most notably the Texas HIV Medication Program.  Advocates from across the state have mobilized to address these challenges locally and at the state. 

The 2021 Texas HIV Advocacy Day is organized by multiple agencies and organizations to draw together community to ensure that the voices of people living with and affected by HIV are heard.  Advocates from across the state will gather on Monday, March 29th to meet with HIV change-makers and state policy makers to discuss some of the most important HIV legislation of the 2021 Texas legislative session, including HIV treatment and prevention, HIV education, HIV criminalization, and funding for the AIDS Drug Assistance Program (ADAP).

To learn more about the 2021 Texas HIV Advocacy Day and to get involved visit and register at:

Texas HIV Advocacy Day

Reflecting on the “NOTHING ABOUT US WITHOUT US IS FOR US” Webinar on National Women and Girls HIV/AIDS Awareness Day

March 10th is National Women and Girls HIV/AIDS Awareness Day, and we here at Achieving Together Texas would like to honor that day by reflecting on a recent webinar hosted by the Black Women’s Affinity Group of the Texas HIV Syndicate. Black women represent 10% of people living with HIV in Texas and represented 8% of all new HIV diagnoses in 2018 in Texas. The CDC provides an informative fact sheet as well about women living with HIV in the United States.

Since Black women are one of the five vulnerable populations disproportionately affected by HIV in Texas, the Black Women’s Affinity Group and the Texas Black Women’s Health Initiative work to address health issues affecting Black women in Texas. The affinity group recently kicked off a webinar series entitled, DYK (Did You Know?). As part of the series, they hosted a webinar on February 8th addressing medical mistrust in the Black community, medical research for HIV/Covid19 involving Black women, and how to identify “good” research. The webinar included a panel of experts who each presented on different topics. Presenters included:

  • Mandy Hill, DrPH, MPH, Director of Population Health and Associate Professor, The University of Texas Health Science Center at Houston’s McGovern Medical School & Delta Sigma Theta
  • Teriya Richmond, MD, Chief Medical Officer, AIDS Foundation Houston
  • Shanterra McBride, Alpha Kappa Alpha
  • Jennifer Jones, Zeta Phi Beta
  • Camille White, MD, Sigma Gamma Rho
  • Karen Shores, community advocate

The webinar included a mixture of presentations, interactive polls, and open discussions and prompted some great questions and responses from attendees. One organizer, Sattie Nyachwaya, a Community Engagement Coordinator with Prism Health North Texas, shared her thoughts on the webinar afterwards:

“Being a part of this webinar was a huge honor for me. Being in the space with some powerful Black women involved in this work for many years continues to inspire and motivate me in my long term personal and professional development. One of the things I took from this webinar was empowerment behind medical research. I was never aware that Black women are needed to be a part of medical research, and that we take back the power and break barriers by being active in our own health. I believe that mental health is a part of the foundation of Black women’s health, and by having open conversations with our providers and asking questions we make sure we are at the table with conversations of change. I learned that mistrust lives among misinformation, and it is so important in my own health to empower myself to ask and speak up.”

As part of the work of Achieving Together, the Black Women’s Affinity Group works to empower their community through social justice, education, and advocacy, while working towards the goal of eliminating health disparities and HIV in Black women and all Texans.

You can watch the entire webinar below: