Long-Term Survivors Awareness Day: 40 year anniversary of HIV

June 5th marked the 40 year anniversary of the first official reporting, in the CDC’s Morbidity and Mortality Weekly Report (MMWR), of cases that would later become known as Acquired Immune Deficiency Syndrome and HIV.  The anniversary is also HIV Long-Term Survivors Awareness Day, honoring those that have lived with HIV for 25 or more years and raising awareness of their needs, issues, and experiences.  It is also an opportunity to reflect on the past 40 years of HIV and the impact it has had on so many communities. 

In Texas, there are 9,580 people who have been living with HIV for 25 or more years.  Last year, Achieving Together was honored to host a webinar featuring a panel of incredible individuals, highlighting the experiences and journeys of long-term survivors from Texas.  We encourage you to revisit the webinar and hear from these wonderful community members as you reflect on this anniversary and honor HIV Long-Term Survivors Awareness Day.

To learn more about the history of HIV check out this short informative video covering the last 40 years.

We also encourage you to visit the National AIDS Memorial to view the virtual AIDS Memorial Quilt and see their 40 Years 40 Stories page where they have begun to share the stories and experiences of people living with HIV.

Resource Spotlight: Center for Innovation and Engagement Website

At Achieving Together, we recognize that increasing medication adherence and retention in care among people living with HIV is a necessary component of ending the HIV epidemic. Here in Texas, 70% of people living with HIV were retained in treatment and care in 2019. Of those retained in care in 2019, 86% achieved viral suppression. Under the Achieving Together Plan, Texas’ goals by 2030 are for 90% of people living with HIV to be retained in care and treatment and for 90% of those retained in care to achieve viral suppression.  Given this is where Texas sits in the HIV epidemic, Achieving Together encourages HIV providers, community organizations and institutions to look for resources which support capacity building activities across the HIV continuum. One such resource is the Center for Innovation and Engagement (CIE).

NASTAD recently launched a new resource to help HIV providers address concerns related to retention in care. The Center for Innovation and Engagement (CIE) website, which is supported by the HRSA HAB Special Projects of National Significance (SPNS) Branch, shares innovative, evidence-informed interventions that support linkage, re-engagement, and retention in care to help end the HIV epidemic. Watch this welcome video to learn more about the project’s goals:

Here’s how NASTAD describes the website:

“CIE serves as a culmination of the collaboration between NASTAD, Northwestern University, Howard Brown Health Center, and Impact Marketing + Communications to identify some of the most effective evidence-based and evidence-informed interventions available and transform them into actionable tools, innovative frameworks, and adaptable resources. Our website showcases a myriad of innovative intervention how-to-guides that are “ready to replicate,” our process for selecting innovative approaches, and much more!

An example intervention that is available now is the Bilingual/Bicultural Care Team intervention. This intervention provides an opportunity to engage and retain Hispanic/Latinx adults with HIV by offering culturally and linguistically appropriate care services, leading to improved retention in HIV care and viral suppression. The intervention was modeled after a program developed by the Truman Medical Center (TMC) in Kansas City, Missouri during the years of 2005-2006. TMC experienced a significant increase in clients scheduling and keeping appointments, from a mean of 2.81 to 5.30 visits per year. The viral suppression rate among clients who met the criteria for ARV therapy increased by 31.5 percent.”

To support the real-world replication of the cataloged interventions, CIE provides steps for implementation and resources such as, but not limited to, replication tips, job aids, a cost calculator, and technical assistance.

Have you explored this website yet? Did it help generate any new ideas? Tell us about it!

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