Stigmas Impact on ART Medication Adherence among Young Transgender Women & HIV-Positive MSM

By: Ranier Simons, ADAP Blog Guest Contributor

One of the most essential tenets of antiretroviral therapy (ART) is adherence. Consistent administration of HIV medication is the route to well-controlled HIV disease and ultimately undetectable status. Lack of adherence prevents viral suppression, resulting in advanced disease states, can result in medication resistance, and contributes to transmission. A myriad of challenges causes key populations of people living with HIV/AIDS (PLWHA) to experience ineffective adherence. A recent report on a study conducted in several countries of Africa reveals a lack of adherence among key populations of young people due to intersectional stigma. 

Photo Source: UNESCO

The Health Economics and AIDS Research Division (HEARD) of the University of KwaZulu, Kamuzu University of Health Sciences in Malawi, the University of Zambia, and the University of Zimbabwe collaborated for a three-year research project to examine how various stigmas influence anti-retroviral therapy (ART) medication adherence in young transgender women and HIV-positive men who sex with men (MSM).[1] The study of 156 participants consisted of interviews and surveys. The purpose is to explore the experiences of intersectional stigma, develop a conceptual change model, design an intervention to improve ART adherence based on the model, and document results to create guidelines for improvement of the status quo in the South African Development Community Region.[1] Overall, fear of the study population’s HIV status being revealed and depression from dealing with the social stigma attached to their sexual and gender minority status results in poor medication adherence. 

Fear of discovery amidst the study population was nuanced. Some participants skipped doses of their medication because their living arrangements did not allow them privacy to take care of their health. They feared their medication being discovered in their belongings or being seen taking medication. Some of the participants lived in communities with social stigma of PLWHA. These young people feared their family or friends discovering their HIV status. Others feared discovery by their relationship partners. They feared their partners would desert them upon discovery of their status. In this case, skipping medication means poor health outcomes for themselves and possible transmission to their partners. Some participants even reported HIV stigma within the LGBTQ community, which they felt would make it harder for them to find partners.[1]

Others dealt with a different fear. Some of the participants lived in communities where there was increasing normalization of more acceptance of PLWHA. However, in these communities, there is still a negative stigma towards homosexuality, and in some cases, it is criminal. For the youth who were already known to be homosexual, they feared discovery of their HIV status because these communities saw it as a punishment for their sexuality. Thus, they skipped medication often or did not seek out regular treatment in medical facilities for fear of being treated poorly for being HIV positive and homosexual. 

For both the transgender women participants and the MSM, social stigma due to their sexual and gender identity caused mental health issues that contributed to a lack of treatment adherence.[1] They reported being looked upon with disdain and sometimes verbal or physical violence; navigating society as proverbial ‘black sheep’ caused depression and even suicidal ideation that made it challenging to be consistent with the self-care of ART adherence.[1,2] This was especially true for those who reported alcohol and substance abuse as a way of coping. It’s a well-documented fact that substance abuse results in poor medication adherence. 

Photo Source: The Lancet

The research project is ongoing and in the stages of synthesizing intervention concepts. The discussion of the data has spawned several priorities. One priority is finding safe avenues of adequate care regarding HIV treatment. There need to be safe spaces to receive care and medication. Additionally, mental health resources for these young people are required. It is imperative to create safe spaces to talk about what is going on in their lives and how to cope. They need mental health professionals as well as safe peer group spaces to interact and support each other. Researchers also emphasized the importance of including the experiences and perceptions of front-line healthcare providers. The study cannot change external factors such as cultural prejudices and unfair criminalization. However, creating safe healthcare pipelines and infrastructure for psycho-social support will hopefully improve ART adherence and quality of life for the young sexual and gender minorities of Zimbabwe, Zambia, and Malawi.

[1] SADC. (2023, April). Regional Symposium Report. Retrieved from https://www.heard.org.za/wp-content/uploads/2023/06/SADC-Symposium-Report_final.pdf

[2] Govender, K., Nyamaruze, P. (2023, September 25). Young people with sexual or gender diversity are at higher risk of stopping their HIV treatment, research finds. Retrieved from https://medicalxpress.com/news/2023-09-young-people-sexual-gender-diversity.html

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.   

PEPFAR for the Win!

By: Ranier Simons, ADAP Blog Guest Contributor

What happens when a country realizes the importance of global collaboration in the fight against HIV and AIDS? PEPFAR happens. PEPFAR is the acronym for President’s Emergency Plan for AIDS Relief. This year marks the 20th anniversary of the initiative, the largest commitment ever made by a country targeted at fighting a single disease. The George W. Bush Administration brought PEPFAR into existence via H.R. 1298, the United States Leadership Against HIV/AIDS, Tuberculosis, and Malaria Act of 2003.[1] PEPFAR was initially a five-year plan with Congress appropriating $15 billion to combat the HIV/AIDS epidemic globally.[2] Since its inception and three reauthorizations, the U.S. federal government has invested over $110 billion in PEPFAR.[3] 

Photo Source: HIV.gov

H.R 1298 created PEPFAR, defined its structure and funding, and created a new position of U.S. Global AIDS Coordinator at the Department of State, with the rank of Ambassador.[4] The legislation defines the duties of the Coordinator as to: “(1) operate internationally to carry out prevention, care, treatment, support, capacity development, and other activities for combating HIV/AIDS; and (2) provide grants to, and enter into contracts with, nongovernmental organizations, including faith-based and community-based organizations, to carry out such activities.”[1] PEPFAR funding also includes contributions to the Global Fund to Fight AIDS, Tuberculosis, and Malaria. Significant PEPFAR endeavors include expanding access to HIV treatment and prevention, strengthening health systems, and providing services to children with HIV/AIDS. Many of the children are vulnerable and orphaned. The initial motivation behind PEPFAR was the devastation President George W. Bush saw occurring with the HIV/AIDS epidemic in Africa.

Providing antiretroviral therapy (ART) is a strong focus of PEPFAR. As of 2022, 20 million patients in 54 countries have received PEPFAR-funded ART. This is a 300-fold increase from 66,500 people in 2004.[5] The initial goal was to treat 2 million people, prevent 7 million infections, and provide humane care. At PEPFAR’s inception, it was estimated that 30 million people in Africa were infected with HIV, but only 50,000 were on ART.[5] To date, it is estimated that over 25 million lives have been saved with ART, and millions of infections prevented. ART not only preserves the lives of those living with HIV but prevents its spread through sexual contact and mother-to-child transmission through birth. Of those on PEPFAR-funded ART, viral suppression has increased from 80% to 95%.

The positive outcomes of PEPAR are not just HIV related. Due to the initiatives, public health infrastructures have been created and strengthened. Thus, countries were better prepared to deal with labs and testing necessary for COVID-19. Additionally, H.R. 1298 contained provisions to help with debt cancellation and restructuring of underdeveloped, heavily indebted countries overburdened by the HIV/AIDS epidemic and other public health crises.[1] PEPFAR has been hailed as one of the greatest achievements of the Bush Administration.

Photo Source: The Borgen Project

Data shows that in 2021 approximately 38.4 million people were living with HIV, 28.7 million people were on treatment, 1.5 million became newly infected, and 40.1 million have died from  AIDS-related illnesses since the start of the epidemic.[6] The fight against HIV/AIDS is far from over. It is imperative that Congress reauthorizes PEPFAR. Is it up for its fourth reauthorization this year. If Congress does not reauthorize PEPFAR, funding for it will not end. However, not reauthorizing it would mean that specific key time-bound provisions would sunset. This could adversely affect the way funds are allocated, the way oversight is conducted, and even how studies concerning its effectiveness and outcomes are conducted, ultimately affecting the appropriation of funds.

[1] H.R.1298 - United States Leadership Against HIV/AIDS, Tuberculosis, and Malaria Act of 2003. Retrieved from https://www.congress.gov/bill/108th-congress/house-bill/1298

[2] Cohen, J (2023, March 14). On Its 20th Anniversary, Reflecting On PEPFAR’s Success In Saving Millions Of Lives In Developing Nations From The Scourge Of HIV/AIDS. Retrieved from https://www.forbes.com/sites/joshuacohen/2023/03/14/on-its-20th-anniversary-reflecting-on-pepfars-success-in-saving-millions-of-lives-in-developing-nations-from-the-scourge-of-hivaids/?sh=44e55f494873

[3] Kaiser Family Foundation. (2022, July 12). The U.S. President’s Emergency Plan for AIDS Relief (PEPFAR). Retrieved from https://www.kff.org/global-health-policy/fact-sheet/the-u-s-presidents-emergency-plan-for-aids-relief-pepfar/

[4] Moss, K., Kates, J. (2023, March 13). PEPFAR Reauthorization 2023: Key Issues. Retrieved from https://www.kff.org/policy-watch/pepfar-reauthorization-2023-key-issues/

[5] CDC. (2023, March 14). Vital Signs: Progress Toward Eliminating HIV as a Global Public Health Threat Through Scale-Up of Antiretroviral Therapy and Health System Strengthening Supported by the U.S. President’s Emergency Plan for AIDS Relief — Worldwide, 2004–2022. Retrieved from https://www.cdc.gov/mmwr/volumes/72/wr/mm7212e1.htm?s_cid=mm7212e1_w

[6] UNAIDS. (2023) Global HIV & AIDS statistics — Fact sheet. Retrieved from https://www.unaids.org/en/resources/fact-sheet

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.  

Helping Young Adults Living With HIV To Transition To Adult Care

By: Marcus J. Hopkins, Policy Consultant

Nearly forty years after the start of the HIV/AIDS epidemic, new and better treatment options have led to a number of changes in the how specific patient populations are managed. Over the past decade, increasing attention has been paid to the growing number of aging patients living with HIV – a prospect once thought unfathomable. Another patient population is also increasing – people born or infected with HIV as children who are becoming adults.

According to the most recent estimates, roughly 39,000 youths aged 13-24 were living with HIV in the U.S. in 2016, with approximately 9,000 new infections occurring in this age group in 2014. 80% of those youth were Men who have Sex with Men (MSM) – 55% Black, 23% Latino, and 16% White. These youths are more likely to have complex anti-retroviral therapy ("ART") regimens with underlying multidrug resistances and may face greater obstacles to achieving functional autonomy (Liggett, 2016).

This patient population may face more obstacles to obtaining and achieving adult care and treatment than adults who contract HIV later in life in no small part because those who contract the virus later in life may be better established as functionally autonomous adults. They are likelier to be living on their own and managing to support themselves when they become infected, whereas youths who are transitioning to adulthood, in addition to securing and maintaining HIV treatment and healthcare services, are going to be facing the additional hurdles that come with becoming an adult: becoming independent, finding employment, finding housing, living on their own. These transitions are difficult for all young adults; adding in the additional stress of living with a chronic illness such as HIV can easily hamper this transition.

Photo Source: Huffington Post

Depending upon their state of residence, young patients living with HIV may be engaged in care with pediatric or adolescent HIV/AIDS care providers. Over the course of their care, they may have formed close bonds with their providers, which can make transitioning over to adult care and self-sufficiency more difficult. Additionally, these patients may also have mental health problems or cognitive impairment, which can make adhering to medical care difficult (Tassiopoulos et al, 2019).

In order to ease the transition from pediatric/adolescent care into adult care while maintaining medication adherence and viral suppression, additional efforts should be provided to help these youths develop social connections and support networks outside of clinical settings, as well helping them develop skills to improve self-management of care.

The first part can be accomplished by introducing and/or linking young patients to local or online support groups and networks for youths living with HIV/AIDS. While the scientific evidence that these groups produce concrete positive results for patients is still developing, early reports indicate that patients who engage with and in in-person or online support groups may develop better social connections, have more positive feelings about their treatment and/or care, better engage in the continuum of care, be more adherent to medication regimens, and achieve and/or maintain viral suppression better than patients who do so without a firm support network in place.

The second part – developing skills to improve self-management – can be more difficult to fulfill, and in the inclusion of pediatric social workers may be beneficial in aiding this transition to adult care:

"When adult medical staff questioned patients about their unsuccessful transition, eight reasons were provided compared with 13 reasons when asked by a pediatric social worker: work (12%); transportation (11%); relocation, which resulted in exclusion from the study (9%); no phone access (9%); difficulty dealing with diagnosis (9%); no reported problems (9%); lost insurance (3%); mental health (3%); incarceration (3%); went to a drug treatment facility (3%); family issues (3%); and domestic violence (3%) (Bortz, 2018)."

Many of these issues are directly related to the patients’ ability to become self-sufficient and maintain self-sufficiency, a task difficult enough for every adolescent transitioning into adulthood, but made more complicated by the added pressure of managing HIV/AIDS. Social workers can help these young patients by linking them to social programs (if available) that can help them to receive assistance for phone service, transportation assistance, mental health services, domestic violence issues, and insurance coverage. There may also exist, in some communities, classes and programs that can help people learn to better manage their time, resources, and finances, which can help lead to better self-management of their HIV.

The Ryan White HIV/AIDS Program (RWHAP) served 23,540 youth and young adults aged 13-24, representing 4.4% of the total RWHAP client base (Health Resources and Services Administration (HRSA), 2019). Of these, roughly 780 have unstable housing conditions and 4,602 have no health care coverage (HRSA).

In my own visits to my HIV clinic, my Ryan White Case Manager always asks me if all my needs are being met, if my housing is secure, if I’m having trouble paying bills, or if I need assistance purchasing food. These resources are available through the various parts of the Ryan White Care Act (depending upon the patient’s location). Utilization of these services can help patients with their transition into adult care.

Because this population is relatively new (meaning, higher numbers within the past decade or so), it’s going to be as difficult to transition these patients into the appropriate care settings as it will be to help aging people living with HIV/AIDS to continue managing their disease as they encounter more geriatric conditions.  The Ryan White Program and ADAP, specifically, can serve a vital role in ensuring that these patients continue to have access to the medications and treatment they need to remain healthy at any stage of life.

References:

• Bortz, K. (2018, October 12). Pediatric social workers may be beneficial in transition to adult HIV care. Thorofare, NJ: Healio: Infectious Diseases in Children: Pediatrics: HIV/AIDS. Retrieved from: https://www.healio.com/pediatrics/hiv-aids/news/online/%7Babb84686-700f-4001-9dda-8b7c9e3a41d2%7D/pediatric-social-workers-may-be-beneficial-in-transition-to-adult-hiv-care

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.