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.
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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.
- 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
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