Linda-Gail Bekker, director of the Desmond Tutu HIV Center based in Cape Town, South Africa, provided an excellent overview of some of the challenges facing people aging with HIV. Bekker explained that aging with and living long with HIV is made up of three distinct groups: “Individuals who are exposed to ART, over a long period of time, [including] adults diagnosed in the last thirty-odd years who are still alive today…because of early ART and careful care; adults who due to good control or recent diagnosis are now requiring ART; and adolescents, finally, who were diagnosed in childhood or adolescence.”

With HIV now having moved into an era as a chronic, treatable condition, Bekker says we are, in some ways, victims of our own success. “People are now living with HIV long, and they need certain special considerations,” with some who have had HIV for a long time experiencing accelerated aging, geriatric syndromes and frailty, and chronic exposure to antiretrovirals that may have some impact. “Higher rates of comorbidities, the socio-economic challenges that go often with individuals who find themselves in tricky situations, and the loss of support structures including family and friends, all having an impact on mental health, mental well-being, and social support.”

A geriatric syndrome is a variety of conditions that predict adverse clinical outcomes, says Bekker. “They may include falls, urinary incontinence, difficulty with activities of daily living, slow gait, sensory deficits such as hearing or sight loss, and neurocognitive impairment. There was a high incidence of geriatric syndromes in people living with HIV who are older than 50. And people living with HIV susceptible to frailty occurs at younger ages. The risk factors for this include low current and nadir CD4s, other comorbidities, obesity, and social factors, and the strategies to prevent these syndromes [are] early treatment, identifying and treating comorbidities, and insisting on some form of exercise.”

The challenges across the board are physical, internal, stigma, and a sense of loss—a shrinking kind of life.

Bekker put forward some key management considerations. “It is advisable to think HIV, and offer testing, in people over 50—immediate antiretroviral therapy following diagnosis is important to these individuals, and missing a diagnosis could have severe impact.

Also remember adolescents may have slipped through childhood diagnoses, and where there is a sense that an HIV test should be done, then we should go ahead and offer one. Offer ART that takes into consideration other comorbidities and also the potential for drug-drug interactions; be wary of treatment fatigue, especially in adolescents. Screen for comorbidities and treat appropriately; avoid polypharmacy and simplify medication when possible. Always think about mental health considerations and maybe well-being; and recognize life events and offer opportunities and referrals for social support.

Quality of life is a key critical consideration, says Bekker. “You need to be thinking of these individuals’ physical disabilities and morbidities, but at the same time their psychiatric illness, the possibility of a loss of partners and friends. With that social isolation and stigma and social stressors such as unemployment and poverty, all of these leading to reduced quality of life and health span, and the challenges really across the board are physical, internal, stigma, and a sense of loss—a shrinking kind of life.”

Bekker also spoke about adolescents living long with HIV. “They need to either continue in pediatric services with inherent complications and confusion, or get them transferred to adult service; so what we’re talking about is health care transition. This often is a problem for young adults and teenagers. We know that they struggle with adherence to appointments, and to medication.”

In a Canadian study of 360 patients with congenital heart disease ages 19 to 21, “attendance as an adult at an adult clinic resulted in a 47% successful transfer. So, this is often dependent on documents, recommendation, and people introducing patients into the adult clinic and enabling self-reliant behaviors. Healthcare transition after all is the purposeful planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems. In my experience it’s discussed frequently, but studied very rarely, and the barriers to successful healthcare transition often sit within the health system with an inherent inertia. The pediatric provider won’t let go, or [the adult] won’t be released; the adult provider lacks expertise, feels this will be extra demand on time and resources; and the patient and the family or caregiver feels abandoned, they feel anxiety and loss of control.”

Healthcare transition is often not done well at all, says Bekker. In a study of more than 4,000 adolescents, “50% had discussed transition, 30% had a plan, but only 16% had a comprehensive plan that resulted with a good relationship and a great number of needed services to a successful transition.”

Bekker concluded by stating that it’s “most important to emphasize the need for differentiated service delivery for folks who live long with HIV, whether they are getting older, or whether they are adolescents transitioning into adulthood. They deserve our differentiated care, our tailored care, our comprehensive care.”