Looking Forward

Many long-term survivors and their more recently diagnosed peers are struggling with the consequences of the current societal complacency about the AIDS epidemic here in the US. They find themselves without key sources of emotional and practical support as loved ones have succumbed to AIDS or, as with many older adults, their social networks have gotten smaller as they lose people to aging-related illnesses or relocation. Burdened with heavy case loads and insufficient resources, case workers do their best to help support their clients, but can’t really fill the shoes of the loved ones who so often act as health care advocates and provide much-needed day-to-day caregiving. All of us need to step in and do a little more.

The need to support those aging with HIV is not just a moral imperative: it is an opportunity for us to learn. Most HIV/AIDS research to date has focused on younger people and has excluded older individuals who are often living with multiple serious illnesses—which can include heart, kidney, liver, and bone disease, as well as dementia—leaving many questions about the simultaneous management of HIV and aging-related issues unanswered. Even when people respond well to the HAART medications, AIDS appears to accelerate the aging process, so that some people in their 50s living with HIV infection can experience illnesses we might not normally see in a person until their 70s or 80s.

We already know that the aging of the baby-boomer generation will put unprecedented strain on our health care infrastructure; the aging of AIDS will only compound these challenges. By working with older people with HIV we can provide much needed support today while gleaning critical insights for tomorrow.

In the coming years, we must expand clinical research to learn how medications used to treat HIV are or are not compatible with medications used to treat age-related illnesses and understand what the long-term effects of HIV medications—both on their own and in combination with other medications—might be. We must prepare our providers and medical and social service institutions for the wave that is coming, sensitizing gerontological specialists to HIV issues and HIV specialists to gerontological concerns. We must build inter-disciplinary collaborations and expand approaches to coordinating care for older adults living with an array of health concerns. When people are no longer able to live independently, we will need assisted living and nursing care facilities that are adequately trained, staffed, and equipped to support older people with AIDS. As many LGBT (lesbian, gay, bisexual and transgendered) elders can attest, a lack of awareness and sensitivity around issues of sexuality and gender identity on the part of both staff and residents can have significant psychological and physiological consequences. What will happen when HIV is increasingly added to the mix?

Throughout the history of the epidemic, patient activists have played a critical role in identifying key issues and pushing through obstacles to quality care. Providers and policy makers need to encourage continued engagement of patients, their families, and their communities as we tackle these new challenges: the graying of AIDS demands collaboration and partnership not just between different medical and social service specialists, but with patients themselves.