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Reality Demands Change

People Over Age 50 Living With HIV Continues to Increase

April-June 2007

A signal event in the history of the HIV/AIDS epidemic occurred in June 2007. The New York City Council passed a $1 million initiative to provide HIV education and prevention information to older adults. The leadership for this initiative came from council member Maria del Carmen Arroyo, chairwoman of the council's Committee on Aging. Key support for the initiative came from the prestigious and influential Council for Senior Center Services in New York City as well as many AIDS service organizations and agencies serving older adults. HIV is no longer an issue defined by HIV prevention messages that focus solely on the risky sexual behaviors of youths and young adults. GMHC's decision to devote this issue to matters of aging and HIV is in response to changed conditions and a recognition that nearly one third of all New Yorkers living with HIV are now aged 50 or older.

In New York City, the HIV/AIDS epicenter of the United States, 32% of the almost 100,000 people living with HIV are over age 50 and more than 70% over age 40. This is a result of antiretroviral drug treatment. It is probable that older adults will account for the majority of people with HIV within the next decade. Unfortunately, they face a health care system, social support networks, and communities ill-prepared to meet their needs. Quite simply -- who would have thought that people with HIV would live long lives? The need to suspend the disbelief that people can age with HIV is one hurdle. The challenge requires overcoming ageism and accepting the fact that HIV must take its place amid the panoply of illnesses that are associated with aging.

Research on Older Adults With HIV (ROAH)

In 2006, key findings of ROAH (Research on Older Adults with HIV) the nation's first comprehensive study addressing the aging HIV/AIDS population, conducted by the AIDS Community Research Initiative of America (ACRIA), was released. The study examined a New York City cohort of 1,000 people living with HIV. They represent the underserved, unacknowledged, yet substantial HIV-positive population of men and women of all sexual orientations and races in New York City who are growing old with this disease. ROAH looked both at their unique health needs, i.e., complications that arise from or are exacerbated by their age, and the complex psychological and social issues that affect these older adults.

Many see the face of AIDS belonging to a white, homosexual male -- the media archetype of the 1980s. Yet in New York City and other urban centers, the face of HIV/AIDS is that of a heterosexual-identified person over the age of 50 who is a person of color and increasingly likely to be female. Heterosexual sex is the fastest-growing mode of transmission, with 61% of people over 50 infected within the last five years citing this transmission mode -- nearly double the figure 10 years ago.

The Great Unknown: Health Complications of Aging With HIV

The primary reason for the growing number of people over 50 with HIV is the success of anti-HIV drugs. As people with HIV grow older, they face a host of health challenges that are common in older adults but will be compounded by HIV/AIDS. They are reaching a stage in life where they are prone to such age-related conditions as adult-onset diabetes, cardiovascular disease, osteoporosis, cancer, dementia, and mental illness. These are among the comorbidities of aging. Will these age-associated conditions manifest themselves earlier and with greater severity in this aging HIV population? What are the potential unwanted interactions between antiretroviral treatments and the complex treatment regimens used to treat these age-associated comorbidities?

As we age, immune system function declines. Illnesses are generally exacerbated by the body's weakened immune response, making older persons with HIV/AIDS more susceptible to serious complications. ROAH found that older adults living with HIV are more prone to depression. The ROAH study group reported having the following comorbidity rates: depression at 52%, arthritis and hepatitis at 31% each, neuropathy at 30%, and hypertension at 27%.

Psychosocial Implications of Aging With HIV

Aging well is not only a function of taking the right pills. The role of psychosocial issues as we grow older is paramount in achieving successful aging. The reliance on families, friends, and social service entities, often referred to as informal caregiving, is a critical element for this phase of one's life. These support networks are at best fragile for the aging HIV population. Stigma and social isolation, compounded by loneliness and depression, paint a bleak picture.

Studies like ROAH find that older adults living with HIV are marginalized (ageism) and neglected, creating a population of people over 50 who are living with this disease, yet who lack the social support systems they need and whose health care providers may be insensitive to their unique and changing needs. Feelings of shame lead to isolation and apprehension about seeking necessary care. These feelings also prevent individuals from revealing their condition to their families, with less than half of ROAH respondents reporting they had told their families of their diagnosis, and only 35% had told their friends.

Policy Examination Needed

It is vital that those who determine the priorities of funding streams for HIV/AIDS care and management consider the issue of aging and HIV as a significant factor and not an epiphenomenon. Limited research paints a stark picture of an aging population, living alone, lacking the social support others take for granted.

AIDS service organizations (ASOs) are not going to be able to retool themselves to address the massive demands that aging places on people. Those who provide health care to this population must increase their knowledge of age-related illnesses and be sensitive to potential complications due to HIV/AIDS and its treatment. Similarly, older adults with HIV must empower and educate themselves regarding aging issues and be prepared to engage their health providers with their needs and concerns. Older adults living with HIV must feel safe to engage the health and social support systems that every other aging person can access. Mainstreaming is needed. In that process stigma will be reduced.

The Final Challenge

Lastly, aging well is a function of the support of a person's community. How we care for each other as we age will ultimately define who we are. The need to reduce stigma is key in this process. HIV stigma, rooted in homophobia, pervades every niche in the lives of those living with HIV. This includes family, friends, health care providers, politicians, community leaders, people of faith, shopkeepers, neighbors, and more. In Africa, where HIV is devastating millions, the answer, as it does here, rests with communities of people.

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This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.
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