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The Long and Winding Road: Growing Older with HIV

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It is estimated that by 2015, over half of all people living with HIV will be age 50 or older.

2011 -- a new decade and baby boomers across the country are turning 65. The generation that once vowed to remain young forever now complains, "Aging just snuck up on me." Like Matt Sharp, who, when he received his HIV-positive diagnosis over 20 years ago, didn't expect to reach the age of 40, much less 50. Now managing his disease is one of the many aspects of mid life -- he is a passionate activist for the prevention and eradication of HIV working with Project Inform in San Francisco -- but his work was recently interrupted with a bout of pneumonia, unusual for a man in his 50's, not unusual when you are HIV positive.

Helena Bushong, is a transgender activist in her 50's living in Chicago. "When I was diagnosed it totally knocked me over. It took me years to get my feet firmly on the ground. I looked at myself and asked 'What am I doing? I'm living a life I don't like, in a body that feels wrong and I don't have a long time to live' so I decided to finally take the leap and transition -- it's been a hard row."

Diane Divries, 78 lives in Oakland. She was first diagnosed HIV positive when her husband was hospitalized and they learned he had AIDS. "I was stunned. I had no idea -- we'd been married for years. For the first years after I was diagnosed, I took care of him. He was very sick. I'd been a good wife and I was there for him. When he died I realized I hadn't taken care of my self... The confusion is the biggest challenge. I'm getting older and when I go to the doctor with a complaint we ask each other 'is it the HIV?' The answer from both of us is I don't know. "

The HIV/AIDS epidemic that began in the 1980s -- and persists today -- is no longer characterized by overwhelming panic and a certain future of suffering and death. Matt, Helena and Diane's are three of many stories of survival. The development of effective antiretroviral therapy (ART) in the 1990s changed what it meant to be diagnosed as HIV-positive, making it possible for people to not only live with HIV but thrive well into their 50s, 60s and beyond. The number of adults over 50 living with HIV is growing rapidly, due to longer life expectancies and to new HIV diagnoses in older adults. It is estimated that by 2015, over half of all people living with HIV will be age 50 or older.

These new figures released in a report from New York's GMHC (Gay Men's Health Crisis), "Growing Older with the Epidemic: HIV and Aging," are both inspiring, and disconcerting. On turning 50, Matt said, " I'm lucky to have survived AIDS for 20 years, but I face the unknowns of a longer life with a virus that still smolders within my aging body and immune system."

Aging with HIV is a phenomenon rife with unknowns. In order to provide effective treatment and support, our strained health and human service systems need answers. What is the ultimate effect of years or even decades of ART on bodies and lives? How does living with HIV impact the general physical and social effects of aging, and vice versa? How should we create and deliver health and social services, shape and regulate elder care, and train caregivers and social service professionals to best serve older adults with HIV?

The specific demographics and characteristics of people living with HIV and AIDS deepen the challenge, as striking disparities exist: Among people who are 50 or older nationally, African Americans are 12 times as likely as their white peers to have HIV and Latinos are five times as likely. Cultural issues often present obstacles to testing, treatment, and care.

Some issues of aging with HIV are common to those of any chronic condition or late-in-life illness. However, the decreased immune systems of older people with HIV put them at greater risk for serious infection and slow recovery, and they are more likely to have non-AIDS-related illnesses such as heart disease, cancer, liver disease, and cognitive impairment and depression. These require patients already on a "strict schedule of popping HIV meds," to take other medications, which complicate treatment adherence, drug interactions, and clinical research.

Medicare, Medicaid, and Social Security provide crucial supports for older adults with HIV, but coverage gaps and loopholes abound and eligibility requirements are strict and confusing. Older people need help not only navigating these programs but also understanding the ways in which accessing specifically HIV-related benefits, such as those available under the Ryan White CARE Act, can hurt or help their ability to access other benefits.

Growing numbers of HIV-positive older adults will need assisted living environments, nursing homes, and hospice care. HIV care cannot be "mainstreamed" into primary care, but staff at these facilities often has no formal training in the physiological and psychosocial needs of elders with HIV. Primary caregivers for older people with HIV or AIDS are often same-sex spouses or domestic partners, who have difficulty obtaining important benefits, maintaining job security, and finding social support due to anti-HIV stigma.

Prejudice and discrimination against those perceived to have HIV and AIDS persist, and age-related stigma runs deep. Such double stigma can lead to dangerous social isolation; without social support, older adults are more susceptible to depression, poor mental health, and substance abuse.

GMHC and a host of community organizations across the country work to show older people with HIV that they are not alone. But this is not enough. As the number of baby boomers entering their senior years increase, we need to acknowledge the HIV-positive individuals among us, celebrate their survival and bring them into our plans for addressing the aging of our society.

For more information, please visit www.gmhc.org.

GMHC is a not-for-profit, volunteer-supported and community-based organization committed to national leadership in the fight against AIDS. We provide prevention and care services to men, women and families that are living with, or affected by, HIV/AIDS in New York City. We advocate for scientific, evidence-based public health solutions for hundreds of thousands worldwide.