For many people, the concept of a National HIV/AIDS and Aging Awareness Day seems like an oxymoron. Back in the 1980s and ’90s, a diagnosis of HIV did not portend a life of hope and promise, let alone aging with dignity and grace.
An HIV-positive diagnosis in those early days of the epidemic was quite literally a death sentence for hundreds of people in Maine and hundreds of thousands across the nation. The science of the day did not include the life-saving drugs that exist now. People were still unsure about how to keep themselves and those they loved safe.
Today we are facing a new challenge, as the U.S. Centers for Disease Control estimates half of people living with HIV will be over 50 this year. Long-term survivors tell us about the need for greater knowledge of the medical complexities that link the biology of HIV and aging. While 10 or 15 years ago, no one could have predicted that aging concerns would dominate the discussion about HIV, they are a topic that needs all of our urgent attention now.
Older adults living with HIV in Maine face many of the same challenges that everyone else does. Those concerns include safe, affordable housing, access to quality health care and basic transportation.
At the same time, managing a chronic illness like HIV with the powerful drugs that have extended lives creates some very nasty unintended consequences, including accelerated aging, memory problems, weakness or frailty, stress, anxiety, depression over the loss of many friends and coping with other naturally co-occurring age-related conditions, i.e. heart, lung or kidney disease and financial insecurity and poverty.
Ongoing gastrointestinal problems occur early in HIV infections, and many survivors live with debilitating neuropathy.
The emotional impact of living a life with the expectation of an early death takes a significant toll. The stigma of HIV is very real, even after years of progress. Stories of the survival and resilience of older adults living with HIV are all around us, but seldom told, at least outside of family and close friends.
Each year on Sept. 18, we celebrate the lives of those older adults living with HIV and honor the friends and loved ones who, for whatever reason, did not have the same chance. Many of these folks are living with “survivor’s guilt,” wondering why they made it and others didn’t. Others, like our friend Charlie, realize that “life is like playing the lottery, and there are winners who awaken to a new day of possibilities, work that gives them a sense of purpose and the love and care of family and friends.”
At the Portland-based Frannie Peabody Center, the state’s largest AIDS service organization, we recognize older adults as a prime population for HIV prevention and education efforts. We know that the earlier a person is diagnosed with HIV, the greater the opportunity for effective treatment to improve health and enhance life expectancy.
Frannie Peabody Center and our community partners are working with guidelines from the National HIV/AIDS Strategy for the United States.
Our goal is to make Maine a place where new HIV infections are rare – and when they do occur, to ensure unfettered access to high-quality, life-extending care, free from stigma and discrimination, for every person, regardless of age, gender, race/ethnicity, sexual orientation, gender identity or socioeconomic circumstances.
Services and Advocacy for GLBT Elders (SAGE Maine) is committed to addressing the challenges to prevent new infections among people over 50.
SAGE is working with service providers across the state to train them how to talk to older lesbian, gay, bisexual and transgender adults about their health issues and reaching out to older adults living with HIV to build safe spaces for them to reflect on what has been and what lies ahead.
There are many opportunities for us to improve the health and wellness of older adults with HIV and to prevent new infections in Maine, and we look forward to launching a renewed campaign to end AIDS in Maine later this fall. At the federal level, we ask our congressional delegation to support the LGBT Elder Americans Act, which is a first start at addressing older LGBT adults’ unique needs.
For more information about HIV and aging, contact Frannie Peabody Center (www. peabodycenter.org) and Services & Advocacy for GLBT Elders – SAGE Maine (www.sagemaine.org).
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