The Long Winding Road
Welcome to another day in my life. Today is Sunday and I hope you are having a safe and great weekend so far. Dab the AIDS Bear and I are enjoying a down day before another busy week starts.
Recently, I celebrated my 30th year of living with HIV. Many people are now living with HIV longer due to life saving medications. The downside is a lot of people are not planning for older age and living with the virus.
t is estimated that by 2015, over half of all people living with HIV will be age 50 or older.
2011 is a new decade and baby boomers across the country are turning 65. The generation that once vowed to remain young forever now complains that aging just snuck up on me. Like Matt Sharp, who, when he received his HIV positive diagnosis over 20 years ago, did not expect to reach the age of 40, much less 50. Now managing his disease is one of the many aspects of mid life and 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 am living a life I do not like, in a body that feels wrong and I do not have a long time to live so I decided to finally take the leap and transition it has 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 would been married for years. For the first years after I was diagnosed, I took care of him. He was very sick. I had been a good wife and I was there for him. When he died I realized I had not taken care of my self. The confusion is the biggest challenge. I am 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 do not 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.
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.
So while you are making the most of each day, remember to also plan for the future.
Until we meet again; here's wishing you health, hope, happiness and just enough.
big bear hug,