On April 3, 2008, my longtime friend Don (last name withheld) tested positive for HIV, the same day as his mother’s 56th birthday. He remembers the day vividly. “I had given blood to my doctor and a couple weeks later, I still hadn’t received a call. I called my doctor’s office and they said, ‘There’s an anomaly with your blood.’ I immediately freaked out and thought, ‘God, this is it.'” Don took the last appointment of the day and a few hours later received his diagnosis, along with a few referrals. He went home “to pull myself together, call my mom and wish her a happy birthday.” He wouldn’t share his HIV status with his mother for several years.
“It stopped me dead in my tracks,” he says of that day. “And even though having an HIV diagnosis isn’t the same as it was 15 or 20 years ago, I immediately saw the end. I had dreams where I would see this road that said: ‘dead end.'”
At 42, Don represents a notable demographic segment of the U.S. population living with HIV/AIDS. According to the Centers for Disease Control and Prevention (CDC), the highest rates of HIV prevalence, by age group, are among people ages 45-49 and ages 40-45—20% and 16%, respectively. As these people in their 40s and their older peers age, spurred in large part by medical advances, people age 50 and older will make up roughly 70 percent of Americans with HIV by the year 2020.
Yet aging with HIV can be especially difficult. Older adults with HIV report high levels of isolation, yet few community spaces embrace their full identities as older people, people with HIV and, in most cases, given the epidemic’s prevalence, LGBT and people of color. Additionally, medical research has found multiple health concerns related to aging with HIV—and the psychological dimensions of living with HIV, or a new diagnosis, can spur its own storms. Without a large-scale, dedicated response, the “younger” end of this older adult spectrum, including Don, will join their older peers over the next decade in entering an aging system unprepared to meet their unique needs, despite their overwhelming numbers.
Don was born in 1972 in Maple Heights, Ohio, a suburb of Cleveland he describes as comprised largely of Polish and Italian people (similar to his family), and one that depleted in size over the decades as the economy worsened. He recalls a mixed childhood that included a family dynamic in which tough issues were never discussed openly and only worsened as he grew older. “We laughed and we loved each other, but there was the divorce and the fighting and the aggression that overshadowed all of it.”
Don’s first memory of HIV is from 1985, when screen legend Rock Hudson publicly disclosed he had AIDS. Don remembers his family reacting to—though not discussing—the controversy that erupted regarding a kiss Hudson had shared with his “Dynasty” co-star Linda Evans on an episode a year prior. “I remember just hearing ‘AIDS’ and they would show pictures of him, and they would show pictures of people with lesions and looking sickly. Those were the first images that were infused into my brain.”
AIDS raged through the 1980s—inciting more than 100,000 cases by the end of 1989, according to the CDC—yet Don doesn’t recall any mentions of the topic until his freshman year in college in 1990. “During student orientation, they give you information about all of the available resources on campus, and they talk about the health center, and if you get an STD, and how to get an HIV test. ‘An HIV test?’ I thought. That was the first time it registered as something that people needed to pay attention to.”
As Don matured into his gay identity throughout his 20s, he still didn’t feel at risk for HIV. “I felt like, well, I’ll just pick the right guy who looks like he’s ‘clean.’ It was a beautiful, blissful denial and ignorance that allowed me to behave like I did and not see a connection between my behaviors and the consequence of what could have been.” In fact, after his first handful of HIV tests yielded negative results, he admits it gave him license to continue having unprotected sex for a few years longer, believing himself immune from HIV and other sexually transmitted infections.
Years later, he would seroconvert and find solace in disclosing his HIV status to a select network of friends. “When you tell people, when we come out, we’re telling people not just to share information, but it’s also to better accept ourselves.” He would reconcile his relationship with his estranged biological father. He strengthened ties with his sister and brother, the two remaining next of kin after a series of untimely family deaths over the course of a decade. And for two years, he co-facilitated an HIV support group for a local nonprofit that gave him a sense of purpose and exposed him to a multitude of motivational stories. He soon saw himself as “one little story among a greater picture.” He realized then, “Okay, we’re all in this together and we’ll figure it out.”
But are we united on this issue—and will we figure it out? My experience in lesbian, gay, bisexual, transgender and queer (LGBTQ) rights shows that few organizations prioritize HIV/AIDS, an omission that’s more glaring in the aging and long-term field. More broadly, this topic seems virtually absent in the media, in government, and across progressive activist circles and community spaces. Governments rarely support this population, and too few aging and health providers are versed in the clinical and social support needs of people aging with HIV.
At SAGE, we frequently encounter older people with HIV who are severely isolated, in poor health and without proper financial means. Some have lived with HIV for years; others have been recently diagnosed, often with both HIV and AIDS; and many probably don’t know they have HIV. Recently I asked a case manager who runs an HIV support group in New York City about the group’s willingness to discuss end-of-life planning and set in place the necessary documents. He replied that people who have long fought to survive avoid discussing death for fear of jinxing their good luck. And what do we make of older people who tested positive in the 1980s and early 1990s, assumed they would pass away, spent their savings and then miraculously survived—impoverished and jarred by their newfound survival?
A May 2014 policy report offers large-scale recommendations. Federal agencies should fund HIV prevention programs that are aimed at older people who might require unique messaging rooted in generational differences. The CDC should encourage HIV testing among people older than 65 and promote their overall testing guidelines among all health providers. All states should adopt Medicaid expansion under the Affordable Care Act to ensure that more low-income people can access proper care—a disparity that disproportionately affects people of color largely concentrated in states that have opted out of Medicaid expansion. Federal agencies should fund more research on what it means to age with HIV, especially among LGBT people and people of color, the hardest hit groups. And the U.S. Department of Health and Human Services should issue treatment guidelines for the clinical care of older people with HIV, many of whom have increased comorbidities as early as age 50.
Six years after his diagnosis, Don grapples with remaining optimistic in a time of grief. “I’m probably healthier than I have ever been, yet I’m continually reevaluating my life and purpose, especially with the death of my family. You can’t help but think, ‘What’s my fate?” He nevertheless sees the fact that he was diagnosed on his mother’s birthday (who passed away from cancer in December 2013) as symbolic motivation. “It’s her birthday. But it also became a different sort of birth process for me because it was me seeing my life and myself in a new way for the first time.”
Don now seeks to create a simple life with clear priorities, minimize his material belongings, and focus his time on people who matter, such as his partner of three years. And when he ponders how he wants to live his later years, he replies: “Enjoying the day. Not worrying about what’s going to happen five or 10 years from now, or a year from now. I want to enjoy this moment and take it all in for what it is.”
I remember the day Don shared his HIV status with me. He brought me into his kitchen and told me in the clearest of terms, a mix of bluntness and vulnerability in his tone—everything I know about his personality. I measured my reaction, asked questions and downplayed the severity and stigma, a response I would want in a reverse scenario. We both agreed HIV was a different illness than what we read and witnessed from the 1980s and 1990s. We had a dinner party to attend that evening and before we left the house, I escaped to his upstairs bathroom, shut the door and wept. Outside, the streets of downtown Denver were lined with delegates and supporters for the 2008 Democratic convention, celebrating the possibility of a new era. As we drove through this tide of hopefulness, I sat still next to my rattled friend. I thought about life’s inevitabilities, what awaits and changes us, and how often we as LGBTQ people have had to defend our bodies from the forces that routinely assault us. A new era, yes. A different narrative, no.
Is this the dilemma that rests at the heart of sexual liberation for LGBTQ people? We crave fulfilling sexual lives, autonomy over our bodies, new norms, and the freedom to express ourselves as we see fit, without judgment, discrimination or criminalization. Yet we still encounter consequences, and our culture seems ill-prepared to deal with the contradictions that come with the fluidity and complexity of identity, desire and choice. And we know too well that a serious illness can be transformative or debilitating, depending on one’s resources and level of support. Life can seem so pressed and so short.
We have also been trained to critique and reform the same health care system that we must ultimately rely on. Many of us are too well-read and historically astute to blindly trust the industries and institutions that profess to protect us. Medications are conceived in laboratories governed as much by profit as by medical need. Government and private funds to nonprofits come with illogical restraints, ideological assumptions and unrealistic deliverables. So how do we live healthy, sexually liberated lives as queer people in the context of cultural repression and widespread economic exploitation? Does this explain the apathy, even aggression, against new PrEP treatment that could prevent scores of HIV infections if more people were on it? We remain rightfully dubious about the lines between altruism and marketing, prevention and “poison,” our health and their profit.
I’m inspired that Don sees the date of his diagnosis as a form of re-birth; it’s both poetic and precise. Yet Don’s inspiring metamorphosis, strength-based outlook and access to both medications and social support are not evenly shared among older people. What we need are solutions that draw from the hardship of people who struggle with the daily coping of HIV/AIDS, physically and financially, as well as from people such as Don who have survived HIV, grown wiser and in many ways, healthier.
It might be that HIV and aging, when seen as distinct concepts, are two manifestations of the same notion; your life becomes either more meaningful or more precarious depending on your state of mind and what surrounds you. Or perhaps the pervasiveness of death clarifies our identities; we anticipate our end as a means of reformulating our old selves. When I ask Don about the legacy he’d like to leave when he passes, he replies, “I want people to know that HIV influenced me because it made me look at life in a totally different way. It took me out of myself temporarily in order to get to know myself all over again.”
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This article by Robert Espinoza originally appeared in the Huffingtonpost.com Gay Voices blog.
Robert Espinoza is Senior Director for Public Policy and Communications at Services & Advocacy for GLBT Elders (SAGE). The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.