I’m a seventy-six-year-old cisgender male with silver hair who had sex with about a dozen guys last year. Guys only, all ages, a few regulars and some one-time online hookups, each offering a different kind of vibration and satisfaction. That tally includes my darling spouse, Daniel, in his early thirties, who himself sees oodles of men, all of them older, like me. It’s a joyful open relationship, and we can’t get or spread HIV because we’re both on pre-exposure prophylaxis, or PrEP: Truvada for him, Descovy for me.
If taken without fail, both are just about 100 percent effective in preventing HIV-1 transmission through sexual contact, Descovy showing slightly better numbers, though with fewer users. Daniel and I swallow our tablets every morning when we wake up. But Medicare, my primary health coverage, has for years put dangerous obstacles in my way, our way, and the only conclusion I can come to is that the U.S. government resists believing that anyone sixty-five or older fucks.
Let me explain. My primary caregiver, Dr. Jeffrey Kwong, an expert in sexual health and geriatrics at Manhattan’s Gotham Medical Group, moved me from Truvada to Descovy right after its approval because it’s proven to be somewhat better for old-folk kidney and bone health—osteoporosis being especially dicey for cisgender women and trans men, but a risk for most of us in our seventies. Medicare has covered Truvada—and its generic, which Truvada’s creator, pharmaceutical giant Gilead Sciences, Inc., fought against like crazy, of course—in almost every case when a caregiver says you require it because your partner has HIV or you’re having bounce-around sex. But “covers” in the language of Medicare doesn’t mean free: jolting co-pays abound. Gilead is also the maker of Descovy, and there’s no generic equivalent because Gilead’s acrobatics, called “product hopping,” made sure of that; they released Descovy years later than they could have in order to extend patent protection, according to the New York Times. Also, cisgender women who would benefit from Descovy can’t get it because Gilead didn’t offer the CDC sufficient test data that included cis women. It’s approved for males only. Have lives been lost from Medicare’s intransigence and pharma’s greed? We can’t statistically measure the number, but absolutely yes.
Another major restraint: in order to get either crucial pill, you must prove every three months that you don’t have HIV. Medicare pays for testing once a year. Those of us among the almost sixty-six million in Medicare—about half in so-called original Medicare, the rest in private, government-subsidized Medicare Advantage plans—who need PrEP must scout for a testing workaround, which isn’t exactly a snap if you’re not well-advised or advantaged, another way of saying not white, urban, regularly paychecked, or online. Trans citizens of all places and ages must clear even more hurdles.
Even with expensive Medicare—yes, you pay for Medicare—and Medigap insurance I purchase at no small cost from UnitedHealthcare, my fixed senior income makes a Descovy co-pay a serious impediment. In July, the over-the-counter price of thirty daily Descovy tablets was $2,355.87. Medicare paid $1,096.25, Medigap $888.08. My own share was $371.54, which comes to $4,458.48 a year to have sex healthfully.
I’ve been lucky, I suppose, to have so far been able to negotiate my medical life. Yet wrangling with government and private providers over PrEP makes me shake with deeper than expected rage, as I continue to be haunted decades later by lovers and friends who died oh-so-early from AIDS complications: goodbye again, dear Michael, Delbert, Joe, John, Vito. Those of us who, for a plentitude of reasons, survived that terrifying disease and the accompanying scourge of willful ignorance and vicious homophobia are now set up by the same culture to “die of old age,” a lazy and false cliché that masks the continuing Kleenex disposability of older folks. I increasingly accept that mortality and grief are folded all through life, though exploded to obscenity by war and endless greed. But I refuse to bury myself beforehand at anyone’s or any system’s behest—something I figured out when I was a sick kid.
The Medicalization of Me
H. R., the Weinstein family doctor in Brooklyn, New York, almost killed me when I was eight years old. I’ve written about this before, but it bears recounting: in 1955, I became drowsy and feverish at summer camp in the Catskills, was driven home, sent to bed by our cheerful doc, and given deadly sweet capfuls of 7-Up every hour to prevent dehydration, a word I had never heard. When I became unconscious, I was sped in my dad’s Buick Special to the nearest hospital to have my appendix taken out—until an unnamed hero drew and tested my blood and yelled, “Stop.”
HIV testing began in 1985—not for those queers possibly infected, but for blood donors who might infect innocent others.
It turned out I was diabetic, a condition easy to suss for centuries, at least since flies, those winged and accurate diagnosticians, sought and sipped sweet diseased urine in ancient Rome, though for some reason, it escaped the notice of our family doc. I woke up, alone I think, in a hospital room glazed by sunlight. Was this a hotel for kids? I was crazy hungry because insulin, the pancreatic hormone that saved my life, can create a sense of immediate starvation. I recall lifting a shiny dome off my first breakfast tray, staring at one slice of cold, white toast, topped with a pat of gelid butter. I devoured it.
My parents—Edith, born in Westfield, New Jersey, to a Sicilian shoemaker father and errant mother, and Harry, off the boat from Kyiv—must have been scared and puzzled. So we went from doctor to doctor in those Eisenhower 1950s, all of them expensive, avuncular men. Oddly, one Park Avenue big-namer wrote my mom a check for $100 to buy science books because I was “a very smart boy,” though he had no particularly helpful medical advice. We went to Macy’s right away to purchase hardcovers. My bookie dad kept the change.
Every one of the sensitive medical souls we visited said, within my hearing, that because I was diabetic I would “die young.” Not “younger”—“young.” I was already young.
The punitive dietary instructions the Weinsteins were sent from Boston’s famous Joslin Clinic, now the Joslin Diabetes Center, commanded Mom to weigh and measure insipid, processed supermarket staples so her damaged child would stay OK. The Joslin pamphlet, which I read over and over, set off true, personal alarms, and I am proud to give those benighted recipes credit for a future love of crackling, sapid food from around the globe.
On my most recent birthday, I stared at the bathroom mirror and told the ghosts of my mahogany-desk doomsayers that the child they casually, prematurely erased is still around, cooking and eating anything I like, fornicating with whom I want. They led me first to become a biologist, for self-protection, then a journalist, so I could fight back. I trained myself to eat, cook, enjoy. Cue the Bee Gees’ “Stayin’ Alive,” except I’m not a “woman’s man” and have plenty of time to talk.
Still, managing my diabetic self—staying alive—has not gotten easier or cheaper. Over the last two decades, the cost of insulin has skyrocketed by 600 percent, as NPR reported last year. After years of pressure from activists, Democrats in Congress finally passed a $35-a-month price cap for those on Medicare last year. Senate Republicans, however, rejected the same cap for the more than twenty-one million diabetics who are under the age of sixty-five. Those patients who can’t afford retail or even insured prices, which vary widely with type but can easily reach thousands of dollars annually, must forgo food, find charity, or reduce the necessary dose and court illness and death.
Yet even “generous” Medicare makes the process of obtaining insulin a stressful rigamarole. Every single month I start from the beginning because the order must be rubber-stamped by a pharmacy’s “third-party billing office,” as if I haven’t required the clear fluid in a glass vial every month for most of my life. I’m online or on the phone for hours and hours. Not everyone has the resources to do that, an infuriating commonplace.
Dr. Anastasios Manessis, my treasured endocrinologist, agrees that the new Medicare price cap has made it easier for some of his patients to afford their essential insulin and supplies. But the whole system is beyond broken. Insulin pump paraphernalia, which I require, must be shipped from a preapproved durable medical equipment, or DME, vendor, and this, he said to me in his office, is what happens:
I send the prescription to you, but your party may not work [the vendor could refuse to fill the order]. So I call the company, and I cannot get a straight answer. . . . Second problem, you find the right DME . . . but there are different stations around the country: one of them accepts prescriptions, processes the verification when data gets approved, sends it to another part of the country and another office, makes sure we get them some medical records and justify that everything is there. And then another part of the country will send it to you when it gets approved.
He rolled his eyes. Covid-19, he added, made the supply maze doubly insane. Why an honest doc would accept any Medicare patient like me is an enigma. But because of Dr. Manessis and his staff at Endocrine Associates of West Village PC, here I am, unaccountably thriving and horny.
In another universe, when I was in college, I stayed away from doctors. I’ve no idea where I got my insulin, boilable glass syringes, and thick reusable needles. But if something wanted fixing, like when it burned when I pissed, I’d submit and get an antibiotic for urinary tract infection or gonorrhea—can’t remember how much I paid. But neither the yawning university doctor who said, “You got the clap again,” nor any other caregiver for the next few decades asked me what I did for sex or acknowledged in any professional way that I loved men, even after I made that reality cut-crystal clear. The word gay turned them some kind of deaf, or stoned. Oh, they may have been queer themselves.
I was having sex a few times with a few people before Stonewall, but Vietnam and simultaneous liberation movements responding widely to our capitalist death machine gave me the butt-kick I needed to come out as the first public faggot at my University of San Diego campus. (I did look pretty good teaching Hegel to surfer undergrads in long hair and gender-fuck drag. I always carried a handbag.)
Every one of the sensitive medical souls we visited said, within my hearing, that because I was diabetic I would “die young.”
In 1977, I moved back to New York to live with an art-worlder and poet I met at UCSD. Because I had published restaurant and film reviews at a weekly paper there, I took clips to the Soho Weekly News and was hired as restaurant critic as well as an arts editor. Steeped in the hopeful socialist-feminist liberation politics of the moment, I tried to organize the place and get health coverage for the staff—and was almost successful. Soon, like a ready egg, I was poached by rival Village Voice to be their food critic and went on to edit visual arts and architecture pieces and write all sorts of things, including queer topics fashionable and not. My partner and I did not have an open relationship, but New York’s queer life in bars and on the streets throbbed with glitter and sweat, Queen and Sister Sledge providing a thumping soundtrack. Liberation marches were angry and loud, not yet muffled by two-faced, corporate-branded Pride. We wanted our rights, and we wanted them now.
The arrival of the HIV/AIDS crisis in the early 1980s put a damper, to say the least, on our feisty spirit and adventitious sex; gay friends and strangers suddenly sickened, wasted away, and died from pneumonia and puzzling cancers. The mystery was first called GRID, or Gay-Related Immune Deficiency, and then AIDS, or Acquired Immune Deficiency Syndrome, the next year—the word syndrome meant that no one was close to figuring it out. There’s no single-path etiology for what has been called the AIDS “crisis” or “epidemic,” but likely examples of the disease surfaced in the United States in the 1970s: one social worker in New York City said that unexplained deaths in her orbit were called “junkie flu” and “the dwindles,” referring to the signature, skeletal bodies of those needle-users and queers infected with what would become known as HIV/AIDS.
HIV testing began in 1985—not for those queers possibly infected, but for blood donors who might infect innocent others. Pardon me for accurate cynicism. Fearful caregivers in the dark spread their darkness: some wouldn’t treat patients with symptoms or even out, cisgender males like me, who weren’t obviously ill. In 1987, the AIDS Coalition to Unleash Power, or ACT-UP, formed to street-fight drug companies who developed drugs most patients couldn’t afford, and the oblivious Food and Drug Administration: “Hey, hey, FDA, how many people have you killed today?” was a frequent chant at demonstrations.
The same year, azidothymidine or AZT, sold as Retrovir, was found to prevent the virus from replicating, but side effects sometimes sickened and killed patients almost as quickly as did the virus itself. Some of those infected, including two of my best friends—still alive!—waited by accident or intention until safer and effective combinations of newer drugs were developed. My internist at the time, in queer-central West Village, measured my blood glucose, prescribed insulin and newish disposable syringes but was silent about sex, never asking if I was using condoms. The “On Me Not in Me” buttons I saw around the office at the Voice in the late 1980s did a much better job than my physician.
Health care is a political struggle, which I finally figured out at the Voice, where I was active in our small, “cockroach shop” District 65 union. In 1982, just as the HIV virus was starting to kill us by the hundreds, then thousands, I proposed that same-gender partners be included in the Voice health plan—well before queer marriage or even domestic partnership was an option. Our owner at the time, Rupert Murdoch, didn’t object because the fat weekly was a cash cow—before Craigslist and the internet gradually destroyed the classifieds, a main source of the paper’s revenue—and the company didn’t want a costly disruption.
The contract agreement was “the second union contract in the United States, the first by a private company, and the first to be widely reported on, to offer same-sex couples these protections,” according to my own Wikipedia page, so I guess it’s true. The paper’s red-diaper-baby lawyer Bert Pogrebin, married to Letty Cottin Pogrebin, a founding editor of Ms. magazine, invented the term “spousal equivalent,” which sounds like something from a chemistry course. I monitored the cost of this coverage and spread the word because Murdoch minions asked us not to. It turned out that treating patients with AIDS tended to cost health insurers less than pregnancy or cancer. AIDS was cheaper. What a thing to have to say.
Rumors of Progress
Truvada, developed by Gilead as treatment for HIV with the help of taxpayer-funded research, was approved by the Food and Drug Administration as a preventative on July 16, 2012—which happens to have been my husband’s twenty-first birthday; he started on it five years later. (It took Gilead nearly four years to start placing ads or targeting those whose lives could be made safer by Truvada—although queer word-of-mouth got the process started on its own.) Gilead’s chemically similar Descovy was given FDA permission seven years later, in 2019. A third HIV shield, cabotegravir (CAB), developed by pharma giant Johnson & Johnson in concert with the clever HIV-oriented company ViiV Healthcare was approved in December 2021. It’s injected into the buttocks, first as two initiation shots administered one month apart, and then every two months after with the hope of increasing “medication adherence” because no one can be trusted to take pills daily, especially those sex-addled queers. CAB seems to be a knockout, but who knows about it, and who, at $22,000 a year out-of-pocket, can afford it? The rare, diligent patient who gets the go-ahead still must remember and arrange to see the person with the needle on time. To anyone old enough to have lived, as they say, “through AIDS,” these potent shields against HIV infection will trigger contradictory tears of grief and relief.
To anyone old enough to have lived, as they say, “through AIDS,” these potent shields against HIV infection will trigger contradictory tears of grief and relief.
I didn’t know about Truvada until the summer of 2016, when my therapist friend Don told me, voice trembling, that it was a gift we older gay guys could never have imagined. We were walking through “Art AIDS America” at the Bronx Museum of Art, looking at works by artists, some of whom we had known, who died miserably, unavoidably, before AIDS double-drug cocktails could keep them alive.
My community of older queers was virtually invisible to HIV-drug testing and marketing. “The studies that were used to prove the efficacy of PrEP have been very limited in terms of including older adults,” Gotham’s Dr. Jeffrey Kwong said in a recent podcast to medical professionals. Even now, PrEP ads rarely include wrinkles.
In July 2023, however, senior queers and our medical practitioners got some potentially good news. After a public petition, the Centers for Medicare and Medicaid Services proposed “to cover PrEP using antiretroviral drugs (whether oral or injectable) approved by the U.S. Food and Drug Administration (FDA) to prevent HIV infection in individuals at high risk of HIV acquisition.” The required HIV testing was also included, and coverage would be full, starting in October 2023. But as of this writing, there’s no sign, anywhere, that it’s started—definitely not for me. (Also, a court case was filed by a group that objects to covering PrEP on religious grounds. In September of last year, a U.S. district judge in Texas agreed, though the judge’s ruling is now being appealed.)
My prolonged medicalized life continues to confirm the entire health care system’s blindness to anything but profit. New HIV infections are recorded every day in this country, some thirty-six thousand in 2021 alone, at least 9 percent of those in individuals fifty-five and older. This needn’t be the case with PrEP available. And yet only around 30 percent of men who would benefit in the United States were prescribed it in 2021. This varies significantly by geography, race, and, unsurprisingly, age. PrEP use increases with age, and is highest among men aged thirty-five to forty-four. A 2021 study neglected, however, to measure PrEP use among men older than sixty-five, who are either statistically insignificant or must not be fucking at all. Much too little, much too late, for queer seniors like me and so many others.
Soon after we met, my endocrinologist Dr. Manessis asked me quite gently how my erections were. It opened a wider door to my complete, beyond-priapic sexual self. “Opening the door” is the phrase Dr. Kwong uses to describe his soft way to broach conversations with reticent, uneasy oldsters about our sexual imaginations and the bodies we have and want. He recommended this “open door policy” during an August 2023 webinar to a few dozen geriatric caregivers via MATEC, Midwest AIDS Training + Education Center, a publicly funded organization based at the University of Illinois College of Medicine at Chicago.
My prolonged medicalized life continues to confirm the entire health care system’s blindness to anything but profit.
This locally rooted organization and so many like it nationwide have become necessary, inevitable stopgaps and, more crucial, challenges to a system nominally concerned with health but dedicated only to profit. Early credit for focused queer-elder care goes to New York-based SAGE: Advocacy & Services for LGBTQ+ Elders, founded in 1978 by forward-thinking gay-lib activists to advise, advocate for, and provide embracing spaces, free communal meals, and entertainment for any queer seniors who seek help, fellowship, and the kindness of strangers—no, friends. One wonderful evening, I watched my buddy Dennis play piano and warble Cole Porter to a roomful of hum-along SAGE members and guests. The organization’s motto: “We refuse to be invisible.” Since its founding, SAGE has stretched its mission way beyond local support. “Age should never be a limiting factor in HIV prevention,” Terri L. Wilder, MSW, SAGE HIV/Aging policy advocate, emailed me. “SAGE’s commitment to the sexual health of older LGBTQ+ people is ensuring that they have access to PrEP through Medicare, covering both pill and injectable options while eliminating cost-sharing or deductibles.”
Housing Works, a longtime HIV-testing and AIDS-homelessness center founded in 1990 and based in New York, D.C, and Haiti, has become an inviting PrEP resource, too, offering free or subsidized PrEP, STI testing, and relevant support. More recently, there’s PrEP4All. Founded in 2018, it’s a group of “community members, healthcare professionals, lawyers, and academics all dedicated to increasing access to lifesaving HIV medication. Every member of PrEP4All has been personally affected by the HIV epidemic, and most of us rely on HIV medications every day.” In the tradition of ACT-UP’s risky albeit effective attacks on the U.S. government’s willingness—even, in some cases, hope—to see gay people die, PrEP4All organizes to lower the price of PrEP and “ensure universal access to HIV prevention and treatment.” In July 2023, the nonprofit announced a nearly $670,000 grant from the Elton John AIDS Foundation “to ensure equitable PrEP access for all in the United States.”
As for my own access to Descovy, I stumbled five years ago upon the Patient Advocate Foundation’s Co-Pay Relief Program, which was started in 2004 by one Nancy Davenport-Ennis, who, with a volunteer staff, wrangled funding for patients who couldn’t afford their drugs and grew to offer small annual grants to those with manifold life-or-death expenses. I was fortunate to have excavated this workaround help. It’s shameful that patient advocate relief must continue.
I’d build a utopian health world with bricks like these, bottom-up, not giving up, but insinuating everywhere. Sure, I’ll go to the mat for a single-payer system, but we must survive in the very mean meantime, not only here but worldwide.
None of the grown and mushrooming mutual aid networks like those above could figure themselves without driven caregivers, thinkers, grievers. In a reverse interview, because Dr. Kwong, my bedrock, usually asks me the patient questions, I wanted to know what made him the relentless advocate he is. “I grew up in the San Francisco Bay Area and was part of the volunteer buddy program, where you would go and visit or get assigned a buddy who was living with HIV,” he told me. “And part of my initial interest or connective, you know, affinity for this was because at the time I was in my late teens and had just come out to my family.”
“Is there something, or a fantasy, you have that would make HIV health care a whole lot better?”
“Just a basic step is to talk and ask about HIV. Because, you know, you’re talking about screening or testing as part of routine care, and even though it is a recommended practice, people don’t do it.”
When he addresses audiences, which he does a lot, he says that only “a handful” have been offered an HIV test.
“We need to really focus on that, as they say, ending the epidemic.”
Fury and gratitude move my HIV seesaw. I didn’t ask him, and I hope it’s not unprofessional to say, but I like to imagine Dr. Kwong is pleased I’m an old gay guy having sex. I wish everyone else who wants to can do the same.