I asked him to strip to his underwear and climb onto the gray-leather exam table so that I could perform a thorough examination. He sat awkwardly, shoulders hunched, hands squeezed between his knees, and toes touching the step below. With the exception of his thin appearance, Allen had no hallmarks of advanced AIDS like swollen lymph glands, a yeast infection in the mouth, or purplish lesions. Looking for evidence of CMV in the eyes is difficult with the standard equipment, so I didn’t bother to look, but Allen reported no loss of vision. Under my stethoscope, whose diaphragm I moved casually across his back from the sharp shoulder blades to the lower edge of his ribs in a zigzag pattern, his lungs sounded clear to me, and he didn’t have the characteristic staccato cough of PCP, brought on by the slightest effort at deep inspiration. I asked him to lie down so that I could listen to his heart and then gently press on his abdomen in search of an enlarged liver or spleen. With each breath I could observe the expansion and contraction of the individual ribs of his ribcage because of the loss of body fat.
Since the recent HIV test had been negative, I suspected that he might be suffering from the symptoms of newly acquired HIV, not AIDS. The timing seemed right. As early as two weeks after being exposed to HIV the virus runs wild, invading every organ in the body, before the immune system responds and in most people negotiates a tentative truce that only one side honors. During that spree—known as acute retroviral syndrome—the infected person often, but not always, experiences symptoms like fever, drenching sweats, persistent cough, diarrhea, weight loss, and extreme fatigue. He can look like someone with advanced AIDS. The syndrome sometimes last for months, like a case of mononucleosis. You don’t see it often, even if you’re an AIDS specialist, and it’s easy to miss because it can mimic a dozen other illnesses. Further complicating a diagnosis of acute retroviral syndrome, HIV may be one of several sexually transmitted diseases, like syphilis, gonorrhea, chlamydia, herpes, and hepatitis or an intestinal parasite like giardia, imparted simultaneously during a single fateful sexual encounter. I would have to check for these problems in addition to screening him for HIV.
After getting dressed, Allen admitted that he didn’t always practice safe sex. As we spoke more about the risk of HIV infection during unprotected sex, he grew visibly alarmed. He wanted to discuss “PrEP,” or preexposure prophylaxis, which involved taking a medication that the Food and Drug Administration had approved in 2012 and the Centers for Disease Control and Prevention promoted to prevent HIV infection in people at risk of contracting the virus. If taken as directed, that medication is more than 90 percent effective in preventing HIV infection, almost as good as a birth control pill to prevent pregnancy. I explained to him that before I could prescribe PrEP, I had to be absolutely sure that he wasn’t HIV positive. If he was, he might become resistant to that medication, which would make future treatment more difficult.
I sent Allen’s blood sample to an outside lab. If negative, the result would be reported in twenty-four hours. If positive, it would take several days more because of further testing to confirm the diagnosis. I imagined that the wait would create intense anxiety, disturbing his sleep with anxious half-dreams and distracting him during the day from his work as he contemplated the implications of a positive diagnosis. I recalled the unbearable two-week wait for the results of my own HIV test thirty years earlier. When you fantasize about winning the lottery, you think about all the wonderful ways you’ll spend your money—the new house, world travel, meaningful donations to needy causes. When you’re waiting for the results of an HIV test, you think of the worst scenarios—the difficulty of finding a partner who won’t be afraid to touch you; coming out of a different kind of closet; an early death. The knowledge that they’ve been infected with HIV devastates most people and fills them with an aching loneliness that few others can feel or comprehend because HIV infection has so many more ramifications than other life-threatening illnesses, like cancer, or ones that can kill you quickly, like the Ebola virus. I still can’t really comprehend it, even after witnessing hundreds of deaths from it and caring for more than a thousand men harboring it.
Allen was one of twenty patients that day. Many of the others were also interested in or already on PrEP. In recent years, that has become typical. I spend a lot of time counseling single men or men in “open relationships” about how to protect themselves against HIV. In an open relationship, men with partners or husbands don’t hide the fact that they’re having sex with other men. In the age of PrEP, fewer men use condoms, and barebacking—that is, men fucking without condoms—has resumed where it left off, as if the nightmare years of the 1980s and 1990s had never happened.
I wholly endorse PrEP, just as I wholly endorse oral contraception for birth control. I don’t buy the argument that the birth control pill or PrEP encourages promiscuity. Men, and gay men in particular, are promiscuous, have always been promiscuous, and always will be if given the opportunity. The treatment and prevention of HIV infection is a public health emergency and will continue to be a public health emergency until we have a cure or an effective vaccine to prevent infection, neither of which is on the immediate horizon. HAART and PrEP are our best bets for eradicating the AIDS virus. If everyone infected with HIV took HAART and every person at high risk of HIV infection took PrEP, the epidemic could end in a generation. But denying the reality of human sexual behavior fuels epidemics rather than extinguishes them. Thirty-five million deaths from AIDS and another forty million living with HIV today are the price the world has paid for such denial in the early years of the epidemic.
But PrEP doesn’t prevent other STIs. Every week I see someone with rectal gonorrhea or chlamydia, and every few months another case of syphilis. Before AIDS, sexually transmitted diseases in gay men were almost as common as colds. But as in the aftermath of a hurricane or other natural disaster, once a community has been rebuilt, life returns to a semblance of normal. Before PrEP and the decline of condoms, many of my patients would almost certainly have acquired HIV, of that I’m convinced.
Unfortunately, Allen’s HIV test was positive. He’d also contracted syphilis and giardia, which gave him three reasons to be ill. I phoned to let him know the results, and he agreed to come to the office the following day to discuss what to do next. When we met, I didn’t chastise him for being careless or ask him why he hadn’t consistently used condoms or thought about PrEP earlier; those remarks would have been pointless. Instead I gave him a comforting hug.
Then, as I sat facing Allen in the examination room where I’d seen thousands of patients over thirty years, I had fleeting glimpses of the men who’d died before I could offer lifesaving regimens. There was Donald, whose entire arm KS had turned into a bloated, blistered, and useless appendage, the pain so agonizing that only amputation at the shoulder joint provided some relief; and then after dealing with the ghost pains and the loss of his dominant arm, he succumbed to another opportunistic infection a few months later. There was the haunting image of Raoul, who leaped naked from his hospital bed and ran down the hall of 11 West crying out for help in a last burst of energy before dropping dead at the foot of the nurses’ station. And there was Philippe, a concert pianist with a brilliant future who flew to Moscow for a piano competition with an IV line that pumped medication to treat a sight-threatening infection, which was then detached for a few hours while he gave the final performance of his life. I recalled my friends and colleagues Neal, Stan, Bob, Ron, and so many others whose stories I’d recorded in my journals and who perished in a war that seemed without end. That was a hell I never wished to revisit. In the waning years of my career, ensuring that none of my patients dies of an AIDS-related problem, or acquires HIV, has become my primary mission.
I thought of the relatively small number of men in my practice who were lucky enough to have survived into the era of HAART. As a result of our early anti-HIV therapy, the majority of them developed lipodystrophy, a strange syndrome characterized by an abnormal redistribution of body fat that often leaves th
e face bony, arms and legs pencil-thin and roped with prominent veins, and flattened buttocks. Some people acquire “buffalo humps,” collections of fat at the base of the neck that can be as large as a softball; “man-boobs,” as one of my patients refers to his pendulous breasts; and bellies as rotund as those of a woman in the third trimester of pregnancy. At its worst, the face can look monstrously distorted as if it were embedded in a pillow of fat, and the body shaped like Humpty Dumpty. Yet otherwise most of the people who’ve developed lipodystrophy appear to be healthy. They’re full of energy, have normal appetites, and remain actively engaged in the world.
These strange and sometimes devastating side effects occurred primarily as a result of two medications, AZT and D4T, for reasons that aren’t entirely clear. And in these cases lipodystrophy is for life. Over the years plastic surgeons have become more adept at improving the architecture of the face with artificial fillers or fat transfers, but there’s nothing that can be done about plumping up the rest of the body or shaving off significant amounts of fat. For many, lipodystrophy amounts to a scarlet letter, a constant reminder of HIV, and for some it is a badge of shame in the outside world. As one of my patients remarked with self-deprecating humor, “Once I turned heads. Now I turn stomachs.” Most of my patients have learned to live with it. They’re grateful to have survived—AZT and D4T saved their lives—but it’s the kind of side effect I wouldn’t wish on my worst enemy. Every time I see them, I feel like a surgeon who bungled an operation; I feel responsible for the outcome. But of course AZT and D4T were at one time among the few tools I had at my disposal.
I thought of another group of men who were prepared to die and elected to go on social security disability in the early 1990s, when there was no hope for survival. Inadvertently, HAART created a lost generation, like those who suffered from posttraumatic stress disorder after World War I or II or the Vietnam War and were never rehabilitated to a normal life. Cruelly referred to as GODs, for gays-on-disability, these HIV-positive men waited for the call of the executioner, but the executioner never summoned them. In subsequent years they’ve been unable to maintain their skills and have scrambled to find a purpose for their lives, with varying success. Most are victims of an imperfect social safety net—if they returned to work, they’d lose their Medicare coverage and access to lifesaving medications; if they remained on Medicare and social security disability, they weren’t allowed to work more than twenty hours per week. Unless they had saved vast sums of money, came from a wealthy family, had a boyfriend or husband with a good job, or were lucky to have private disability insurance, they eke out a meager existence on monthly social security checks alone.
When I fill out their disability forms today—a ritual I undergo once a year for each of these men—I’m stretching the truth to a certain degree. Yes, most of them can lift, squat, push, pull, climb, and sit; they can carry on a conversation and endorse checks. By the criteria on the forms, the majority aren’t physically disabled or cognitively impaired, but no one would hire them, and they’re incapable of holding a job. They’re the walking wounded, their impairment no less real or legitimate than that of the traumatized soldier who witnessed the deaths of comrades or escaped his own death by the skin of his teeth.
I still have a good number of long-term survivors in my practice. Many of them will live to be eighty or more. My oldest patient with HIV is almost ninety. Until a couple of years ago, he walked the five miles from his apartment to my office for his appointments. Except for lipodystrophy, you’d never know that he’d once nearly died of AIDS. In the 1980s and 1990s, my go-to consultants were Dr. R. the lung specialist, Dr. F. the retinal specialist, and Dr. A. the gastroenterologist, each assessing various opportunistic infections. Since that time, as my patients grow old, my go-to consultant remains a gastroenterologist, who now performs colonoscopies to screen for precancerous colon polyps, as he does in my HIV-negative patients, but also I call on a urologist, to deal with the annoyances of enlarging prostates and the diagnosis and treatment of prostate cancer, and a cardiologist to manage coronary artery disease or treat heart attacks. Locked away as if in a maximum-security prison, HIV no longer threatens almost everyone in my practice.
“We want our patients to die of little old men’s diseases, not AIDS,” a friend of mine, an infectious disease specialist, once quipped. And for the most part we’ve been successful. For those with access to care and who are compliant with their medications, death from HIV is no longer inevitable or even likely.
“Although your virus might not be detectable after treatment,” I said to Allen as my thoughts and words returned to his particular predicament, “you will not be in remission, like a person whose cancer has been successfully treated. I hope that won’t always be true, that there will be a cure, but I have to advise you based on what we’re doing in 2016. You have to be prepared to be on some sort of treatment for the rest of your life. The responsibility for ensuring that you never go without medication will fall on you and on you alone.”
I didn’t tell Allen that I won’t be at his side during those later years to cheer him on, as I had been with the fortunate survivors of AIDS in my practice, because he will outlive me. Maybe no physician will be at his side to age with him, manage his HIV infection, and treat medical problems that have nothing to do with HIV, for fewer doctors are choosing to pursue a career in primary care because of the low pay compared to the income of specialists, and of those even fewer have the expertise or desire to treat patients with HIV. Infectious disease doctors are not trained or prepared to act like primary care physicians; most of what they do is hospital-based. And private practice, in which a young doctor opens an office and spends a lifetime serving a community like Tom and I did, is going the way of the dodo, replaced by physicians employed by hospitals and other organizations. Those doctors, with expectations different from my own, may be less inclined to practice with that sort of dedication and commitment.
Allen listened attentively as I explained how easy it was these days to treat HIV. Just a single tablet, I said, when twenty years earlier you had to take a shitload of medications. You don’t have to take it exactly the same time every day, but you need to take it. I don’t care if you’re vomiting or suffering from depression: don’t miss that pill! I assured him that he wouldn’t develop lipodystrophy. After starting his medication, I wanted to see him in four weeks to make sure that his viral load had dropped to a very low level. After that, for the first year he would need to be monitored quarterly, to verify that he was responding fully to his HIV medication and check for early signs of significant side effects; thereafter he would see me twice yearly, because treating HIV for the long haul is, in a way, still a grand experiment. We had twenty years of history with HAART, but not fifty. Perhaps there would be adverse reactions we’d not yet anticipated, or maybe not. He would need to tell his sexual partners about his HIV infection before having sex with them and would still need to wear condoms, or have them wear condoms, if he topped or bottomed with any of those partners, to minimize the risk of acquiring other STIs. The risk of transmitting HIV would be virtually zero if he didn’t interrupt his treatment. He could live a normal life, travel anywhere in the world, eat whatever he liked, within reason, and make plans for the future like any young man his age. He nodded in acquiescence.
Allen made it easier for me by not falling to pieces. Throughout the conversation his face remained unperturbed, as if we were talking about something less momentous, like the weather. Perhaps it was the arrogance of youth. At twenty-four, the idea of one’s mortality hardly registers. The internal struggle I’d imagined for him as he waited for his diagnosis apparently had never happened—I had been projecting. In the 1980s we had trembled with terror because friends and acquaintances were dying as if randomly picked off one by one before our eyes. In the twenty-first century young people don’t know anyone who has died from AIDS, so they’re less afraid. Taking just one pill—“one pill, that doesn’t seem right to me,” one
of my long-standing HIV infected patients once said with befuddled amusement—now makes AIDS seem manageable, hardly dangerous at all, like Charles Manson rendered harmless by his lifetime prison sentence.
Introspective and bright, Allen appeared to have come to terms with the possibility that he had HIV in the few days before this visit, and he accepted the results and my upbeat message with surprising equanimity. He was determined to do whatever he could to maintain his health. Once his three ailments were treated, he would regain the weight he’d lost and feel healthy again. Twenty-five years earlier he might not have been so composed and I wouldn’t have been so hopeful. After sending his prescriptions to his pharmacy electronically—it still seemed like magic to me—I closed the lid of my computer and we both stood up.
“Thank you for your time, doctor,” Allen said without the trace of a tear. “I know I’m going to be OK because I’m in good hands. I promise to be a good patient.”
“Yes, Allen, you’ll be OK,” I said. “But don’t do it for me. Do it for you. I can prescribe the medication, but you’re the one who has to take it. Now it’s up to you.”
“Yes, of course.”
“See you in four weeks,” I said.
“See you in four weeks.”
I looked him in the eye and smiled reassuringly. Then I gave him a pat on the back and moved on to the next patient with laptop in hand. Paper charts and scribbled notes were now things of the past, like the hundreds of men I’d lost to the worst disease I ever encountered during my long career. If I never see another patient with full-blown AIDS again, I thought as I pushed open the door of the adjacent room, I’ll have absolutely no regrets.
Plague Years Page 23
