During the next two years, Bruce took his medications intermittently and gradually deteriorated, developing dysentery from the cryptosporidium parasite—the same parasite that had contributed to Art’s death a decade earlier—and a severe herpes infection in his esophagus. It was difficult for him to swallow without piercing pain, and he could barely drink enough fluids to offset the relentless flow of diarrhea. In December 1995 I admitted him to 11 West because of headaches, problems with balance, and an inability to coordinate the muscles of his eyes. He’d fallen numerous times at home, breaking a glass coffee table on one occasion, and could no longer drive. A brain scan showed lesions that looked suspicious for an untreatable brain infection called PML that killed almost everyone afflicted. Too weak to sit in a wheelchair, he had to be transported from test to test on a gurney. I considered referring him for hospice care.
James, one of 11 West’s social workers, met with Bruce and his sister to draw up a power of attorney to determine who would act on his behalf if he could no longer make decisions. They decided that his mother would take responsibility for his health care and his father his condominium. Because of profound weakness in his right arm, Bruce had just enough power to make a few indecipherable cross-hatches. The organism causing PML had damaged the center of his brain that controlled movement in his right arm and leg, like someone who’d had a stroke. It also affected his speech, which was garbled, and I had trouble understanding him. In frustration he mumbled more loudly, which did nothing to make him more comprehensible because he tripped over words and dropped whole syllables or vowels.
In planning for his eventual discharge, Bruce agreed to have a visiting home health aide because he lived alone; no one mentioned hospice to him yet. His mother, who’d just been diagnosed with breast cancer, cried during a private meeting with James and pleaded with him not to let her son know his prognosis. But Bruce was fully aware of his condition and its prognosis. How the two of them would cope in the upcoming months was hard for me to imagine. Nothing I said consoled them. Fortunately, Bruce’s sister and father remained level headed throughout the ordeal with their unflagging love and support for Bruce and his mother.
Someone, not I, told Bruce that he had “eight months” to live, and Bruce couldn’t get that number out of his head. He was going to beat this thing, he said. I didn’t contradict him. Over time I’ve learned that doctors, myself included, are often wrong about the precise timing of a person’s death. There have been times when I thought a person couldn’t survive more than a few days, yet after several weeks he was still alive. Or death came in days when it seemed that it would not occur for months. When patients ask me how long they have to live, I parse my words carefully. I’ll tell them that eight months, three years, or even ten years is too short for a man or woman in the prime of their life who ordinarily could expect to live to about eighty. In the early days of the AIDS epidemic, such news was more than most people could bear. By the mid-1990s it was less of a shock. Most of my patients with AIDS had already lost a good number of friends to the disease. Although it is hardly a consolation, I assure them that I’ll do everything in my power to keep them as comfortable as possible during the process of dying with plenty of narcotics if needed. Such uncertainty distresses people. Once we’ve reached the acceptance stage of our terminal illness, humans deal better with concrete information, no matter how horrible the news.
After settling matters related to his long-term care, I discharged Bruce to his parents’ home. While there he fell down several times and couldn’t get up, which he blamed on restarting AZT rather than on his HIV infection. He also lost control of his bladder. His mother requested a bench for the bathtub and a four-pronged cane to help him walk. After reducing his AZT to only one pill a day, instead of the six I’d advised, he wanted to try something else. At the end of January 1996, Bruce’s disability was too much for his parents to manage and I readmitted him to 11 West. He was still fully capable of making decisions about his health care, and after a long discussion I convinced him to accept the assistance of Horizon Hospice, but he wanted to go back to his apartment and not to a hospice facility. I delayed discharging him until I could guarantee twenty-four-hour care, wherever he chose to go. I compromised by releasing him back to his parents and having an aide assist him at night, with periodic visits by the hospice nurse.
Before discharge, Bruce asked me about a promising and recently approved anti-HIV drug, Invirase. Invirase belonged to a class of medications called protease inhibitors and seemed most effective when combined with two other anti-HIV agents. Monotherapy—the use of one drug to combat HIV—had proved to be ineffective; dual therapy also seemed ineffective. Scientists hoped that the combination of three medications would be powerful enough to suppress the AIDS virus, a strategy that worked in treating tuberculosis. I doubted that Invirase would help Bruce at this late point in his illness, but I agreed to order it for him.
During a home visit a few days later, the visiting hospice nurse expressed concern that Bruce was in denial about his illness because he insisted that he would get better. I agreed with her assessment. Despite the obvious need for twenty-four-hour care—he was too infirm for his parents to handle alone; they couldn’t afford to hire full-time professional caregivers—Bruce refused to leave his parents’ house. Although overwhelmed and feeling guilty about her inadequacy as a caregiver, and struggling with her breast cancer, his mother concurred with him. In mid-February when he requested an end to home physical therapy because he could supposedly walk to the bathroom on his own, I noted in his chart, “Whatever he wants. I give up!”
One week later his parents brought Bruce to my office in a wheelchair, his head lolling on his neck like a fruit too heavy for its stalk. He couldn’t begin Invirase yet because of a potentially significant interaction with a medication a dermatologist had prescribed to treat pimples on his face, a problem that seemed minor to me in comparison, but Bruce was in charge of his health care, not I. Without doing anything about his HIV infection, he seemed slightly better, though he remained tremulous and couldn’t walk without assistance. I promised to order Invirase after he finished the dermatological medication, which he did a week later. He called to remind me to phone the pharmacy. The hospice nurse questioned my order because it was unusual to provide expensive treatments (Invirase cost nearly a thousand dollars per month) for a terminally ill patient. She wondered whether hospice care was still appropriate for him.
In the space of a decade, Horizon Hospice had lost its flexibility in dealing with AIDS patients. In the 1980s a homebound terminally ill young AIDS patient could receive intravenous nutritional support and medications to treat or prevent opportunistic infections with full support from hospice. In that extraordinary setting such treatments and end-of-life care were not viewed as incompatible. But concerns by Medicare and third-party payers about skyrocketing healthcare costs put an end to that practice. Hospices were given a limited budget to care for the dying patient; expenses beyond that had to be covered by the hospice, which threatened to drive them out of business. If hospices cared for people in the terminal phase of their illness, why should they administer expensive therapies that didn’t alter the course of the disease? It was a reasonable question to ask. The answer was difficult to deliver, especially to a thirty-year-old man who wasn’t ready to die and who rejected the heartlessness of the bottom line.
One month after starting Invirase, Bruce came to see me with a cough. He no longer needed a wheelchair but could walk arm in arm with his parents. His mother, despite her own illness, accompanied Bruce to every visit with me. Although she looked worn from chemotherapy and was beginning to lose her hair, she never complained to me about her health. Bruce didn’t always make it easy for her. A few days later a social worker from Horizon described Bruce as “angry and nasty and racist” after he hurled racial epithets at one of the health aides. That was the end of hospice services for Bruce.
Treating Bruce’s HIV infection during the next th
ree months was nerve wracking for me. A neurologist at Northwestern whom he consulted for his brain infection recommended higher doses of AZT, to levels that could cause significant side effects, because AZT had been shown to cross into the brain and ameliorate HIV-related neurological symptoms. Calling this good news, Bruce was ready to take AZT again, but he developed stomach pains, which prompted me to recommend increasing the dose slowly until he tolerated the standard dose. He decided to discontinue Invirase and start another newly approved protease inhibitor called Norvir, but since he was unable to swallow so many large capsules at once, he requested the liquid form, which smelled and tasted like motor oil. At his insistence, he stopped AZT and switched to two recently approved agents in the same class as AZT that could be combined with a protease inhibitor. A month later he complained that Norvir was rotting his teeth, which I thought unlikely in only four weeks. It also disturbed his sleep.
By this time Bruce had exasperated me. “Too bad,” I noted in frustration on a pink message slip that was later taped into a progress note on his chart. In such moments it was easy for me to focus on the personality of the man suffering from the disease but forget the disease itself. Terminal illnesses often bring out the worst in people, especially in the denial and anger phases. In this case it brought out the worst in both of us, and I struggled to keep my frustration from getting the better of me. When you’re fighting for your life, nothing is really irrational. It’s the equivalent of thrashing in the water to keep yourself from drowning. With each telephone call I paused, took a deep breath, and stepped back, repeatedly admonishing myself to be more patient with Bruce. On his request I switched him to yet a third approved protease inhibitor called Crixivan, but after one dose he developed what he described as extreme abdominal pain and gas. I convinced him to resume it, explaining that if he didn’t take his medications consistently or properly, he would die.
By mid-July he’d adapted to his three-drug regimen and never missed a dose. I was amazed at the astounding progress he’d made, despite his erratic course of treatment, since his hospitalization in January. He no longer needed a cane because his motor function had returned to near normal, and he could finally live alone without assistance. Unfortunately he lost his clerical job because in his weakened state he took too many breaks. If he’d been employed by a large corporation, he would have been eligible for benefits afforded by the Family Medical Leave Act (FMLA), which was designed to protect people with disabilities in the workplace, but Bruce worked for a small business owner whom the act exempted.
The brain infection, in any case, had altered his personality and impaired his intellect. No longer hostile and combative, he’d become docile and childlike, which further precluded him from holding a job. He became a regular visitor to our office, dropping by on any pretense to say hello, give me a hug, and chat with my staff. Far from being annoying, he was lovable, and my staff always welcomed him. As time passed it was difficult to remember how irritating he’d once been, but the “new” Bruce, zapped of ambition and completely dependent on the social safety net, saddened me. Still, his physical recovery was miraculous, a true medical success story.
Bruce wasn’t my only success. Scores of others were having remarkable responses to the new HIV treatment protocol. It was like watching a horror film in reverse: the knife flies out of the body and into the hand of the murderer, the splashes of blood are reabsorbed, the person rises Lazarus-like from his deathbed, flushes again with color, and resumes a normal or near normal life as if nothing momentous had happened. Large lymph nodes disappeared; a mouth and tongue speckled with white patches became pink and shiny again; rashes subsided; KS lesions faded and vanished without a trace; fevers and sweats ceased and pounds lost were regained; smiles returned to faces once creased with anguish and fear.
In the management of HIV infections, 1995 and 1996 were watershed years. By the end of 1996 we had five anti-AIDS drugs in one class (AZT, ddI, ddC, 3TC, d4T), one in a second (Viramune), and three in a third (Invirase, Norvir, and Crixivan). Just three years earlier most of us had despaired of controlling the infection. The word cure wasn’t even in our vocabularies, and the idea of remission was a fantasy. For several years the Treatment Action Group (TAG), an AIDS activist organization, had published an “Annual Drug Company Report Card” to evaluate the pharmaceutical industry’s inadequate response to the AIDS epidemic. Each company received grades for the speed of protocol development and overall drug discovery, responsiveness to community activists, innovation, pricing, and scope of effort. In 1993 most of the companies received Ds and Fs. I did not have an opportunity to view another report card from the group, but once the goal of effective therapies had been achieved TAG remained a gadfly, pressing for sustained research into the long-term effects of anti-HIV medications.
Most remarkably, activists and scientists had come together to pressure Big Pharma and the FDA to speed up clinical trials and pump out medications that promised to rein in HIV. I’d been skeptical about this policy initially, especially in the early days of HIV therapy. But now that scientists had arrived at an effective strategy to combat HIV with three-drug combinations, I was a supporter. Side effects be damned—no side effect was worse than death from AIDS. If 10, 20, or 30 percent of people taking these drugs suffered heart attacks or developed cancer as a result of treatment, that statistic would still pale in comparison to a death rate of 98 percent. Only rabies has a higher fatality rate than untreated HIV. No other infectious disease in human history has had the potential to kill a greater proportion of those exposed to it than HIV. One hundred or even fifty years ago, AIDS might have wiped out much of humanity.
Studies demonstrated that three-drug combinations—two from the first class and one from the second or third class—worked best in bringing the virus under control and preventing the development of resistance, especially in patients who’d never taken any HIV medications. The treatments appeared durable in the majority of people enrolled in trials. After almost a year, the combinations continued to suppress the virus, with improvement in immune system function and a reversal of the downward spiral in health. How long the treatments would work no one knew. People who’d developed resistance because of previous exposure to AZT, for example, alone or in ineffective two-drug combinations, didn’t fare as well as the patients who were “naive” to treatment. After a few months those people who were “pretreated” were at great risk of becoming resistant to the third drug too. Somehow Bruce maintained his sensitivity to the various drug combinations, perhaps because early on he never stayed on any medication long enough to develop resistance. Addressing that problem in less fortunate patients with more new drugs was a matter of great urgency, the next frontier in the war.
The results of studies with three-drug combinations were officially broadcast to the world at the International Conference on AIDS held in Vancouver, British Columbia, in July 1996. I was there and the news electrified me. For the first time I paid attention to most of the lectures, because the science of HIV had ceased to be theoretical and could now be applied to my practice. Before that, my mind would go numb and I would fidget and check my watch when a lecturer waxed on about some esoteric aspect of the immune system or a new discovery about the structure of the virus. Now I had the tools to make a good number of my patients better, like a surgeon in the nineteenth century who, after the invention of anesthesia, could operate without strapping down a screaming patient.
Although normally overcast and rainy, Vancouver that exciting week in July was sunny and mild, as if in climatological celebration of what we hoped would be the turning point in the AIDS epidemic. Rejoicing, Gavin and I rode bikes through that picturesque city. We made our way into some of the attractive neighborhoods before entering Stanley Park, pedaling along its scenic lake and shady paths and then proceeding to the city’s sandy beaches, where we battled the stiff wind blowing off the Pacific Ocean, our shirts billowing out and flapping like sails. We got as far as the Museum of Anthropology but tur
ned back because it was getting late, forgoing a chance to glimpse Wreck Beach, a gay nude hangout. We left Vancouver on a high note, eager to put our new knowledge to work.
Shortly after their release the various anti-HIV drug combinations were referred to as “cocktails.” Images of martini glasses or other containers filled to the brim with colorful capsules and tablets, or hands cupping multicolored pills of different shapes and sizes like rare jewels, began to appear in the press. Some patients were taking dozens of pills a day, when you included treatments to prevent opportunistic infections and vitamin supplements. One of my patients would take a handful, shove them into the back of this throat, and wash them down with a gulp of water without choking, demonstrating the benefits of a well-tempered gag reflex. Later the cocktails acquired a scientific nomenclature, highly active-anti-retroviral therapy, or HAART.
From studies of frozen blood samples stored in research centers around the world during the late 1970s and 1980s, we learned that people with the lowest baseline viral levels (or viral loads) appeared to progress more slowly toward AIDS and death than those with high viral loads. It was determined that, on average, it took ten years from time of infection to the development of AIDS. An uninfected person or one responding well to HAART would have no detectable virus; a person with a raging infection might have very high levels of virus. The curve was bell-shaped, with a minority dying within a year or two of infection or twenty years later. Imagine a train moving from point A to B, where B is AIDS or death. The CD4 count, a reflection of the state of the immune system, tells you how far you are from that destination; the viral load tells you how fast you’re moving toward it. The lower the CD4 count, the closer you are to developing full-blown AIDS. The higher the viral load, the faster you’ll get there.
Plague Years Page 20
