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Back to a Future: One Man 's AIDS Tale Shows How Quickly Epidemic Has Turned

Last Year This Editor Wrote His Own Obituary; Now, He Writes of Surviving
---When It Was Called `GRID'

By David Sanford
The Wall Street Journal

One year ago today, I told my colleagues that I was dying of AIDS. I had been fighting it for years -- the illness and the telling.

I had been taking AZT, and briefly even a drug given to lepers. But now I was gaunt, tired and rather sure I was losing the battle. I gave my boss an obituary I had written -- I'm a features editor on Page One of The Wall Street Journal, so I certainly didn't want anybody else writing it -- sent a note to my boss's boss and started saying my goodbyes.

Last week, my doctor, Jerome E. Groopman, noticed that I am getting fat and said it wouldn't be a bad idea if I went on a modest diet. At age 53, I am going to the gym again. I need to buy some new clothes. I am planning to one day retire with my partner of 28 years, who is HIV-negative.

What has happened in the past year, at least for me, is a miracle that couldn't have taken place at any other moment. The year 1996 is when everything changed, and very quickly, for people with AIDS. I have been grappling with this disease for nearly a decade and a half, almost since the beginning, when it was called Gay Related Immune Deficiency, or GRID. I've outlived friends and peers, and now I find myself in the unusual position of telling people how I've survived this scourge, something I never thought would happen. My condition could change for the worse tomorrow. But today I feel well again.

Thanks to the arrival of the new drugs called protease inhibitors, I am probably more likely to be hit by a truck than to die of AIDS. In coming alive again, I've learned the value of a good doctor and good friends -- and the importance of being honest with yourself, your co-workers and the people you love.

My battle with AIDS, I'm certain, began in December 1982, at a bathhouse in Manhattan's East Village during a sexual encounter with a man whose name I didn't catch. Like other gay men, I had kept up with newspaper reports, beginning with a July 3, 1981, New York Times story with the fateful headline: "Rare Cancer Seen in 41 Homosexuals." Nevertheless, going to the baths was a big part of gay culture back then, and here I was. Old habits die hard.

At the time, the federal Centers for Disease Control and medical authorities were saying little about this being an infectious disease. Indeed, they at first thought it probably wasn't. But it was pretty clear that GRID was caused either by the cumulative effects of too much sex (so many men, so many germs) or too much butyl nitrite (poppers), a sexual stimulant sniffed from little vials available for $5 at newsstands. The third possibility was that it was a sex-borne plague.

A week or two after that encounter, I came down with the strangest flu. It had the usual aches and respiratory symptoms, but also a high fever and a rash. It lasted for a couple of weeks at Christmas when my partner, Lewis, and I were in Denver visiting my mother, just two weeks before she died. I have since learned that when people become infected with the human immunodeficiency virus, they often have such an illness.

It was on this visit that my mother asked us over dinner one night whether we had seen a TV documentary about "the disease a lot of people in New York are getting." "Homosexual" was a word I never heard from my mother, and I didn't utter it around her. Sex wasn't anything we talked about. I had been living with the same man for more than 14 years, and my mother, who was perfectly accepting of our relationship -- a marriage in every sense but the legal one -- was still hoping for grandchildren from her only child.

Yes, we told her, we had seen the program. End of discussion. I didn't volunteer that I thought I myself might have recently been infected. My New Year's resolution was to become as chaste as a priest is supposed to be, and I did. I was determined not to get infected if I wasn't already, and I didn't want to infect anybody else.

But the signs were there. I tired easily. On a trip to Japan in 1984, I had the first of recurring night sweats, which can be a sign of infection. When I dieted, I would drop weight quickly -- 48 pounds in one four-month period.

When the HIV blood test finally became available in 1985, I wasn't interested in opening Pandora's Box. There wasn't anything you could do for HIV then anyway.

It wasn't until 1989 that researchers reported that HIV-positive people -- and not just patients with full-blown AIDS -- might benefit from the drug AZT. Now there was a good reason to be tested.

I got the news on Sept. 22, 1989, when a woman named Bea at the New York City public-health clinic on Ninth Avenue told me I was HIV-positive. I have always been health-conscious. (Lewis said to me recently: "You are the answer to the question `Can you have AIDS and be a hypochondriac?'") But at that moment I suddenly stopped worrying about twinges, radon and asbestosis and focused squarely on dying of AIDS. Bea, who knew me as a code number, said to comfort me: "If I considered this a death sentence, I couldn't do this work." She told me to go to my doctor and get on AZT.

I wasn't surprised by the test result, but I was upset. I'm not a crier, but I cried. I took a taxi from the clinic to the Journal and proceeded to sleepwalk through the day. That morning, I attended a meeting to talk about a series of articles on public schools. My only thought as I sat silently through the discussion was, "What do I care? I'm dying."

I didn't know whether I would ever care about anything again, except that I was worried about Lewis, and I felt strongly that I didn't want to endure some long, terrible final illness.

Because my helper T-cell count (T4 lymphocytes) was 457, well above 200, which represents clinical AIDS, my doctor didn't recommend that I do anything but monitor the situation with blood tests every three months.

The first year that I knew myself to be HIV-positive was the last year of my friend David Coon's life. He had been the back-of-the-house manager at the Odeon, a restaurant I liked in lower Manhattan. He gave me good tables. I bought him a subscription to The Wall Street Journal.

Lewis and I had more than one Thanksgiving dinner at the Odeon, with David working, and we became friends. Late in 1989, he lost 35 pounds and was hospitalized with what Keith Younger, a gay waiter who worked with him, told us was "a bad case of toxo" -- toxoplasmosis, a parasitic infection contracted from cat litter that can cause encephalitis.

Once out of the hospital, David said nothing of AIDS, but claimed he was found to be lactose intolerant. That was why he lost all the weight, he said.

The last time I saw David was the following summer at his apartment on Second Avenue. He had been in and out of the hospital, complaining that "there were too many people dying" around him. "It's an AIDS ward," he said. He was blind in one eye. He was being fed intravenously. He had 24-hour nursing at home. He was having to sell his weekend house. I told myself I would commit suicide before I let anything like this happen to me.

That December, I got a refund from The Wall Street Journal for the remainder of David's subscription. Someone had canceled it. I called to see if he was OK. I asked his nurse Roberta Montuori whether I could speak with him. "You can talk to him," she replied, "but I don't think he will be able to talk to you." She gave him the phone. I spoke. He made excited animal sounds that were nothing like words. Two days later, he spit out his medicine and died. Two months later, Keith was dead, too.

I wasn't even going to think of dying in such misery. I retreated into bookkeeping. According to the Kuder Preference Record, an aptitude test I took in school, my interests pointed toward a career as a certified public accountant. Fortunately I became a reporter instead, a writer and managing editor of the New Republic for 11 years in the '60s and '70s, then managing editor of Harper's magazine in 1979 and 1980.

But with my bent for accounting, and a Swedish fatalism I picked up from my mother and immigrant grandparents, I started getting my affairs in order -- revising my will, withdrawing the voluntary contributions I had made to the profit-sharing retirement plan of Dow Jones & Co., which owns The Wall Street Journal (so I could spend the money), and making lists of insurance policies.

The other thing I did was to embark on a campaign of deception.

My doctor suggested I not file for insurance reimbursement for my regular T-cell tests, which I had every three months and which were costing about $150. "You can afford it," he said, knowing nothing about my financial health. The lab test was a tip-off, he said: "Even though these things are supposed to be confidential, employers have a way of finding out."

I wasn't afraid that The Wall Street Journal would fire me for being HIV positive. The company had been good to employees with serious medical conditions, including the two people I knew of who had died of AIDS.

But 1989 was a world away from 1996 in the way Americans felt about AIDS and, particularly, about the routes of contagion. I didn't want to tell anyone I was infected and thereby change forever the quality of my relationships.

Lewis and I didn't have a gay social set. Most of our friends are married couples with children. And though I was discreet about my homosexuality, Lewis and I are a couple, and I figured people knew I was gay, if only because I had written an op-ed piece for the Journal Aug. 29, 1985, titled "Need We Guess Why Young Men Are Dying?" In it, I questioned why in a year of reading obituaries and classified death-notices in the New York Times, I could find only four listing AIDS as the cause of death. Back then, young unmarried men in the obituaries died of pneumonia, leukemia, meningitis and lymphoma, or "after a long illness," but rarely of AIDS.

I crossed the threshold into AIDS itself on Oct. 15, 1991, when my T cells fell to 198. At that point, my doctor recommended I start taking AZT, 100 milligrams, five times a day. He also prescribed a drug I had never heard of called Dapsone. I went home, looked it up in my Physicians' Desk Reference and learned that its primary use was in the treatment of leprosy.

Just filling the prescriptions took guts I nearly couldn't muster. I was as embarrassed as a teenager buying condoms. I watched the pharmacy clerk read the prescription, then glance up at me. That was an intimacy I didn't want. "Would you like counseling from the pharmacist?" he asked. I did not; I wanted to get out of there.

I also didn't want to take the medicines. Definitely not a drug for lepers. And not AZT, which had potentially bad side effects, including liver damage. I took the pills for five days and quit.

Lewis and I had always thought we would grow old together, and now it looked as if I was going to be bailing out. Together we prepared for my decline and how the two of us would get through it. My bookkeeping proclivities had me signing and notarizing a living will, a limited power of attorney for health care, and a general power of attorney. I arranged for my cremation with the Neptune Society. I wanted to be sure that if I got very sick, Lewis would have the authority to pull the plug.

I told my doctor I wanted to be treated in the most minimal way, that I wanted no heroic attempts to prolong my life if I were to become terribly ill. He said that even if I chose not to take the Glaxo Wellcome drug AZT, and had no appetite for the Jacobus Pharmaceutical drug Dapsone, I should be taking a generic version of double-strength Bactrim, an antibacterial drug that staves off Pneumocystis carinii pneumonia.

I wasn't accustomed to ignoring the advice of doctors, and I decided to be a good boy and take my medicine, joylessly. I started with a daily dose of Bactrim on Feb. 22, 1992. I went back to AZT on May 22. At first, I thought AZT ruined the taste of food, but I have never missed a dose. I would have been more enthusiastic had the doctor really believed in it. Does it do any good? I asked. "Maybe some, probably not a lot. Nothing does much good," he said.

I thus began a long slow slide in immune function, measuring out my life in 12-week increments between blood tests. My T-cell results trended down, culminating in a count of 138 on Sept. 27 last year. We tried adding to the mix the antiretroviral drug Videx (DDI), made by Bristol-Myers Squibb. Taking it made a drink of alcohol feel like a kick in the stomach. I went on the wagon and wondered what vices I had left to give up.

By November, I was sad and defeated. I weighed 161 pounds. I am 6-feet-2-inches tall, and, naked in a mirror, I could see how emaciated I was. I was exhausted at the end of the day, and I was feeling that life consisted of taking pills, going to work, sleeping very long hours and going to work again. The routines of daily living had become a burden.

Over the years, I had observed in my doctor's office and on Christopher Street -- the center of a largely gay neighborhood in Manhattan -- men walking with canes, men with sunken temples, wispy hair and sadness in their eyes. I would often encounter one of these sad men and exchange knowing looks. I knew they had AIDS and I believed they could tell I did, too. Nothing needed to be said.

My friends, it turns out, swear they couldn't see it and didn't know I was sick, though people were saying "How are you?" in a particularly earnest, heartfelt way.

It seemed that all that remained was to wait for some opportunistic horror to kill me, and I thought it would happen in 1996. I had had my first AIDS-related infection, thrush, a kind of athlete's foot of the mouth that is readily cured by a costly Pfizer drug called Diflucan.

I asked my doctor's partner, who diagnosed the thrush, whether it meant my immune system had gone over a cliff. He said no, it didn't. But I felt that now was the time to do something.

The something I decided to do was to tell my boss, John Brecher, the Page One editor, and Paul Steiger, the managing editor of the Journal, that I had AIDS. I could see the slide I was on, and I didn't want to have to lie about workdays missed and possible hospitalizations. Besides, I assumed that because I was so haggard they must already know.

Remembering what my doctor had said, I was also sure that they had heard all about it from our group insurer. For a while I did pay for my T-lymphocyte subset tests myself. But when I began taking AZT, I started to file for everything, and last November I told my doctor to begin writing AIDS -- not "viral infection" -- as the diagnosis on insurance forms. Call it another step in my coming-out process.

I wrote a difficult letter to John and to Paul. "I need to tell you this directly. I have AIDS," I wrote. "I do not know how long I have to live, and I am ripe for AIDS-related diseases. But I would like to continue working on Page One as long as I am making a contribution and am trusted to do good work." I concluded it: "This is a bummer, I realize, and I am sorry to add it to your burdens."

No, it turned out, they hadn't suspected I had AIDS. Yes, I could go on working. Both men offered carte blanche assistance: "If you need anything at all, let us know." They used about the same words.

I asked Paul if he thought it would be a good idea to send out an "all-cities" memo to the newspaper's bureaus that I had drafted for his signature. Paul didn't merely edit and sign my draft, he attributed it to me and added this in his own words: "I know you will join me in sending David our deep love and high respect, in affirming his enormous contributions and continuing value to this newspaper -- and in wishing him many more happy years here." The memo went out Nov. 8. I thought of it as a death notice, but it turns out to have been more of a rebirth announcement.

For the next month, I was utterly unable to do my job because I spent the days talking to callers and speaking to friends at work. The cards and letters poured forth. The experience was a lot like attending my own memorial service, something I have always wished I could do. I hadn't truly expected the hugs and the tears and the rest -- even the laughs. I was consoling people who were trying to console me. I had already gone through all the stages of mourning for myself.

I also sent out my first-ever personalized Christmas letter to tell friends and relatives, some of whom I hadn't seen for 20 years. Lewis, who sees clearly, warned me not to become a poster boy for AIDS, and I knew that sending health bulletins far and wide was to invite every conceivable reaction. I did expect to see some sign of disapproval, but there really wasn't any, certainly no outright hostility. A cousin in Denver did start sending me religious tracts -- and a Billy Graham tape.

One of my holiday letters went to Martin Peretz, editor in chief of the New Republic. I hadn't seen him in the 19 years since I left the magazine, but time hadn't diminished our friendship, and I wanted him to know what I was telling everybody but the deli man on the corner. The letter to him changed my life. Marty called me immediately. He said his friend Jerry Groopman, who practices medicine in Boston, "treats AIDS very aggressively." I really ought to see him.

Marty said he would be glad to make the introductions. He called me again to say that Jerry could see me in three days.

It was too soon for me. I was happily dying -- and about to go on a Mexican vacation. I felt I had made my peace with death and, in a way, was looking forward to it. I had blown my mother's estate, about $180,000, on living for the moment, eating in the best restaurants and taking three or four foreign vacations a year. There was no time to lose, and I was determined to go out in style.

Did I now want my AIDS to be approached aggressively? I wasn't sure. But I decided to make an appointment, and on Jan. 23, I flew to Boston.

Marty had told me a story about Dr. Groopman. They were at temple, and during the misha berach, the prayer for the sick, Jerry was reading off a list of his patients. When everybody else had finished praying, Jerry was still reciting his list. Marty later asked him about it: "Jerry, but you are a man of science." The doctor replied, "Yes, but I am also a Jew."

Jerry confirms that the conversation took place. He is a wonderful mixture of scientific expertise and religious faith. He has been treating AIDS patients since 1980, before anyone even knew the meaning of the pneumonia and Kaposi's sarcoma he was encountering as a 28-year-old doctor at the University of California at Los Angeles. The 6-foot-6-inch gray-bearded Harvard professor also juggles his time among his wife, Pam, and three children; a book he is writing; and the patients he sees as chief of experimental medicine at Beth Israel Deaconess Medical Center.

The day I met him was one of the most important days of my life. His secretary, Youngsun Jung, had asked me to scavenge what medical records I could and bring them with me. I had graphed all my T4 numbers, the results of 19 blood tests between Sept. 11, 1989, and Jan. 3, 1996. The high was 580 on April 19, 1990. The low, on Sept. 27, 1995, was 138. The numbers bumped around, but after January 1991 the trend was gently downward.

Jerry ("Only my mother calls me Dr.") Groopman, 44, took my medical history and said it appeared I had a very weak strain of the AIDS virus. I wasn't in as bad shape as I thought. He was very optimistic that my life could be prolonged by the Roche drug Invirase, a protease inhibitor that had been approved by the Food and Drug Administration just the month before. He said I should take it in combination with AZT and the Glaxo Wellcome drug Epivir (3TC), a "nucleoside" in the same class as AZT.

He was equally reassuring when he moved on to the physical examination. I was skinny, but I wasn't wasting. My muscle tone was fine. Looking at my tongue, he said, "You've got thrush again." I should be taking 100 mg of Diflucan prophylactically every day, he said.

I filled the prescriptions in Boston and popped my first pills on the Delta shuttle back home. There were so many pills. Generic Bactrim (SMX-TMP) and Diflucan every morning. Three capsules of Invirase three times a day, AZT five times a day, Epivir twice a day.

It would be some kind of yuppie whine to complain about how burdensome it is to swallow a lot of pills on a complicated schedule, particularly if they keep you healthy. It isn't all that difficult. But you can plan a slow day entirely around taking medicine. Each of the drugs comes with a long list of possible nasty side effects, ranging from liver and kidney damage to pancreatitis and neuropathy in the limbs. So far, I have experienced none of that.

My next big problem was what to do about my doctor in New York. On Feb. 7, I told him I had been given a chance to see Jerome Groopman at Harvard. "Do it," he said, recognizing the name. "I've already done it," I replied. "Good. What did he say?" The doctor agreed to follow Jerry's regimen, but warned: "Nobody knows what harm these drugs are going to do to your body or how long they will keep you alive."

Invirase was put on the market in December after 26 weeks of clinical trials that had such heartening results it got the quickest FDA approval of any new medication in history. (The record was broken in March by the other two protease inhibitors currently on the market, the Abbott drug Norvir and Merck's Crixivan). Who knew what would happen to patients after a year or two?

Dr. Groopman, who agreed to become my "primary-care provider," uses his own sophisticated "viral-load" test that counts viral RNA in a milliliter of blood down to 100 viral units. Below that is considered undetectable. The more AIDS virus one has coursing through his or her veins, the greater the likelihood of AIDS-related disease.

My very first viral-load test, taken before I went on Invirase, was only 5,795, which is very low, even with treatment. A viral load of 5,000 is correlated with a 100% chance of surviving five years; at 100,000, you are in bad shape.

I stopped the presses on my obituary. After several weeks on the new therapy, I also started feeling well, better than I had in 10 years. I started gaining weight, 25 pounds to date. I no longer was fading.

Oddly enough, the return from my near-death experience was at first very annoying. I had a few adjustments to make. I had to start thinking again about my bills. Lewis and I had salted all the money we could into a co-op apartment and untouchable retirement accounts, and with my mother's money running out, we now had to start living within our means. My life-insurance benefits weren't heading his way as soon as I had reckoned. Enough money was coming in from our respective jobs to pay bills, but there was no discretionary income to speak of.

Fortunately, my work is fulfilling, so I didn't need to reconsider my ambitions. But I have had to re-energize myself for the daily grind. I'm even thinking about cleaning the basement.

But I'm not out of the woods. This treatment needs monitoring. My second viral-load test, after a month on Invirase and the other drugs, was 470, a spectacular decrease. But my third and fourth tests taken 10 weeks apart showed increases in viral load, to 1,000, then to 2,000. The number was still low but headed in the wrong direction.

On June 26, Jerry doubled the Invirase to 3,600 mg a day (18 big yellow and green capsules). In August, he added the just-approved Roxane Laboratories drug Viramune, which is like AZT and 3TC but different; it is a "nonnucleoside." In September, Jerry took me off AZT, which may have played itself out after four years, and substituted the Bristol-Myers Squibb drug Zerit (D4T), another drug in the same class. The viral load on Sept. 3 had come down to 600. "An A+," Jerry said.

The battle plan has been to move to Norvir or Crixivan if the AIDS virus is still detectable. I won't get my Oct. 29 results until next week. The goal is to get the viral load down to a level that can't be measured, so as to reduce the likelihood that the virus will mutate into a drug-resistant form.

Perhaps the best news I've had is that my T4 cells rose over six tests from 157 to 292. The new drug "cocktails" haven't been resoundingly successful in raising the T4 counts of patients with truly devastated immune systems, even when viral loads decrease. But 292 is a level that can probably sustain me.

Some HIV-negative men are guilt-ridden that they aren't infected when they see so many of their friends dying. I feel guilty that I am getting the best possible medical care, because it is unavailable to most of the world's AIDS sufferers, and to the poor and uninsured in this country. According to the CDC, as of June 30, 343,000 people in the U.S. have died of AIDS. The agency estimates that as many as 900,000 are infected. About 100,000 are taking protease inhibitors.

My prescriptions for the year ended May 31, 1996, cost Dow Jones $7,634.06. Next year the bill will be higher.

Last week, on my sixth visit to Dr. Groopman's office in Boston, I had an hour to kill in his waiting room to read an issue of Poz -- a magazine for the HIV-positive -- and to watch eight or 10 other AIDS patients coming and going. The extraordinary thing about the scene was that everyone was smiling, almost constantly.

People in doctors' offices had always struck me as bored or frightened. These men bantered with Nancy Leary, the secretary, smiling all the while. The fellow sitting nearest me stepped to the desk to speak animatedly on the phone about his Crixivan prescription.

Ten months ago, he was skeletal. He had an infection and his doctor believed he had weeks to live. Now, thanks to Crixivan, his viral load is too low to count, and he looks like the professional model he once was, handsome and healthy. To see him, you would have no idea he has AIDS or, as he said, that "this has been going on for about 10 years." I told him that I believe I was infected in 1982. "You're lucky," he said. Most people infected that long ago are dead."

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