The Wall Street Journal - Thursday, 3 October 1996
Barbara Carton, Staff Reporter of The Wall Street Journal

Almost every other week, the local Unitarian-Universalist church has a funeral for yet another AIDS victim. Other towns have their war memorials. "Ptown" -- which grew into a popular gay resort in the 1970s, and where now one of every 15 residents suffers from the disease -- has its leather-bound "Great Book" of AIDS dead. The latest count is 393.

But drastic changes are underway here, thanks to the seemingly miraculous arrival of protease inhibitors. The new class of drugs, when used in combination with a set of older antiviral medicines, raise the remarkable hope of reducing AIDS to a chronic but controllable illness like diabetes, as opposed to a likely death sentence within 10 years. Some doctors believe that the drugs, which block an enzyme crucial to the life cycle of the human immune deficiency virus, may help prolong a patient's life by 20 years or more.

Now, a community that had become so accustomed to death is grappling with the implications of this new lease on life. There is elation, of course. But not far behind is an unexpected ambiguity, anxiety, even dread.

"In my support group, we joke about, `Well, if we're not going to die, do we have to go back to work? Do we have to resume a career?,'" says 50-year-old sculptor Pasquale Natale, who like so many other AIDS patients here has seen his health rebound in recent months thanks to the new drugs. "Does this mean our life is going to change drastically now?"

The arrival of protease inhibitors has brought significant shifts in the roles of Provincetown's AIDS-care providers. Since the drugs became widely available six months ago, Susan Stinson, a nurse at Outer Cape Health Services Inc., has had no time for her usual case-management work. Instead, she spends her days advising HIV-positive clients how to pay for the therapies, which can total $16,000 a year.

"My job has changed 180-degrees from what it was," says Ms. Stinson, who has watched the number of AIDS patients seeking help from the clinic jump 20% to 250 since the drugs came on the market. About 100 patients are uninsured or underinsured, and Ms. Stinson tells them about various subsidy programs run by the state, Medicaid and pharmaceuticals firms.

The clinic finished the 1996 fiscal year in August with a $50,000 deficit, due in part to the surge of patients, Executive Director Scott Penn says. Mr. Penn has asked federal and state funding sources for an extra $125,000, to supplement the $407,000 he received last year to help care for HIV-infected patients. But he isn't sure that is enough. He frets that his staff -- three doctors and three nurses -- is overworked and underpaid. No one has had a raise in a year.

"It's a real significant worry," says Dr. Leonard Alberts, who sees as many as 20 patients a day and has become a self-described "foodaholic" because of the stress. He says researchers who design these new drugs "don't have a clue as to the economics. They're not the people who are sitting here in a marginal operation where making payroll is the first battle."

Though protease inhibitors seem to be working wonders for some, not everyone can benefit. Because the AIDS virus mutates so quickly, doctors concede that the new treatment may not be a permanent solution. Dr. Alberts's own companion is housebound and too ravaged by AIDS to handle the side effects of protease inhibitors, which include nausea and diarrhea. "It's one of the ironies of life," the doctor says.

Karin Anderson, who leads a weekly support group in Provincetown for people taking care of friends or partners with AIDS, says her seven-member group is becoming increasingly polarized. That is because the protease inhibitors are working for half the patients, but the rest are getting much sicker. The social worker says she may eventually have to split the support group in two.

The new drugs are putting strains on this town in other ways. It has been a grim fact of life here that AIDS deaths made room for newcomers needing assistance. Today, the federally subsidized 10-bed house for low-income AIDS patients has eight on its waiting list; 60 names are on the waiting list for rental assistance from the Provincetown AIDS Support Group. Both are expected to grow.

Meantime, with almost no buildable land left in town, housing prices are rising. A three-bedroom house that sold for $110,000 at the last market peak in 1989 is selling for about $125,000 today.

The economic incentive for landlords here to rent cheaply during the winter and expensively during the summer is powerful. Since many HIV-positive patients are on limited disability incomes, they often wind up spending summers on friends' couches or rolling up in sleeping bags in the dunes. As more men begin living longer, the situation is expected to worsen.

"It's a scary subject," says Shana McMahan, the AIDS support group's housing advocate. "A lot of people came here because they wanted to be in a supportive community of HIV-positive people. But we had a finite amount of people, a kind of revolving community because of the deaths. And now it's looking much different. A lot of people are living much longer than they thought they were going to. What are they going to do now? Are they going to stay in Provincetown?"

And if they stay, what will they do?

Provincetown already suffers from a 30% average unemployment rate over the year. Significant growth in the local economy is unlikely. The number of galleries, restaurants and inns has remained steady over the past five years, and under the town's strict development plan it would be next to impossible to add more.

Many patients here survive on disability payments or make marginal livings as waiters, artists or housekeepers. The cash-based tourist economy is a major draw: they can supplement their disability income working odd jobs, often for under-the-table wages.

But no one quite knows what will happen if scores of men become healthy enough to re-enter the work force full time.

"People are missing the boat in not designing programs for the long-term survivor with HIV," says Alice Foley, the town's former nurse, who is now retired. "You've got to mainstream them back into a working environment. . . . A lot of these guys haven't worked in eight or ten years." The Boston-based AIDS Housing Corp., which serves Provincetown, says it is trying to modify an existing $196,000 federal Department of Housing and Urban Development grant so it can offer job training.

Yet plenty of those with AIDS here say they don't want to return to work. Some look back on their previous 9-to-5 lives as vastly unfulfilling. Many more say they are scared to embark on new careers, for fear of jeopardizing their disability benefits and, therefore, access to the drugs that keep them healthy.

Richard Wetherell, 41, a former National Marine Fisheries Service navigation officer who retired here two years ago, says he considered leaving and studying admiralty law, but quickly abandoned the idea. Medicaid and federal insurance pay for 100% of his AIDS drugs, and he was concerned he wouldn't find a job with a health plan that would cover all his costs. He could take a part-time job, but under federal disability guidelines he is only allowed to make up to 80% of his old salary without risking his pension, which scotches the idea of a real career.

So, despite feeling better -- he bikes daily and roller skates -- he remains unemployed. "I could probably get a bag-boy job at the Stop & Shop," he says with resignation.

Others well enough to return to the job market are packing up and leaving, robbing the town of some of its most respected citizens. Douglas Brooks, 33, raised more than $350,000 as development director for the Provincetown AIDS Support Group. Now, five years after moving here to die, and feeling great on the new drugs, he is returning to Atlanta and hoping to apply to graduate school to study social work.

"I didn't plan for this at all," says Mr. Brooks, who admits to squandering a "sizable" inheritance on gourmet dinners and Absolut vodka after discovering he had HIV. "I spent every penny thinking, `OK, I've got insurance, I've got family and friends who'll be there to supplement disability to get me through whatever illness until death.' And now I realize I'm not sick and nobody's going to be giving me any money," he says.

"The prospect of living is very exciting," says Marc Paige, a gay-rights activist who is disabled from the disease. "But it's also daunting because the pressures of life lay before you."

A month ago, Rob Larabee was convinced he would soon die of AIDS. The 41-year-old former hairdresser arranged for a hillside burial plot in Vermont and told his partner of 14 years, Yves Morrissette, which tune to play at the funeral ("Don't Cry" by pop singer Seal). Now, in light of news that he might live, Mr. Larabee says his biggest worry is that Mr. Morrissette, who is HIV-negative, will leave him.

"I've put him through a lot," Mr. Larabee says. "Yves has financially taken care of me, and I should see if he wants to part ways now. Maybe it's something he's feeling and he's just not telling me." Mr. Morrisette, 33, a chef, says he is committed.

The promise of protease inhibitors has clearly brought a new energy to this former fishing village. Throngs of young men skate along the boardwalk in tight, brightly colored shorts. Laughter pours into the street from the Atlantic House bar, which advertises a costume party with the motto, "So Many Men, So Little Time." Ministers deliver sermons with titles like, "Is God Gay?" AIDS educators swoop down on unsuspecting tourists and perform a stand-up comedy routine, pretending to be flight attendants for "Cape Sodom Air" with condoms falling from overhead compartments.

But some worry that the new elation may lead to a sexual recklessness.

"You hear talk, this big sigh of relief, `It's over, things are getting better, let's forget safe sex, let's throw caution to the wind, let's just live,'" says William Clark, AIDS minister at the Unitarian-Universalist Meeting House, where half the congregation is infected. Agrees Leonard Stewart, executive director of the Provincetown AIDS Support Group: "People are exhausted of being careful."

Alan Mayer, 33, tested positive for HIV in 1995 after discovering that a partner had lied about his status. At the time, Mr. Mayer couldn't fathom how someone could have done that to him. Now, since going on the protease inhibitors in April and feeling almost back to normal, Mr. Mayer, a Boston architect and Provincetown visitor, understands the temptation not to tell -- even though he always does.

"Before I was on the medication," he says, "it was impossible to forget I was positive, and I spent most of my time managing being positive. Since it's now under control and I don't have to think about it day and night, for the first time it's possible to forget. And it's so tempting."

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