Aids: A Grimmer Picture Than In The MovieJoseph Weber
I was bruised and battered; I couldn't tell what I felt.
I was unrecognizable to myself.
Saw my reflection in a window and didn't know my own face. Oh, brother, are you gonna leave me uastin' away on the streets of Philadelphia?
-- Bruce Springsteen
So far, David L. Szumski's bruises aren't obvious. Unless he tells you about the Kaposi's sarcoma on his left leg--a pea-size purplish lesion--you wouldn't have a clue the 6-foot, 3-inch, 225-pound management trainer has AIDS. He scuba-dives in tropical waters, works full-time for a Philadelphia-area retailing chain, and spends weekends toiling on his suburban house. All in all, he takes good care of himself and his body.
Still, unless Szumski beats the odds, he will be dead before he reaches his 35th birthday, five years from now. In 1987, he learned he was infected with HIV, the virus that causes AIDS. A year ago, with the appearance of the KS lesion, the diagnosis was upgraded to AIDS.
OSTRACISM. In some ways, Szumski resembles Andrew Beckett, the fictional lawyer portrayed by Oscar winner Tom Hanks in the movie Philadelphia. But director Jonathan Demme's film doesn't completely capture the real-life experiences of Philadelphians with AIDS or HIV. To see for myself what AIDS in Philly means, I spent time with infected people, doctors, and workers in some of the city's social agencies. What emerges is a picture sadder and more disturbing than Hollywood's.
For one thing, the ostracism that people with AIDS face can be far more subtle than that of the ham-handed Main Liners in Beckett's fictional law firm. Szumski's bosses have been supportive: They're not afraid to work closely with him. He expects to keep on working as long as he is physically able. Even so, he was advised not to allow his company's name to be published in BUSINESS WEEK, for fear the general public might not be so tolerant.
Despite the knowledge that casual contact cannot transmit the disease, AIDS remains a terrifying and isolating plague. Once, it was pretty much confined to gay white men. Today, people who resemble fictional lawyer Beckett account for fewer than half the new cases in Philadelphia.
Last year, African Americans, both straight and gay, accounted for 59.8% of the 1,914 new cases. And 308 women--16% of all new cases--were diagnosed with AIDS. Unprotected heterosexual relations and the sharing of contaminated drug needles are growing means of disease transmission. "We call it the degaying of AIDS," says David Fair, an activist who heads We the People Living with AIDS/HIV, a private relief agency.
LOST SOULS. At Fair's center, in a restored apartment building on the rundown south edge of downtown, Hollywood's upscale picture of the plague seems faraway. Few of Fair's 3,800 member-clients could even afford to see the movie. Many of them seem to be lost souls, homeless people, drug addicts--"the kind of people you cross the street to avoid," says Fair. The center helps them find food, housing, job training, and emergency medical care. Fair faults Philadelphia as unrepresentative. "It was a great picture of the AIDS epidemic in 1982," he says. "It has nothing to do with the AIDS epidemic in Philadelphia today."
Some Philadelphia gays fault the movie for failing to depict the isolation that many with AIDS still suffer at home. To many of them, the caring family that embraces Andrew Beckett is as unreal and fantastic as the Coneheads. True, lots of families do line up behind their loved ones. Too often, however, the person dying from AIDS is shunned--even on the deathbed. One AIDS-stricken Philadelphian tells of a friend whose parents disowned him. At his death, his mother angrily threw friends out of the hospital room and ordered his body disposed of without a funeral. "It was no longer her son," says the friend. "She was just fulfilling some legal duty."
Ostracism remains a fear even in enlightened circles. One Philly university professor with AIDS, for instance, isn't worried about being fired but frets that students might shun his classes. A federal employee who speaks about his ailment at American Red Cross programs in high schools insists on anonymity, because he can't risk losing health benefits in the event he is fired.
Enraged at the ostracism and driven to push for a cure, some Philadelphians with AIDS are throwing themselves wholeheartedly into activism. The city boasts a nationally known library, the AIDS Information Network, where news of the latest treatments, research, and political developments is catalogued and distributed. A bimonthly Philly newsletter, the Critical Path AIDS Project, reaches 8,500 readers nationwide. And on Apr. 30, AIDS activists from around the country are gathering in the city for a conference on the disease at space donated by one of the city's hospitals. Some activists say that Quaker-influenced Philly is a model of cooperation compared with other cities, with doctors freely referring patients back and forth and people making information on drug trials readily available.
Fighting the disease is a truly herculean matter. People with AIDS may take dozens of pills daily to treat or stave off infections, perhaps spending more than $1,000 a month on medicines--an impossible sum for uninsured people. A common flu bug that a healthy person shakes in a day or two might necessitate hospitalization to someone with AIDS. Infusion therapy can immobilize an AIDS patient twice a day for up to three hours at a time. "People have no idea what it's really like for them," says Joseph P. Ondercin, a physician's assistant who treats HIV-infected people.
PROLONGED PAIN. Even health-care workers are overwhelmed. For the handful of physicians in Philadelphia who specialize in the HIV-infected, death is the depressingly inevitable prognosis. "You're looking at 300 dead people," Ondercin says, pointing to a floor-to-ceiling rack of files in his Graduate Hospital conference room. Dr. Ian Frank of the Hospital of the University of Pennsylvania has seen more than 100 patients die, many in prolonged pain. "There are no other medical subspecialties where you deal with as many young people dying at this rate," says Frank. "It's unusual in medicine to have patients your age or younger dying--when you're 39. It's very sobering."
Sadly, the death tolls will only mount. Of at least 7,944 reported AIDS cases in the Delaware Valley since 1981, 4,415 have been fatal. There are at least 24,000 cases of HIV infection in the area--out of 1 million to 1.5 million nationally--and they almost certainly will develop into AIDS over time. Topping 204,000, the national death toll exceeds the number of Americans killed in the Korean War and Vietnam combined. Indeed, activists compare this generation to World War I, where the death counts rose to touch everyone somehow. But in this war, there are no gold stars displayed in parlor windows. Instead, the activists say, mainstream America still regards those with AIDS as "disposable" people, better off gone.
Despite the bleak outlook, hope remains. But activists can't understand why promising treatments are stalled by red tape. For instance, until a year ago, several dozen patients in Philadelphia were showing modest gains taking an experimental Jonas Salk vaccine, and more than 900 additional Philadelphians had volunteered for further tests of the drug. Now, however, the vaccine is tied up in a squabble between manufacturer Rhone-Poulenc Rorer (RPR), based in nearby Collegeville, Pa., and the Food & Drug Administration--with the company laboring to satisfy the agency's questions about the drug's safety. For the patients, such safety questions seem Kafkaesque, since they'll almost certainly die without the medicine anyway. Separately, the activists are dismayed at a turf war between RPR and partner Immune Response Corp. in California over who controls the drug trials, a dispute that they fear could delay the medicine still further. The two companies insist they want to continue to develop and test the vaccine. The FDA declines comment.
STREET THEATER. Facing such bureaucratic snarls and public indifference, some Philadelphians have taken their struggle to the street. The city's chapter of activist group ACT UP has been pressing RPR hard to release the Salk vaccine from inventory. Fearing the street theater that ACT UP specializes in, the company shut down 31/2 hours early, when activists showed up for a demonstration one day last August. In the end, the 25 ACT UP members faced off peaceably against helmeted and rubber-gloved police. Lately, ACT UP members have been quietly meeting with RPR executives, including new President Michel de Rosen. He insists that he wants to be able to provide the vaccine as soon as possible.
Other Philadelphians take other tacks. Szumski, for instance, is looking into legal action to win release of the Salk vaccine, which he credits with keeping full-blown AIDS at bay for him until last May. But despite his low-key style, opponents would be wrong to underestimate Szumski as a fighter. "I believe I'm going to beat this thing," he says. "I believe my mind is stronger than my body." Ultimately, of course, that conviction proves untrue for everyone--but for AIDS sufferers in Philly, such faith may be the most puissant drug they have right now.