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Activist sticks to cause, despite a losing fight with AIDS


AIDS activist John Stuban's grating, gravelly voice disrupts meetings, dominates public demonstrations and spears City Council members, political appointees, doctors and friends alike with the precision and sometimes the pain of a dart hitting its target.

Since 1987, when Mr. Stuban whirled into town from New York, a cyclone of anger and outrage at what he decried as discrimination against people infected with HIV, those involved locally in AIDS programs have, like it or not, listened.

As founder of ACT UP Baltimore, a member of the Greater Baltimore HIV Planning Council and chairman of the city's People With AIDS Coalition, the 37-year-old's jeans-clad figure sometimes seems to be everywhere at once.

In recent months, however, the virus Mr. Stuban has taken on as a political cause has exacted a heavy personal toll. Since June, he has been diagnosed with three opportunistic infections, all of which prey on immune systems weakened by the human immunodeficiency virus and any one of which is an ominous sign of acquired immune deficiency syndrome.

With characteristic directness, Mr. Stuban says: "We're not talking about warding off the onset of AIDS here anymore. We're talking about warding off death."

His failing health has caused a ripple of worry among some members of the AIDS community. "The great fear now is he is having trouble, and how long can he do this? There is no heir apparent," says Garey Lambert of AIDS Action Baltimore.

"It's been real tough watching John get sick. I think he was seen as somewhat invincible," says his longtime companion, Merle McCann, president of the board of directors at Chase Brexton, an AIDS clinic, and a psychiatrist in private practice.

"People thought as long as John was active and healthy and yelling at people, it would be OK. But John is dying."

A political upbringing

Born in Berwick, Pa., in 1956, Mr. Stuban grew up steeped in politics. His father, Ted, who retired two years ago, was a mayor, a city council member and a state legislator. As children, John and his older sister, Kathy, pitched in during their father's campaigns.

"We grew up very close. Our family was always involved and always worked together," says Kathy Duda, Mr. Stuban's sister, who drives to Baltimore from Springfield, Va., three or four times weekly to visit.

Even as a youth, says Mr. Stuban's mother, Vee, her son was disconcertingly direct. "He's honest with you whether it hurts or not -- even with us," she says. "But he is as strong in his love as he is in his words or actions."

Mr. Stuban first attended Lycoming College in Williamsport, Pa., and ultimately received a political science degree from Hunter College in New York City.

In the years after graduating, Mr. Stuban lived a fast life. Days were filled with graduate-level political science classes at New York's City College, political voluntarism, gay activism and work as a partner in a small catering company.

Nights, though, were filled with drugs, "acid" and wild dancing that sometimes went on for days. It was during this time, while vacationing in Rehoboth, Del., that he met Dr. McCann and began a relationship that would provide direction and purpose, Mr. Stuban says.

But as early as 1981, Mr. Stuban had lost a close friend to the "gay disease" and had come to the realization that he, too, was likely infected with the then-unidentified illness.

Some time in 1985, he tested positive for the human immunodeficiency virus. The moment wasn't memorable because he had become fatalistic. "By then it didn't matter," he says. "I had buried a lot of friends."

Raw from the early ravages of the epidemic in New York's fast-lane gay circles, Mr. Stuban moved to Baltimore to live with Dr. McCann, bringing with him anger and the in-your-face tactics of big-city activism.

"Very early on, I decided it was probably in my best interest to live this illness -- and that meant making my life a part of HIV," says Mr. Stuban. "The cost of not being active is dying. The more I act, the more alive I am."

In his headlong rush into action, Mr. Stuban swept Dr. McCann, who is HIV negative, along with him. Before they met, Dr. McCann says, "I was plugged into my professional life. Getting up and going to work and coming home and going to bed. Especially since I was a psychiatrist, I thought I was helping people all the time. But now I think that's not enough."

Even Stuban/McCann parties are vehicles for the cause. Guests are often asked to make a donation to a specified AIDS program. At the crowded gatherings, drag queens rub elbows with straight doctors who specialize in care of acquired immune deficiency syndrome, and city politicians network with constituents too numerous to ignore. "The most amazing thing about his parties is the people," says Mark Shaw, a spokesman for ACT UP. "You have 19-year-old kids with HIV next to 85-year-old women dressed in Chanel."

In 1989 at a Gay Pride Day gathering, Mr. Stuban presided over the first meeting of ACT UP Baltimore, part of a national network of organizations known for civil disobedience. Since then, local ACT UP events have included picketing the mayor's house, delivering a coffin filled with petitions to City Hall, and staging loud protests anywhere its members felt their cause would be advanced.

"What John did is he empowered us, and that's the greatest gift," says Mr Shaw, who attended the first gathering.

Conscience of council

Three years ago, Mr. Stuban was appointed by Mayor Kurt L. Schmoke to the Greater Baltimore HIV Planning Council, a 30-member committee that decides how Ryan White funding should be spent. The Ryan White act allocates federal funding to state and local AIDS programs.

"He is the conscience of the (Ryan White) council. He probably knows more about AIDS in Baltimore than any other single person. He knows the disease, he knows the players and he knows the funding," says Dr. John Barlett, director of the infectious disease division at the Johns Hopkins Medical Institutions and cochair of the council.

But throughout these years, patterns of substance abuse set by Mr. Stuban in New York were getting out of hand -- as was his rage. "I was unreasonably hurting people, and every morning I'd say, 'I'm not going to drink,' but I would before noon," he says. On Jan. 30, 1990, he joined Alcoholics Anonymous and, he says, still attends AA meetings almost every day.

And since then, acquaintances say that something -- AA, the passage of time or ill health -- has softened Mr. Stuban a little.

"I think he got more broad-minded as time passed. He didn't get less abrasive in general, but instead of just screaming and shouting he began saying, 'All right, let's see how we can do this,'" says Indira Kotval, director of client care at the Health Education Resources Organization (HERO), which has been a target of Mr. Stuban's ire.

Still, some critics say that his blunt style sometimes backfires and offends those who might otherwise be persuaded to help people with AIDS.

"For my purposes, sometimes he crosses the line," says City Councilman Carl Stokes, who co-chairs the Greater Baltimore HIV Planning Council. "I don't disagree with his issues. I think sometimes he pushes it a little too far."

"By now he would have offended just about everyone," says Brenda Pridgen, Baltimore's AIDS coordinator, to whom Mr. Stuban once presented a cofffin in protest of what ACT UP

called the city's unresponsiveness to the epidemic.

"A lot of people think, 'He's loud. He's not logical. I'm going to put him in the loud/obnoxious/dismiss-him category,'" Ms. Pridgen says.

"If you don't know John's soul, you would misinterpret him. But if you know his soul, you know that he truly stands behind what he says and he is oftentimes right."

'They are afraid'

Every day now, Mr. Stuban goes to the Chase Brexton Clinic for health care.

His focus has changed with the demographics of the epidemic, he says. "In the beginning I fought for my friends who were dying and for myself. Now I worry whether all people have the same access to care...

"People say, 'I would like to be like you and stand up for things.' They could do it if they wanted.

"They are afraid. I could be ahead in life if I had played the game. I didn't. But I can sleep at night."

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