10,000 cases, and AIDS endures; As the epidemic reaches a milestone, awareness and indifference grow

By Pamela Ferdinand, Contributing Reporter

The death certificate for a man in his late 30s puzzled Boston funeral director Kenneth F. Bennett when he saw it 13 years ago. It read, "acquired immune deficiency syndrome," and a mystified Bennett remembers calling a state health official to ask precisely what that meant.

"He indicated that this was the beginning of a very serious epidemic," Bennett recalled.

That case, in 1982, was one of the state's first reported AIDS-related deaths. Today, Bennett handles three such deaths a week at his Kenmore Square funeral home.

Last month, the state passed a grim milestone when the 10,000th person in Massachusetts was diagnosed with AIDS, of whom some 6,000 have died. Another 30,000 have tested positive for the human immunodeficiency virus (HIV) that causes the disease.

Now the leading cause of death for those aged 25-44 in the United States, the face of AIDS has changed dramatically in Massachusetts and the nation. Women account for 50 percent of new infections. The percentage of cases among heterosexuals increased from 9.2 percent in 1993 to 10.3 percent in 1994. The as-yet uncurable disease has produced a social culture bound by fear, loss and love. It has led to medical breakthroughs, anti-discrimination laws, improved sex education and expanded social services.

Nearly 2,000 people living with AIDS or HIV celebrate Thanksgiving together each year in Hynes Auditorium. Hundreds pray in an annual healing service every winter at the Cathedral of the Holy Cross in the South End.

Awareness has grown, with admissions by celebrities like Greg Louganis and Magic Johnson. But so has indifference. Kids can recite virus facts and bodily fluids - but don't change their sexual behavior. Discrimination persists, and some fear compassion will dwindle in a climate of funding cuts.

Larry Kessler, executive director of the AIDS Action Committee, said of the state's 10,000th diagnosis of AIDS: "It's a good reminder that while you weren't paying attention, something has been happening, and 10,000 is no small potatoes. They are your neighbors, your co-workers and your friends. And now they have AIDS."

Robert Allen, 36, of Methuen, had three sexual partners in his lifetime. He was diagnosed with HIV in 1985.

A slender man with blue eyes, reddish-blond cropped hair and a moustache, Allen thought he was going to die several years ago. So he spent his savings on gifts for nieces and nephews and trips to Puerto Rico and Mexico.

Now he is a longtime survivor, living in a public housing development filled with elderly residents because his savings were depleted. His mother hasn't spoken to him since he went public with his homosexuality by making an AIDS quilt panel in memory of his partner of seven years, Steven, who died in 1991 and whose photo remains on the side of his refrigerator.

Allen has had meningitis and suffers badly from neuropathy, which makes his muscles ache, and occasional night sweats, which drench his sheets. But he still volunteers for an AIDS agency three times a week and takes a daily handful of pills.

"I take really good care of myself, plenty of sleep, make sure I eat right and make sure people don't stress me out," says Allen. "I stopped going to funerals unless it's a really close friend. I just can't do any more funerals."

In 1983, people diagnosed with HIV typically lived six months. Now they live an average of 30 months from diagnosis, doctors say.

Improved doses and combinations of drugs such as AZT and 3TC help, and antibiotics prevent related infections, including pneumocystis, which causes severe pneumonia. Researchers are also testing new drugs and investigating gene therapy, and they recently reported the first case of an infant infected at birth who fended off the virus by his first birthday.

An informal poll by the Harvard AIDS Institute last year showed 50 leading AIDS scientists and policy makers believe that AIDS will eventually be effectively treated and cured. Many are also calling for efforts to develop international vaccines and surveillance of lethal, foreign HIV strains. At a conference Wednesday, institute chairman Max Essex called for national screening to see if yet more infectious HIV subtypes are moving into the United States.

Generally, someone infected with the HIV virus in the last two years with a white blood cell count above 200, who eats properly and exercises, stands a decent chance of maintaining a good quality of life, said Jerome Groopman, a New England Deaconess Hospital hematologist and Harvard University professor of medicine.

"The disease is not cured, but I think we are on the right road," Groopman said. "There's much better understanding and empathy on the part of the academic community and more trust on the part of the HIV-infected community, so that has removed a lot of the conflict that led to people rejecting mainstream treatment."

In Massachusetts, dozens of clinics and social service agencies have sprung up since AIDS first appeared in the early 1980s. In Cambridge, for instance, with the highest number of AIDS cases in Middlesex County, the Zinberg Clinic saw 50 people in 1990. It now treats 400 people with HIV annually, a quarter of whom have AIDS.

The state budget for AIDS-related services, slated to remain level next year, increased to $ 37.5 million in 1995 from $ 18.2 million in 1992, Department of Public Health figures show.

About 1,300 injection drug users participate in pilot needle exchange programs in Cambridge and Boston. New residences for people with HIV and AIDS are planned for the Fenway and Beacon Hill. Religious groups opposed to homosexuality and contraception run support groups, meals, hospices and special functions for those with AIDS, including the annual Catholic Church healing service at the Cathedral of the Holy Cross.

"Last year, the cardinal went to one young man holding a 2-year-old," said Sister Zita Fleming, director of the Archdiocese of Boston's Office of Aids Ministry. "I was close enough to say, 'Which one is to be anointed?' and the father said, 'Both.' You just weep."

Increasingly, the courts will have to determine the rights of HIV-infected people, from issues of confidentiality and mandatory testing to definitions of "reasonable accommodation" when employees with HIV or AIDS miss work, said Janice H. Platner, executive director of Gay and Lesbian Advocates and Defenders.

"We've had discrimination cases in emergency rooms and all sorts of places that should know better," Platner said. "People are discriminating and not apologizing for it."

Catherine Gaudette, 25, of Milford, says she suffered for months with chronic pain because doctors accustomed to treating men failed to detect her gynecological infections. She contracted HIV after her college freshman year through unprotected sex with her fiance. She tested positive in 1990 and was diagnosed with AIDS in August 1992.

By then, she had discovered that the former fiance, who told her he had cancer, had been keeping two secrets: He was a heroin addict and he had a gay lover.

Gaudette says she transferred to four colleges to complete a psychology degree, twice because of discrimination. One professor told AIDS jokes in class. Two roommates broke into her locked file cabinets, discovered HIV pamphlets and tried to get her thrown out of school.

"Being a straight woman with this disease has been very lonely because people automatically assume that I'm a drug user," said Gaudette, who speaks to children about AIDS and appears healthy at 5-feet-7 and 165 pounds. "I'm not sick looking. It scares the crap out of them, actually, because they're just like, 'I thought you could tell by looking.' "

AIDS has become an illness transmitted without regard for sexual identity, gender or race. Half of the state's residents with AIDS now live outside Greater Boston, up from 33 percent in 1986. But many suburban professionals are reluctant to come forward, said Madelaine St. Amand, executive director of Strongest Link.

While state officials say the disease has shifted to new populations, others say recent statistics reflect greater attention to minority communities still in need of housing, culturally sensitive education and medical treatment.

In one case, HIV-related lesions on a Latino man's skin were not recognized because they were brown, not purple, said Nicolas P. Carballeira, director of the Latino Health Institute. That has changed to the extent that "a thin Latino coughing very often is misdiagnosed with HIV or AIDS because people now expect minority communities to be infected," he said.

"AIDS is directly killing the minority community," said Jeffrey Beard, executive director of the Cambridge Men of Color Task Force, who lost his brother to AIDS. "The challenge is outreach, to get to where people are."

Injection drug users, many of whom are female and minority, represent a growing segment of the AIDS population as the purity of heroin increases and its price falls. Statistics show AIDS transmission through injections statewide have nearly tripled in the past 10 years to 47 percent of all cases diagnosed in 1994.

Crack smoking and oral sex are also "extraordinarily dangerous" because the pipe leaves burns in the mouth, said Mark Kleiman, associate public policy professor at Harvard University's Kennedy School of Government.

He suggested that police crack down on places where people shoot heroin, rather than arrest those who illegally circulate clean needles, to prevent sharing. Massachusetts requires prescriptions for needles and syringes, and police respond they are merely enforcing the law.

Said Kleiman, "The law enforcement community has not been interested in AIDS control, and the AIDS community has not been interested in law enforcement."

Rafael Fainz, 21, a gay Latino man from Haverhill with jet black hair and brown eyes, estimates that he had sex with 200 partners, including many strangers at highway rest stops, but had unprotected sex with only two or three of them.

"That's the important thing. It's not the quantity, it's the quality of sex that you have with each one," says Fainz, who was diagnosed with HIV at age 18. "When you're out in the woods and stuff, you really don't have the availability of condoms."

In his Catholic home and parochial school, Fainz says no one ever spoke to him about sex and told him AIDS was a "gay thing." What little he learned he learned through the Boston Alliance for Gay and Lesbian Youth.

The youngsters Fainz speaks to as a health educator at the Latino Health Institute either believe AIDS can't happen to them or are absolutely convinced it will, he says: "They think, 'It's hopeless, so why not just do it and have fun and go out with a smile?' "

A new generation is at risk, and some suggest AIDS activism has been misguided, treating the symptom and not the disease.

"Don't have sex outside of marriage, and don't do drugs," said Nancy Sutton, executive director of Family First in Needham. "The conventional wisdom is that if you use condoms and sterilized needles, you won't have any problems. But that's ridiculous. Eventually condoms break and needles get dirty." While AIDS activists push for condom use and safe-sex education, others, like Sutton, say abstinence is the only answer.

Felicia Swan, 17, says she knows not to have sex without a condom. But the Boston teen-ager adds, "Guys know about AIDS, but they think they're too good to catch it."