Pubdate: Mon, 05 Jun 2006
Source: New York Times (NY)
Copyright: 2006 The New York Times Company
Contact:  http://www.nytimes.com/
Details: http://www.mapinc.org/media/298

THE STATE OF AIDS, 25 YEARS AFTER THE FIRST, QUIET MENTIONS

On June 5, 1981, in the Morbidity and Mortality Weekly Report from 
the federal Centers for Disease Control and Prevention, brief note 
was taken of a peculiar cluster of pneumonia cases in five otherwise 
healthy gay men.

The item was the first official mention of a scourge that had no 
name, no known means of transmission, no treatment and no cure.

AIDS, as it would eventually be called, was already spreading fear in 
America's gay enclaves, where before long half the young men who came 
of age at the dawn of the gay liberation movement would be infected, 
stigmatized, ravaged by rare infections and cancers, and die. It soon 
reached into neighborhoods already burdened by poverty and drug abuse.

For years after that federal report, one of the few certainties was 
that this disease, to quote other reports, was "invariably fatal." 
The United Nations estimates that today, H.I.V., the virus that 
causes AIDS, has infected more than 65 million people, 25 million of 
whom have died.

Eventually, scientists discovered the virus that caused AIDS and a 
test to screen for it. They learned the primary routes of 
transmission -- unprotected sexual intercourse, intravenous drug use 
and prenatal infection. They found a cocktail of medications that 
slowed the disease's progression, at least in America. In Africa and 
Asia, AIDS continues to cut a deadly swath.

THE NURSE by Jane Gross

The difference between then and now is stark for Joan Vileno, a nurse 
at Montefiore Medical Center in New York. "In those days," she said, 
"all of our patients died."

Ms. Vileno, 57, said she chose to start her career at an urban 
academic medical center for the "unique experiences" that setting 
would provide. But she had no idea how unique those experiences would 
be. "No textbook could prepare us for what we were about to see," she said.

In the early 1980's, Ms. Vileno held the hands of angry, terrified 
and scorned patients, mostly intravenous drug users. They were 
admitted with lethal infections, rarely seen today, that left them 
gasping for breath, covered with cancerous lesions, blind, demented 
and wasted to skin and bones.

There were no medications to cure them of a disease then called Gay 
Related Immune Deficiency, or GRID, although at Montefiore, in the 
Bronx, the patients were rarely gay. In a study of a drug that proved 
ineffective, the average survival time of 300 Montefiore participants 
was eight months.

Today, Ms. Vileno runs a program for AIDS patients 50 and over who 
have lived long enough to also have the medical problems that come 
with middle age.

But a quarter-century ago, absent any effective treatment, the staff 
improvised. "The things we were able to do had nothing to do with our 
job descriptions," she said.

Many patients were unwilling to come to the AIDS clinic lest they be 
seen by someone they knew. So Ms. Vileno made house calls. Other 
patients, shunned by family and friends, all but moved in to the ad 
hoc clinic -- then a bit of borrowed office space with a tiny staff; 
now a vast and humming operation.

Ms. Vileno once took a toddler home for the weekend so a husband 
could stay in the hospital with his dying wife. She organized a 
wedding in the clinic, officiated by a minister married to a staff member.

When funeral parlors refused to handle bodies, for fear of contagion, 
Ms. Vileno found a willing undertaker and invited him to staff 
meetings so he would feel like part of the team.

And returning from an AIDS conference in Paris, she went directly to 
the hospital. Four patients had died that week, one of them estranged 
from his family. He had designated Ms. Vileno his representative, so 
the morgue could not release the body for burial without her signature.

"Everything we did was out of the box," she said. "People today 
think, 'What are you talking about?' But it was a unique point in 
time, hopefully never to be repeated."

THE MOTHER by Brenda Goodman

ATLANTA -- Lisa Mysnyk describes the man who gave her H.I.V. as "one 
of those African-American men who can't seem to stay out of jail." 
Still, she stayed with him for three years. Sometimes they used 
condoms. Sometimes they did not.

Ms. Mysnyk, who is also black, now knows that "sometimes" can be a 
very dangerous word.

"I got caught up in the idea that he wouldn't cheat on me," she said.

Just over half of new H.I.V. infections in the United States are in 
blacks, according to the federal Centers for Disease Control and 
Prevention in Atlanta.

Three years ago, her boyfriend tested positive for the virus while in 
prison. The staff made him call all his sexual partners to warn them 
about their own risk. When he phoned Ms. Mysnyk, he said he had 
something to tell her, but he could not seem to get it out. She 
finally heard the news from a prison nurse.

Her boyfriend called two other women that day, both of them younger 
than Ms. Mysnyk, who was 34.

While she waited for her test results, Ms. Mysnyk, a single mother of 
two young sons, told the doctor, "If I didn't have the Lord by my 
side, I'd be a nervous wreck right now."

When the doctor told her she had H.I.V., Ms. Mysnyk started to cry. 
Her doctor cried with her.

A few days later, she taught her younger son, who was 7 at the time, 
how to use a condom. She had a no-nonsense conversation with her 
14-year-old about sexually transmitted diseases. "I didn't want him 
to ever have to be afraid," she said.

In the beginning, her own fear centered on how long she would live 
and what she could do to keep herself alive. "I started taking all 
these medications," she said, "and I never liked taking pills."

Ms. Mysnyk takes six pills a day, her virus level is undetectable and 
her immune system continues to be strong. She thinks she could live 
30 or 40 more years as long as the drugs keep working.

She imagines that having the virus is a lot like having any other 
chronic disease. But unlike most other diseases, she knows, H.I.V. 
can almost always be avoided.

That is why, when she learned that a young woman who lives in her 
building was coping with a second unplanned pregnancy, Ms. Mysnyk, 
rather than offering words of sympathy, asked her a blunt personal 
question: "Do you and your boyfriend use condoms?"

Her neighbor admitted that sometimes they did and sometimes they did 
not. "Sometimes," Ms. Mysnyk told her, "isn't good enough."

THE PROSTITUTE by Anand Giridharadas

MUMBAI, India -- With the strut of a baby-kissing politician, Mrs. 
Shah strolled down the byways of the red-light district the other 
day, pausing every few steps to offer a hug and a stern lecture to 
the prostitutes.

Mrs. Shah -- tall and serene at 35, wearing a turquoise sari -- began 
each conversation gently, with a joke or a compliment. A woman's 
makeup, she might say, was looking nice. Then she would lean in 
closer, glance around for onlookers, and pull out a pamphlet from the 
AIDS organization for which she works part time. Pointing at explicit 
photographs, she fired out her lessons: This is how to wear a condom; 
this is what an infection looks like.

When her shift ends, Mrs. Shah, who is being identified only by her 
common last name to help protect her identify, resumes her night job. 
By midnight, if luck is kind, she will be in a cheap hotel, earning a 
few dollars from a strange man for what she calls the only work she 
knows. And because she must survive, Mrs. Shah will fail to tell him 
- -- even as she insists on a condom -- that she is a prostitute with H.I.V.

The United Nations reported recently that India had become the 
H.I.V./AIDS capital of the world, its 5.7 million infections 
surpassing South Africa's 5.5 million. Some Indian officials have 
disputed that number, but the government has acknowledged that the 
spread of the virus shows no signs of easing.

AIDS is often cast as an epidemic of bad choices. But it is also, in 
the life of Mrs. Shah, an epidemic of the choiceless.

Since childhood, she has walked on a path leading, with ever greater 
inevitably, to AIDS. At 13, she was forcibly married to a 35-year-old 
who kicked her out when she complained of his infidelities. Days 
later, a woman found her on the platform of a Bombay train station 
and offered to find her a job as a maid. By evening, she had been 
sold to a brothel for 10,000 rupees, $220 today.

Once, she said, a customer became a lover, married her and took her 
away. When he needed money, though, she was back on the street. She 
protested, and he stabbed her in the cheek and back, burned her with 
kerosene on the belly and legs and shaved her hip-length black hair 
down to the scalp.

Two years ago, a test found her H.I.V. positive. "I went crazy," she 
said. She drank and took pills, trying to kill herself. Then social 
workers approached her, looking for prostitutes to educate about AIDS.

"I had an idea," she said over a cup of tea, "that what happened to 
me, I would not let happen to other girls."

THE RESEARCHER by Carol Pogash

SAN FRANCISCO -- Work on AIDS remains his calling, but the grand 
emotions of the early years have subsided. Today, both the disease 
and Dr. Paul A. Volberding, a physician and researcher who is graying 
and has an arthritic curl to his fingers, have settled in.

Strangers on airplanes no longer accost him with questions about 
quick cures, and young men no longer die in his arms. Now if a 
patient dies, he said, "We think we've done something wrong."

Dr. Volberding, 56, who for many years ran the AIDS program at San 
Francisco General Hospital, now heads medical services at the San 
Francisco Veterans Affairs Medical Center. These days his AIDS 
research, like much of the pandemic, is focused on Africa.

"It feels good to do something so clearly needed that improves health 
so dramatically," he said of his work in Uganda.

Dr. Volberding has been touched by AIDS since July 1, 1981, his first 
day at San Francisco General, when he treated a 22-year-old gay man 
with Kaposi's sarcoma, a disease that until then was seen mostly in 
the elderly. After he came across other cases, Dr. Volberding did 
what academics often do: He studied them.

Because established physicians lacked the time and often the 
inclination to take on what was known as the gay disease, the field 
was wide open. At 31 and with a staff of one (himself), Dr. 
Volberding opened one of the first clinics anywhere for people with 
the disease. A year later, with assistance, he began conducting small 
clinical trials.

"The patients were so much like us," Dr. Volberding said. "We were 
all young." Many of them, he recalled, listened to the same music. He 
still keeps an old Grateful Dead poster on his office wall.

In those early years, Dr. Volberding and his colleague, Dr. Marcus 
Conant, both professors at the University of California at San 
Francisco School of Medicine, listed every patient in the city on a 
blackboard. They knew each by name.

Financing was scarce. Dr. Volberding remembered Dr. Conant suggesting 
that they wait until there were 1,000 cases, and then the government 
would take notice.

Many researchers thought they, too, were at risk. Both Dr. Volberding 
and his wife, Dr. Molly Cooke, also a physician, experienced such 
fears. Once when Dr. Volberding found a blotch on his skin, 
colleagues had to reassure him it was not Kaposi's sarcoma. All that 
has changed, too. Today, Dr. Volberding said, he and his patients 
commiserate mostly about arthritis and aging.

THE ARTIST by Campbell Robertson

Art is forced by crisis to become political, and so it has been with 
AIDS, says the playwright Tony Kushner. The early works came in 
partly as a response to a society that was slow, even resistant, to 
accept the reality of a new pandemic.

"It was so clearly the dominant culture's mandate that AIDS death and 
AIDS suffering should be silenced," Mr. Kushner said. "The obvious 
thing to fight it would be to speak of it and articulate it."

What followed were works like Larry Kramer's 1985 play, "The Normal 
Heart," and Mr. Kushner's own Pulitzer Prize-winning 1993 drama, 
"Angels in America."

Only recently, he said, did he begin to reflect on the impact that 
the early years of AIDS had on the creative culture, especially on 
writers and artists.

"We were a community that was in a certain sense ideal in terms of 
responding in an organized fashion," Mr. Kushner said. "As soon as it 
became an issue of poverty, it lost a degree of organizational 
support, as soon as it became more or less brought under control in 
certain ways in the U.S.," he said. "You can't sustain rage for decades."

The great hole in the landscape is hard to comprehend even now, years 
past the time when AIDS was ravaging the American art world unchecked.

"There's a group of gay men about five years older than me who no 
longer exist, who would still be alive and producing work, who are 
gone," said Mr. Kushner, 49. "And there are a number of people I know 
who survived the epidemic but who in a certain sense didn't survive, 
who entered a permanent state of mourning."

THE PIONEER by Richard Perez-Pena

Twenty-five years ago, Lawrence D. Mass was running an addiction 
treatment program in Manhattan for Greenwich House, a social services 
group whose clients included drug abusers and gay men.

Fertile ground, it turned out, for first documenting the disease that 
would become known as AIDS.

A little-known physician, Dr. Mass wrote what AIDS chroniclers regard 
as the first article on the emergence of -- well, of something 
unusual and terrible, but exactly what was not clear at the time. The 
article appeared in The New York Native, a small weekly written for a 
gay audience, on May 18, 1981, several weeks before the first 
scholarly journal weighed in.

Dr. Mass, who is gay, went on to become a founder of Gay Men's Health 
Crisis and to devote much of his life to fighting the disease he had 
stumbled onto.

In early 1981, Dr. Mass, then 34, had heard fragments of rumors about 
strange health problems cropping up in Lower Manhattan, especially 
among gay men. He found Dr. Steve Phillips, an epidemiologist with 
the Centers for Disease Control and Prevention, who was following the 
new mystery. Based on his conversation with Dr. Phillips, Dr. Mass 
wrote a short article about "rumors that an exotic new disease had 
hit the gay community."

There was so little anyone knew at first, and so much that people got 
wrong. But looking back, said Dr. Mass, who still practices medicine 
in Manhattan, there is one essential truth he believes he had right all along.

"From the start, I said you need to acknowledge our civil rights, you 
need to recognize our relationships, to have any chance of containing 
and preventing AIDS," he said. "Shame and fear make it worse."

THE FRIENDS by Katie Zezima

PROVINCETOWN, Mass. -- Jay Critchley's recollection of what happened 
when AIDS first hit this gay-friendly town on the tip of Cape Cod is 
clear and stark.

"People just disappeared and died," he said. "It was that dramatic, 
and it was frightening."

It was common to see men with lesions walking in and out of the 
shops, bookstores and restaurants that line the town's main street, 
struggling to breathe the salt air, said Mr. Critchley, an artist and 
massage therapist. Asking someone if he had lost weight was taboo; it 
meant asking if he was sick. Friends made sure to stay in close 
contact, because those who fell out of touch were usually dying.

The town's gay residents drew together and cared for the sick. Many 
went house to house, making sure they were comfortable, safe, well 
fed. Still, no one understood the provenance of the suffering, and 
when investigators from the federal Centers for Disease Control and 
Prevention came to town on a fact-finding mission, many gay men 
simply assumed that they, too, would get sick and die quickly.

"There was a time when I just waited for it to happen to me," said 
Tom Sterns, an antique shop owner and 30-year resident. "There wasn't 
any point in getting tested because they couldn't do anything for 
you, and I didn't want to face having it."

In the mid-1980's, he finally got tested. The results were negative.

AIDS changed Provincetown itself, for good and bad. In the summer of 
1983, many tourists stayed away, fearful of contracting the disease. 
But gay men in the once carefree community grew cautious about unsafe 
sex, Mr. Critchley said.

As advances in drug treatment have allowed infected men to lead 
longer, productive lives, the disease is no longer visible, Mr. 
Sterns said, and is not in the forefront of every gay man's mind.

But that is leading to more problems, said Mr. Critchley, who sees 
more men slipping back into careless sexual practices.

With the reduction in fear, the town too has changed. Rising real 
estate prices and an influx of tourists have chipped away its 
neighborliness and bohemian flair.

"The town is so dramatically different now than it was 10 years ago," 
Mr. Critchley said.
- ---
MAP posted-by: Richard Lake