Focus: A Quiet Epidemic

HIV TODAY: A LIFE SENTENCE

Much Has Changed in 10 Years Since Nushawn Williams Case Caused a Panic

A decade ago, Chautauqua County health authorities made history by
making public the name of a living carrier of HIV -- turning Nushawn
Williams, a 20- year-old drug dealer, into a poster boy for the AIDS epidemic.

Williams became a symbol for a disease spread by a million bad
choices, reckless sex and careless drug use. Part of his infamy was
based on unproven accusations that are dubious in retrospect: that he
was a deliberate infector, a twisted Johnny Appleseed of AIDS.

The truth was bad enough: Thirteen of his sex partners -- girls and
young women -- were infected with HIV, the virus that causes AIDS.
Seven were infected after Williams was told he carried the virus.

Since 1997, much has changed. Discrimination against a person with
HIV is illegal. New drugs can slow the virus to a crawl. It has
become more common for an infected person to live with -- rather than
die from -- HIV.

Once it sank in that the virus was no longer a death sentence, some
of the public hysteria surrounding it began to fade. But while AIDS
has largely slipped from the headlines during the decade since
Nushawn Williams was identified, the epidemic still rages.

More than 1.1 million Americans -- a number that reaches new heights
each year -- are infected with the virus, whose variants continue to
challenge doctors. The epidemic has mutated, too, in ways that make
Williams -- still in prison on statutory rape and drug charges -- a
fitting symbol of the disease, now more than ever.

African-American men and women now bear a hugely disproportionate
share of the epidemic. In the latest data, 52 percent of people in
Western New York newly discovered with HIV were black; black people
constitute about 12 percent of the population.

The epidemic isn't just a gay disease, either. More than 30 percent
of the newly diagnosed traced their infection to straight sex or drug
use, with another 20 percent uncertain or unwilling to say. "It's an
epidemic of the young, in many ways," said Ron Silverio, president of
Buffalo's nonprofit AIDS Community Services. "But one of the
fastestgrowing groups we're serving is people over 50. They've lived
with it, or they've got a new infection -- their partners are dead,
they haven't been paying attention to the media, and they have no
idea they're swimming in a pool that could be infected."

An Illness in Hiding

It's hard for anyone to describe precisely what's happening with the
epidemic today because HIV has a time-delay fuse. An infected person
might not notice a health problem for 10 years, said Silverio, and
not realize he or she should be tested.

Among his agency's programs is a needle exchange, in which about
4,500 people who are injecting illegal drugs regularly exchange used
needles for new. What the agency would like is for each client to
also have an HIV test, even the 10- minute version now available at
their offices.

"It's a quick transaction, but they don't want to be seen," said
Silverio. "So a very small number of these 4,500 folks have been
tested. Are 10 percent positive? Are 40 percent? There's no way of knowing."

Treatment for HIV is expensive. Anti-HIV drugs cost an average of
$2,100 a month, largely paid by government programs like Medicaid.
County health officials said that in 2006, there were 1,218 people in
Erie County whose HIV treatment was Medicaid-funded.

When left untreated until it is full-blown AIDS, care costs an
average of $4,700 per month, according to a 2006 study.

Compared with those costs, public education and testing campaigns are cheap.

Federal spending on the epidemic, including research, treatment and
public education, has tripled since 1997. In 2006, $21.6 billion was budgeted.

"Right now, a big piece of the epidemic is getting as many people
tested as possible," Silverio said, "so that you can help them
protect other people."

Denying and Denial

The reason Nushawn Williams was tested, in August 1996, was because
the Chautauqua County public health system worked.

A woman who had tested positive for a sexually transmitted disease,
asked to identify her partners, had named Williams. A county public
health worker tracked Williams down at his Jamestown apartment.

Williams described the experience in an autobiographical manuscript
given to Thomas Shevory, an Ithaca College professor and author of
"Notorious H.I.V.," a book about the Williams case.

"I didn't feel like I had HIV," Williams wrote. "I felt good. So I
went back to selling crack and making money and meeting different ladies."

The health worker did persuade him to get tested, though. On Sept. 6,
1996, while in the county jail, Williams was told of the results,
according to Dr. Robert Berke, the county health commissioner. Berke
swore in an affidavit that during the conversation, Williams told the
health care worker he was going to have sex with as many women as he wanted.

Shevory said when he interviewed him in prison, Williams denied being
informed of his condition.

"There's no written record of him getting the news," or the
counseling that is supposed to be mandatory when people are told they
have HIV, Shevory noted.

Williams did later plead guilty to reckless endangerment, agreeing he
had been told, and told a psychiatrist the same thing, Shevory wrote
in "Notorious H.I.V."

Denial is a common reaction to HIV news, especially in a person as
outwardly healthy as Williams, Shevory said. Still, "I don't think
there's any evidence he deliberately tried to infect people," he said.

Williams, who is now 31 and has changed his name to Shyteek Johnson,
declined requests for an interview for this story.

The Scare Fades

The lurid accusations became national news 10 years ago, with
Williams portrayed as a deadly predator who might be responsible for
scores of infections. In Jamestown, during the months following the
announcement, about 1,400 people, mostly high school students and
young adults, stood in line to be tested for HIV.

With HIV infection still considered a death sentence by many in 1997,
commentators raced to top each other in calling for punishment. Life
in prison, said then-Gov. George Pataki. No -- the death penalty,
Montel Williams suggested on his television show.

Of the 1,400 tested in Jamestown, one infected person was found. The
health scare died down.

As far as health officials know, none of the 13 women infected by
Williams saw her health deteriorate into AIDS, and none has died.
Modern anti-HIV drugs can keep the virus from becoming AIDS in most
people and prevent HIVpositive women from passing it on during pregnancy.

That doesn't make living with the virus easy. People who don't take
their pills get sicker, and it makes it more likely that children
born to infected woman will carry the virus, too.

One of Williams' victims let her pills lapse and is now watching her
8-year-old child grow up with the infection, said Dr. Neal
Rzepkowski, a Jamestown HIV specialist who treats them and who
himself has been HIV positive for 22 years.

"The kid's doing fine," said Rzepkowski. "Mommy and the kid take
their medicine together -- she gives the meds to her kid, and that
helps her remember her own meds, too."

Williams married a woman in prison in 2002, and his wife was arrested
in 2003 trying to smuggle him marijuana. Williams himself appears
fit, Shevory wrote after a 2004 visit.

40,000 Cases Each Year

An estimated 2,500 people in Western New York are living with HIV,
with 138 new HIV and AIDS cases reported in 2004, the most recent
annual data available. That year, 45 people in Western New York died from AIDS.

Statistics from 2004 also say 13,063 people in the United States died
that year from AIDS. It didn't make the top 15 causes of death:
Murder was No. 15, claiming 17,357 lives. Diabetes was No. 7, killing 73,138.

The continuing tragedy of HIV-AIDS is, of course, that it is entirely
preventable. Each infection is preceded by the failure of public
education, and private choices about sex and drugs. Yet despite the
wellknown ways HIV is transmitted, newly diagnosed infections in the
United States remain steady at about 40,000 annually.

"HIV remains a significant threat to the health and well-being of
America," said Jennifer Ruth, spokeswoman for the Centers for Disease
Control and Prevention National Center for HIV/AIDS. Of the estimated
1 million Americans carrying the virus, about one in four don't know
it, Ruth said.

"Most Americans with HIV are diagnosed late in their infections --
within a year of developing full-blown AIDS," she said. "Testing is
really the key."

An Unintended Benefit

Williams actually made the process of finding infected people a
little easier in New York State.

After his case hit the papers, the State Legislature passed a bill
that added HIV to the diseases requiring an attempt at partner
notification. That is, when someone tests positive now, the doctor
asks them for names of sexual partners who should be notified.

Those names go to the local county health department to try to locate
the people and persuade them to get tested.

In 2004, there were 4,559 people reported newly diagnosed with HIV in
New York State. When asked, the patients gave officials the names of
2,510 people they had had sex with, according to the state Health Department.

Of those names, Health Department notifiers were able to reach
two-thirds, about 1,650.

The law had long required an attempt at partner notification about
other sexually transmitted diseases, such as syphilis. That was why
the Chautauqua County Health Department was looking for Nushawn
Williams in the first place.

It was also fateful that the county had so few HIV cases, all coming
to the desk of a single official, who could recognize a common
denominator. "He went to a place small enough to identify him," said
Assemblywoman Nettie Mayersohn, DFlushing, a chief sponsor of the
bill. "If he hadn't moved from Brooklyn, there would have been no end
to the infections he could have caused."

The next improvement in HIV testing should be eliminating the current
requirement for separate paperwork and counseling for the test, Mayersohn said.

"Patients should be able to get an HIV test as part of their standard
testing, with all the others," she said. "Making it a special case
means that some patients, and some doctors, will decide they don't
have the time."

The High Price of Care

Despite all the advances in understanding and treating the epidemic,
its size and cost are expected to continue growing.

New anti-HIV pharmaceuticals are being approved, but each year the
doctors' arsenal loses its effectiveness on some HIV patients, and
they slip into AIDS. Also, more people in emergency rooms for
pneumonia and other serious conditions are finding they have AIDS,
never having been tested for HIV.

The number of AIDS cases reported annually is climbing slightly, with
42,514 reported in 2004, according to an analysis by the Kaiser
Family Foundation.

For years, the message about AIDS was that gay guys get it, then it
was drug users, said Rosetta Menifee, an Erie County Health
Department AIDS educator. The problem was, that left a lot of people
wrongly thinking they weren't at risk, said Menifee, who has lived
with HIV for 25 years.

To prevent HIV, you have to talk about sex and disease honestly, Menifee said.

"When you interact with another human being, you're going to spread
germs," she said. "If I put a tissue over my nose, you expect that of
me, but if I put on a condom, then it's, 'I don't think you're a
person I should have sex with' or, 'You're questioning me.' "

Research shows that HIV spreads especially well if its host already
has a sexually transmitted disease. But telling someone you're
intimate with hasn't gotten easier in the years since Nushawn
Williams failed so famously.

"If you look at the stats, we haven't declined the numbers," said
Menifee. "We haven't changed behaviors. We've gotten more
medications, so we can live longer, but we haven't changed the behaviors."

Even a veteran sex educator like Menifee, used to revealing sexual
details in front of crowds, can have problems.

Menifee gave a daughter up for adoption when she was young and got
back in touch with her a few years ago. Menifee couldn't tell her she
was HIV-positive, though she dropped some hints. A bottle of HIV
medication sat on a counter during a visit.

Some time later, the young woman told Menifee she knew Menifee was
HIV-positive.

"She said, 'I saw that medication you were on, and I Googled it and
found out it's a treatment for people who have cancer and AIDS,' "
Menifee recounted. "She said: 'I figured if you had cancer, you would
have told me.' "