Pubdate: Sun, 9 Dec 2007
Source: Buffalo News (NY)
Copyright: 2007 The Buffalo News
Author: Andrew Z. Galarneau, Staff Reporter
Bookmark: (Needle Exchange)

Focus: A Quiet Epidemic


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 

"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.' "
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