AIDS, 20 YEARS LATER NEW THREATS IN THE FIGHT: COMPLACENCY AND DENIAL - The Buffalo News

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AIDS, 20 YEARS LATER
NEW THREATS IN THE FIGHT: COMPLACENCY AND DENIAL

Ebony Alexander and her co-workers fight the battle against AIDS one conversation at a time.

Last week, you might have seen the group making its way along Main Street. They distributed condoms, handed out literature about safe sex, and chatted up passers-by about a disease that has grown into a global epidemic.

"Today's generation is so open about sex, yet so risky about it. You talk to young people, and they think AIDS is something that won't happen to them," said Alexander, an educator with the Erie County Health Department.

Twenty years ago in June, the first diagnosed cases of AIDS appeared in the Buffalo Niagara region. Despite significant advances in treatment and a decrease in deaths, the need for delivering the AIDS-prevention message face to face has not slackened.

Infection with HIV, the virus that causes AIDS, is growing in Buffalo, especially among minorities.

From 2000 to 2001, the most recent period of data available, the number of newly diagnosed AIDS cases jumped in the city from 81 to 136, according to statistics from the federal Centers for Disease Control and Prevention.

While those are small numbers compared to metro areas with the worst AIDS problems, they are higher than comparable communities. Buffalo's AIDS infection rate of 11.7 cases per 100,000 population exceeds what's found in such cities as Pittsburgh and Cleveland.

When AIDS was first identified in the United States in 1981, it was a disease largely associated with gay white men. Today, here and across the country, the epidemic has concentrated in inner-city neighborhoods among the poor and intravenous drug users.

Minorities, especially heterosexual women, appear to be particularly at risk.

African-Americans and Hispanics -- as of December 2002 -- represented 64 percent of the 853 people living with AIDS in Erie County, far in excess of their share of the population, according to data from New York State. Women were 11 percent of AIDS cases in 1990 but 28 percent between 1998 and 2000.

Indications are the problem is getting worse.

"What we are seeing is an epidemic in communities of color," said Judy Deane Barton, HIV/AIDS program specialist for Erie County. "Services for these people in New York State are well-intentioned, but missing the mark."

The epidemic changed in other ways.

Men having sex with men caused 65 percent of the AIDS cases in the region in 1990, but only 27 percent of cases diagnosed between 1998 and 2000.

Similarly, infection from heterosexual sex represented 5 percent ofcases in 1990, but jumped to 17 percent of cases in the more recent period.

Shunning tests, treatment

Barton said it's difficult to prevent HIV infection in an atmosphere heavy with complacency and denial.

She said too many people act as though they are impervious to infection even if they engage in unprotected sex or use intravenous drugs. Too many people also do not get tested until late in their infection, and many of those who do get tested do not return to learn their test results.

To make matters worse, an alarming number of people at highest risk of infection don't get tested for HIV. And a large number of those who become infected never seek medical attention.

The AIDS Network estimates more than 5,500 people in the region are infected with HIV and 62 percent of them are not connected with any health care.

Nationwide, the CDC estimates that of the 850,000 to 950,000 people living with HIV, 180,000 to 280,000 don't know they are infected and are at risk of spreading the disease to others. Moreover, timely medical care can prevent HIV from spreading from an infected mother to her newborn.

"What we're seeing is a steady influx of new infections and better treatments allowing those already infected to prolong their lives. It's a large number of people, and the way to deal with it is to get them connected to medical services early on," said Andrew Kiener, executive director of the AIDS Network.

Outreach workers and others say that many individuals at high risk believe AIDS is no longer a terrible disease.

That perception is fed partly by the success in recent years of the treatment regiments for HIV infection. People with AIDS don't necessarily look sick.

'Ignorance runs rampant'

Charles Hunter has AIDS, but you wouldn't know it.

He moved back home to Buffalo from Los Angeles assuming he was going to die from the disease. His doctors told him he had little chance of survival.

He even picked out a casket and a cemetery plot. That was almost 11 years ago.

"One of the things I try to get across to people is that you can be infected and, because of the medications, you don't look like you're falling apart," said Hunter, a volunteer at AIDS Community Services.

Hunter lives on the West Side but regularly hangs out in his old East Side neighborhood to talk to residents about AIDS and the importance of getting tested if you're engaging in activities that increase the risk of infection.

"Ignorance runs rampant," he said. "People are very reluctant to get tested. They fear being rejected by their church, their friends and family, even the corner stores where they shop."

Chris Voltz, marketing director of AIDS Community Services, also warned about growing complacency in the gay community.

"We're seeing a lot of young gay kids who are misinformed and feeling invincible," he said.

The Buffalo area reached a dubious milestone recently, passing the benchmark number of total AIDS cases to qualify as an "emerging community" for AIDS. The government designation resulted in a grant to conduct a rapid survey in the city to learn what changes are needed to improve AIDS/HIV prevention programs.

Barton said the information likely will confirm what front-line workers already know but should provide a more sound basis for designing efforts in the future.

"What we do know is that this has to be grass-roots," she said. "It's a war that will be fought neighborhood by neighborhood."

Multiple burdens

Outreach workers such as Hunter and Alexander say the challenge is huge.

Many of those hardest hit by the epidemic are already burdened by poverty, racism and substance abuse. Moreover, reaching them requires navigating potentially dangerous neighborhoods. It's not easy work.

"It takes a lot of time to gain their trust, and it takes courage to walk around some of the neighborhoods where they live," said Rosetta Brunner, who supervises the HIV/AIDS peer educators for the county Health Department.

Others noted that there never seems to be enough money to do an adequate job and that funding has only begun to follow the demographic changes.

"You have a situation where community agencies are competing for the same pool of dollars," said John Morgan, executive director of Men of Color Health Awareness Project. His organization hopes to collect the funds needed to buy a van for mobile outreach.

Nevertheless, established groups in AIDS services are showing signs of trying to keep up with the shifting demands of the epidemic.

Voltz said AIDS Community Services has hired more minorities, opened offices on the East Side and maintained a presence in drug courts.

Group Ministries, an outreach ministry on Jefferson Avenue, has expanded its neighborhood outreach work to include churches.

In a program called Breakthrough Sundays, the organization is encouraging faith leaders to get tested for HIV and talk openly about the disease.

"The faith community is in denial about AIDS because of the stigma over homosexuality and drug use," said the Rev. Arthur Boyd, founder of Group Ministries. "It's not that we think pastors have to be tested. It's that they can break down the stigma and start a dialogue that can lead others to take action in our community."

Alexander, a student at Clark Atlanta University, started spreading the message about AIDS prevention in 2000 when a teacher at at Hutchinson-Central Technical High School encouraged the students to do volunteer AIDS work for extra credit.

She continues to work summers here as a peer educator for the county. She's convinced the battle against AIDS is best fought by going out to the people at risk of the disease and not waiting for them to look for help.

"You've got to make the message personal, get in people's faces," she said. "I talk to someone, they talk to someone else, and the information trickles out."

TIMELINE: AIDS OVER TIME
A quick look at an epidemic's history

* 1959: A man dies in the Congo and, years later, he's declared the first known human death from human immunodeficiency virus, HIV.

* 1981: The federal Centers for Disease Control and Prevention publishes a report on an alarming rate of a rare cancer, Kaposi's sarcoma, among otherwise healthy gay men.

* 1982: The term AIDS, or acquired immune deficiency syndrome, is first used to describe a disease that attacks the immune system, leaving the body vulnerable to opportunistic infections. Fourteen nations report AIDS cases.

* 1983: The first two AIDS cases appear in the Buffalo area. Nationwide, the CDC reports 3,064 cases and 1,292 deaths from AIDS at the end of the year. A French researcher identifies the virus that causes AIDS.

* 1985: The U.S. Food and Drug Administration approves the first HIV antibody test. Actor Rock Hudson becomes first major public figure known to die from AIDS.

* 1987: After six years in office, President Ronald Reagan mentions the word AIDS in public for the first time. AZT becomes first anti-HIV drug approved by the FDA.

* 1996: FDA approves protease inhibitors that prevent replication of HIV.

* 2003: At end of 2002, an estimated 42 million people worldwide -- including 3.2 million children -- are living with HIV/AIDS. Approximately 70 percent live in sub-Saharan Africa. The CDC estimates that 850,000 to 950,000 U.S. residents are living with HIV infection, one-quarter of whom are unaware of their infection.

e-mail: hdavis@buffnews.com

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