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For blacks, AIDS silent epidemic

Nationwide, HIV rates among blacks have doubled. In Florida, 1 in 46 has the virus. Still, many think AIDS is a white gay disease.

By MARCUS FRANKLIN and LISA GREENE
Published March 14, 2005

Graphic: AIDS in Florida

TAMPA - Lorenzo Robertson, a 42-year-old black man with AIDS, hoped his one-man show, me, myself & i, would spark more open dialogue among black Americans and help stop the disease's spread.

But when Robinson performed in a Tampa church this month, only 14 people showed up.

And most of them knew a pastor there.

"AIDS is a word that causes fear," Robertson said during the show. "AIDS is a word that is not used a lot in the black community."

But AIDS is exacting a devastating toll upon it.

The disease many still associate with gay men is rising at epidemic rates among black men and women - and Florida blacks are among those most at risk.

HIV infection rates among blacks doubled nationwide over a decade, scientists announced last month at a national meeting on AIDS, while rates among whites held steady.

The result: With 2 percent of black Americans now infected, they are 10 times as likely to be HIV positive as whites.

In Florida, that stark disparity is already clear. More than half the HIV/AIDS patients in Florida - which has the third-highest number of AIDS patients in the country - are black, even though blacks make up only 15 percent of the population.

That means 1 in 346 Florida whites are HIV positive, as are 1 in 176 Hispanics.

The HIV infection rate for Florida blacks: 1 in 46.

Last month, the Florida health department announced a 24 percent increase in AIDS cases in 2004, the largest jump in a decade.

Robertson and other AIDS advocates and scientists say perception has lagged behind the reality. It's taken too long for prevention efforts to focus on African-Americans, they say, and too many don't know the disease is a serious threat. Those who do often are unwilling to talk about it.

"The primary challenge is really the denial in the black community that AIDS is impacting our community," Robertson said.

"It has not been part

of our consciousness'

Each day, HIV patients file into the specialty care clinic at the Hillsborough County Health Department seeking help to keep the disease at bay. Almost half are black, and about 20 percent are Hispanic, estimated Dr. Jeffrey Nadler, the University of South Florida professor and infectious disease expert who is the lead doctor for the clinic.

These days, about 40 percent of them are women.

Most are poor.

Many are drug users.

"The epidemic has much more clearly moved into people of color," said Nadler, who has been caring for AIDS patients since the earliest days of the disease, when he was a doctor in New York City treating patients with a strange, deadly pneumonia.

For a long time, nobody thought of AIDS as a black disease - or a disease anyone worried about, except gay men in large cities such as San Francisco or New York.

But the disease began hitting black communities hard as early as 1984, when 24 percent of U.S. AIDS patients were African-American, said Phill Wilson, executive director of the Black AIDS Institute in Los Angeles.

"It has not been part of our consciousness," Wilson said. "The perception that AIDS is primarily, if not exclusively, a white gay disease persists to this day. As a result, traditional black institutions have been slow to respond. It gave the virus an opportunity to get out of control in our community. The virus had free reign for a number of years."

Wilson said the primary culprits include:

Unprotected sex among people in relatively small sexual networks, because blacks tend to have sex with other blacks.

IV drug use, with addicts sharing needles with others in the same segregated neighborhoods.

Even now, Tampa resident John Matthews said he sees women showing signs of the disease who not only haven't been tested, but don't seem to know about HIV. One woman's husband died from AIDS, but she still hadn't been tested.

"I see a lot of girls I used to know, and they are skinny," so stricken by the disease he hasn't recognized a few, said Matthews, who is black. "I tried to talk to about five different girls to get tested."

Matthews, 52, has a reason for his suspicions: he has been living with HIV since 1989. He thinks he knows which woman infected him, even though he's a former heroin user who shared needles with others. These days, he's in drug treatment and said he's vigilant about caring for his HIV.

"It's my life and I've only got one," Matthews said. "I'm going to do everything I can to keep the virus from consuming my body."

Despite his efforts, Matthews said he had no idea so many black people have HIV.

"I thought mostly young whites were catching the disease," he said.

Now that the disease has infected so many African-Americans, poverty and lack of access to health care make it more likely to spread. People are more likely to have unprotected sex if they haven't been tested and aren't getting medical care, Nadler said.

The same problems make the disease harder to treat. HIV no longer means a ghastly march into a lingering death, beset by one infection after another. But it is not curable, nor easily treated with a drug "cocktail in a martini glass," as Nadler says his new patients often think.

Patients often must take several drugs. The drugs can cause side effects, and sometimes must be taken with or without foods, or have other stipulations.

When a patient is homeless, Nadler asked, how do you give her a medicine that needs refrigeration? When a patient is in a shelter, will he carry an HIV drug with him, when its discovery by other shelter residents could mean he is shunned or beaten?

The clinic has an "adherence specialist," whose job is to help patients take their medicines. Some people come to the clinic each week just to get pill boxes filled, so they know which pills to take each day.

Nadler worries about race, too. Most patients are black, most providers white.

"I'm concerned about that, and that they're not as willing to share things," he said.

For some black people, distrust of the medical establishment lingers. Many think AIDS information and a cure are being kept secret, a Rand Corp. survey said in January.

In the survey, 16 percent of blacks said they think the disease was made in a government lab, created to "control" large numbers of black people.

Many African-Americans also disagree about one of the most publicized reasons for infections spreading among blacks, and especially to women: Black men living straight publicly, but secretly having sex with other men "on the down low."

"The DL question has overshadowed the real issue," Wilson said. "Does it exist? Yes, of course it exists. Is it a uniquely black phenomenon? No. We don't even know the magnitude of the DL phenomenon. There's no data to tell us to what degree black men being on the DL contributes to the spread in black communities."

One problem is black communities are under-resourced to fight the disease, Wilson said.

"African-Americans are 53 to 54 percent of new U.S. HIV/AIDS cases as of 2003, but clearly nowhere close to 53 to 54 percent of the federal HIV/AIDS budget goes to the black community," he said.

In Florida, there's not enough money to fund AIDS prevention and treatment overall, but many groups have targeted blacks, Hispanics and those most at risk, some AIDS advocates say.

In St. Petersburg, a program called YES, for Youth Education Services, gave out HIV information at this year's Martin Luther King Jr. Day parade. The group targets people ages 13 to 24, going from homeless shelters to detention centers to offer HIV tests and information. YES educators hand out condoms and graphically worded cards (one reads: "Doin' it Raw? Get Tested!") to encourage HIV tests.

Trying to reach younger minorities can be even harder because of the tendency of young people to think nothing bad will affect them, said Steven Reigns, YES team coordinator.

"The first thing is other people have it, they don't," Reigns said. "They can't define who "other' is, but it's definitely not people in their phone book. But with 1 in 46 African-Americans in Florida infected, chances are at least one person they know has it."

The AIDS Services Association of Pinellas tries to reach out to blacks, but also to other minorities, said Anthony Barros, coordinator for one of ASAP's programs. For example, he said, the group has a bilingual support group.

"It's important to understand that HIV is growing among communities of color, not only African-Americans," he said.

At the state Department of Health, 1998 marked a shift in how public health educators fought the virus, said Tom Liberti, chief of the department's HIV/AIDS bureau. That was the year the department held a black leadership conference in Clearwater and got legislators to fund a $750,000 media campaign targeting minorities.

Liberti's office has a staffer who coordinates minority prevention efforts, and several more posted around the state. They have pushed prevention during Black Beach Week in Daytona Beach and at the annual football game between Florida A&M University and Bethune-Cookman College.

The office last week announced $4.7-million worth of grants for prevention programs around the state. Most of those grants target minorities, Liberti said.

Liberti thinks such efforts are making a dent. While black Floridians accounted for half the new HIV infections between 1998 and 2004, the number among blacks still dropped 24 percent during that time.

"There's no question about the severity and the disparity," Liberti said. "But I think we're starting to see some encouraging signs."

Those who have it urged

to talk about the disease

Robertson, the former Tampa man who learned he had AIDS in 1997, thinks his message can help stop more infections. Those who are HIV positive should talk about it with family, he said.

"Talk about it like it's another health issue, not a taboo to discuss in the community," said Robertson, a liaison for the state's HIV/AIDS bureau and West Palm Beach community organizations.

That's L.R. Thomas's belief. The 37-year-old Hillsborough woman learned she was HIV-positive in 1999. "My family never left me," said Thomas, who has a son and a daughter.

Thomas, who attended Robertson's show at Breath of Life Fellowship Community Church, said she doesn't know how she contracted the virus.

"I wanted to come and listen to what he had to say, his own personal story," she said of Robertson. Watching his show made her feel "there is light at the end of the tunnel."

Many African-Americans are in a "denial state," Thomas said.

"A lot of people are afraid of death," she said. "But the disease is destroying our black communities. It's like a tidal wave."

Marcus Franklin can be reached at mfranklin@sptimes.com or 727893-8488. Lisa Greene can be reached at greene@sptimes.com

[Last modified March 14, 2005, 01:29:07]


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