Miami Herald - Sunday, May 9, 1999
Andrea Rosinson and Stephen Smith, Herald Staff Writers

Deborah Griffin

Two brothers. Dead.

One sister. Dead.

Mother and stepfather. Infected. Surviving.

This is what AIDS has done to Deborah Griffin's family. "Really, it destroyed the family, burying loved ones, one right after another, right after another, right after another," says Griffin, 50, who lives in Coral Springs. "It puts a wear and tear on you because by the time you bury one of them, then you've got to turn around and bury another one."

And, yes, Deborah Griffin has AIDS, too.

Last year, two decades into the epidemic, blacks in Florida accounted for nearly half of all the AIDS cases among men and three-quarters of the women -- even though only one in seven Floridians is black. And while the total number of people dying from AIDS plummeted, blacks did not share equally in that decline -- in fact, more black women died last year than the year before.

It is a crisis decimating entire families, families like Deborah Griffin's. Yet, even in Miami, which has the nation's third-highest rate of AIDS infections, there have been only piecemeal attempts by the government and the community to stop the spread of a virus that is deadlier to blacks in their prime than cancer or heart disease, bullets or car wrecks.

In interviews with more than 100 people -- patients living with the disease, their doctors, and the government and health experts on the front lines of the AIDS war -- a striking portrait emerges of AIDS as an epidemic of silence. From the political leaders, from the sick, from the pulpit:

Politicians in Florida only recently began acknowledging the scope of AIDS' toll on blacks. And, even then, much of their effort focused in one direction -- at stopping the virus' spread in prisons.

The money devoted to prevention and education is a sliver of what is spent on treatment and care -- even though such messages, when tailored to fit their audience, are effective. For every $6 the state health department spends on treatment and care, $1 is spent on prevention.

Fear and misunderstanding shackle the families of blacks infected with the virus. Relatives with the virus are asked to eat from paper plates, their children shunned. Even in death, the taboo lingers, a family member's demise often blamed on cancer or a bad heart.

And pastors of black churches in South Florida -- the bedrock of many black communities -- still widely avoid preaching about sex, condoms and drugs, their silence a reflection of conservative cultural and religious values.

"It's a severe health crisis, but there's no sense of urgency," says Evelyn Ullah, chief AIDS officer at the Miami-Dade branch of the state health department.

So AIDS remains on the loose, a tinderbox filled with some of society's most troubling, enduring issues: racism, homophobia, poverty. The result: People wait too long to be tested for the virus, until they are too sick to benefit from powerful drugs.

"We, the people, must move on this matter right now and declare that it is a national sickness," said the Rev. Jesse Jackson, who came to Miami in March to rally ministers and stands among the first national black leaders to pledge rhetorical and political might to the battle with the virus.

"The government didn't take the lead to get Rosa Parks off the back of the bus. The government didn't take the lead for the right to vote. We, the people, must take the lead."

DANGEROUS HARBINGER

Epidemic built on a pyramid of social ills

Even in its earliest days, when AIDS was viewed as a plague among gay white men and intravenous-drug users, there were clues that the destruction was headed toward the heart of the black community. An outbreak of sexually transmitted diseases like gonorrhea and syphilis swept black communities in Florida in the 1980s -- a dangerous harbinger because those diseases cause genital sores that make it easier to catch the AIDS virus, and because they indicate high-risk sexual behavior.

"Perhaps," says A. Cornelius Baker, executive director of the National Association of People with AIDS, "we can stop talking about the `changing face of the epidemic,' stop talking about `the new epidemic.' " This epidemic within an epidemic was built on a pyramid of social ills, with poverty and hopelessness at the base. Often, drugs feed the flames of the epidemic, spreading the AIDS virus among men and intoxicating women, making them more susceptible to risky sexual behaviors. And the nation's jails and prisons, their populations disproportionately constituted of black men, serve as petri dishes for the spread of the virus.

UNEVEN BURDEN

Curtis Walker Sr. trod the streets of urban Fort Lauderdale from the late 1970s through the mid-1990s, a hunter in search of heroin.

"The first time I heard about AIDS was somewhere around '79, '80, something like that, and they mentioned something about gay men," says Walker, 41, his arms thick, hands beefy, voice booming. "So quite naturally, I wasn't gay and I didn't pay that too much attention."

Then, something started happening. "A lot of my friends I was getting high with, I mean, they were dying like flies. They would tell you one day they've got AIDS, and then maybe the next week down the road, they were dead and gone. I thought -- silly me -- if I had AIDS, I would know because I would get skinny, I would get sick and then I would die."

By 1986, Walker's drug of choice had shifted from heroin to crack. After spending much of the next seven years in and out of jail, he got out in 1993 to the news that would change his life: His wife had AIDS.

"I'm almost sure that during the time I was shooting drugs, I somehow passed it along to her," he says. "I still was afraid to get tested, to be honest with you. I wasn't sure I could live with it, knowing the type of person I was, the macho image that I had with the guys that I grew up with and hung out with."

Finally, in July 1994, Walker was tested.

Positive.

In March 1995, he buried his wife -- and mourned in a fog of drugs.

Convinced that he, too, would die, two more years passed before he sought medical attention. Today, this is his medicine menu: six pills in the morning with breakfast, six pills in the evening with dinner.

"Medical services aren't that hard to get, but I think what is really hard is identifying the people that are HIV-positive and letting them know that these services are available," Walker says. "And the reason why they don't know is because some of them are just ashamed once they find out that they've got it."

All those years on the street, Walker never saw many pamphlets about AIDS, never heard much from official sources about it. So this is his mission today: He leads a group of outreach workers from Broward House, the private Fort Lauderdale agency that gave him shelter and sustenance as he battled drugs and AIDS. They troop along the same streets that were once Walker's haunts, toting bags filled with condoms and fliers about the virus.

Dr. Walter Lang examines HIV-positive Alphonse Moise of North Miami, now a peer counselor: 'I want to help,' Moise says.

He wants to reach people like himself, he says, people who never got the message about AIDS.

GETTING THE WORD OUT

`Prevention messages just didn't get through' As the epidemic lay siege to black communities across the United States, health experts and politicians stumbled. Strategies that had worked among gay men were imported to communities where people infected with the virus had dramatically different needs. Pamphlets featuring pictures of men embracing weren't persuasive in Walker's neighborhood.

"As we were all learning how to fight this epidemic in the late '80s and early '90s, we spent a tremendous amount of time on prevention messages for gay men," says Tom Liberti, Florida's AIDS czar. "In the meantime, the epidemic is being seeded in the black community, and the prevention messages just didn't get through."

It wasn't enough for a state clinic to hang a sign proclaiming that AIDS tests were available, everybody welcome. That might have worked in South Beach, Victoria Park or other gay enclaves in South Florida, but it wasn't going to work in black neighborhoods, where fears of rejection, being stigmatized or even subjected to violence kept people from getting tested. Today, the prevention messages have become more culturally sensitive. For instance, the U.S. Centers for Disease Control and Prevention recently tested a radio AIDS campaign that sounds for all the world like the mini-soap operas that play on Tom Joyner's popular syndicated show. Part of the reason so many of the early AIDS campaigns were directed toward gay men was simple: It was the squeaky-wheel syndrome.

"You can't go into a gay bookstore or neighborhood, and not see something on AIDS," says Phill Wilson of the National Black Lesbian and Gay Leadership Forum. "You go into a hard-hit black neighborhood in Los Angeles, Miami, Belle Glade -- places where the rates are sky-high -- and you won't see a billboard or poster anywhere. It's as if the disease doesn't exist."

The leaders who could be instrumental in changing that have been conspicuous in their silence -- until recently.

Last year, the Congressional Black Caucus declared AIDS among blacks a national state of emergency, the first time such a powerful collection of lawmakers had publicly embraced the issue.

In Florida, Tony Hill, a Democratic state representative from Jacksonville, championed legislation this year to make HIV testing in state prisons mandatory. The bill failed. Hill got $250,000 for a statewide HIV minority task force, though, and $750,000 for AIDS education campaigns in Florida's minority communities.

But in South Florida, which has nearly half of all the AIDS cases among blacks in the state, there has been no call to arms among black elected officials. Sometimes, that's because elected officials don't even know there is a crisis. It took a conversation last year with the Rev. George McRae for Dorrin Rolle, a Miami-Dade commissioner who runs a social services agency, to realize the devastation AIDS has caused.

"You hear about it, but you don't focus on it because it's not in your family," says Rolle, who ended up donating $5,000 from personal and campaign accounts to the AIDS ministry at McRae's church, Mount Tabor Baptist in Liberty City. "I'm admitting that. I've been like a lot of leaders in the community: If something is not presented to you on a monthly basis, you think it's OK. But it's not OK, and it's rampant in my community."

A TELLING REFRAIN: The greatest enemy: is the stigma

The fear is betrayed by the faces and words of the seven women gathered one bright spring morning inside the Children's Diagnostic and Treatment Center in Fort Lauderdale.

Their greatest enemy, they say, isn't the virus. It is the stigma and the misunderstanding.

Like the woman who refused to get care for seven years, worried someone would see her going into an AIDS clinic.

Like the woman afraid her son's father will kill her if he discovers she has the virus.

Like the woman whose mother has made it clear she prefers that her daughter eat from paper plates and use plastic utensils -- the same mother who no longer visits her daughter's home for Sunday dinner. The thought of this makes the woman sob. She and a cousin went to be tested a week after her uncle's funeral.

RISK UNSPOKEN: Both positive.

Five family members have been infected with the virus.

Share our stories, the women said. But don't use our names. In interviews with dozens of people infected with HIV, it is a telling refrain.

It is especially true for women infected by their husbands or boyfriends, women whose behavior placed them at no obvious risk. Between 1985 and 1997, women went from 7 percent of AIDS cases to 22 percent -- and those women, overwhelmingly, were black.

Last year in Florida, while the total number of AIDS deaths dropped 19 percent, deaths among black women rose by 2 percent.

"I don't want a woman not to seek care and treatment because she's afraid the folks will think she was a bad girl, that she was in the street shooting drugs," says Dr. Lila Smith, a University of Miami psychiatrist who is doing a study of black women who are HIV-positive. "They're not doing crack, they're not IV-drug users."

For a majority of black men and women with AIDS, the source of their infection is listed on medical charts this way: NIR. No identified risk. That means the infected were unwilling or unable to say how they caught the virus.

That denial can be a destructive coping mechanism. Alphonse Moise of North Miami knew he'd been infected, but didn't seek treatment. Instead, he plowed his energies into a wholesale business. The consequences of neglect were devastating: By the time he finally sought care, Moise was down to just 90 pounds.

Today, he is robust, working 20 hours a week at the clinic that saved his life.

The consequences of cases like Moise's are seen in places like Broward General Medical Center, the big public hospital in Fort Lauderdale. There, overwhelmingly, blacks are being diagnosed with the virus at a point when it has already progressed to full-blown illness.

"People should not be at this stage of their disease and just be being diagnosed," says Joyce E. Stone, director of AIDS services at Broward General.

Karl Goodkin, a UM psychiatrist, has been studying patients infected with HIV for a dozen years. He's in the midst of research analyzing how the loss of a close relative -- a child, a spouse -- affects a woman's ability to fight HIV.

"We have seen stigma be a major concern," Goodkin says. "We'd have to say we consider all the women who have participated to be brave souls. There's a significant barrier to even picking up a flier about the study -- there's a concern someone may see them picking up a flier on HIV and avoid them for that reason.

"They may be living in a situation where a family member or partner is so concerned about HIV that if they found out they were positive, they might be the subject of physical abuse and might not be able to stay there any longer."

Then, too, there is the legacy of Tuskegee. The 40-year experimentation on 399 black men in Alabama who were denied treatment for syphilis in the name of science has fostered an abiding suspicion of health-care providers, especially those bearing experimental medicines. Many of those men, deliberately untreated by U.S. government researchers, died from syphilis -- until the experiment was revealed and stopped in 1972. Such fears seared anew with the arrival in the late 1980s of AZT, the first drug to specifically target AIDS. But, for many, the drug proved terribly toxic, and some families believed it was guilty of hastening the death of relatives.

"The result of all of this is an unwillingness to go to public health clinics for screenings, treatment," says Baker, of the national AIDS group. "So you have an unfettered epidemic of something that, in our country, could be eliminated."

SPIRITUAL GUIDANCE: In search of an AIDS ministry

The Rev. Marilyn Usher's church rises in the heart of Overtown, a Miami neighborhood that shoulders one of the heaviest AIDS burdens in South Florida. About five years ago, two white ministers came knocking on the door there, at Greater Bethel AME Church. They told Usher and the church's senior pastor that people with the virus had been coming from Overtown to the Beach for spiritual guidance because no churches in their neighborhood had an AIDS ministry.

"They called me in and asked if I knew anyone who would be interested in heading HIV/AIDS," she says. "I didn't know what it was." She had considered it a gay, white-male disease because she didn't know anyone who had AIDS. "I was dumb about HIV/AIDS in the black community ... had not even seen a pamphlet on it."

Blacks, the two Miami Beach ministers were saying, had come to them because their pastors weren't sensitive to their needs. "They feel isolated and would really like to be able to come to their pastor to talk about it, their sexuality," Usher recalls.

After that, she started Greater Bethel's. Since then, she has tried to enlist other churches -- with little success. For some, the epidemic poses a dilemma: How do you talk about condoms and sex outside of marriage when such things clash with traditional beliefs? And how do you broach the subject of homosexuality, often a forbidden subject?

Earlier this year, Usher and other ministers invited black churches in Miami-Dade to participate in the annual Black Church Week of Prayer for the Healing of AIDS as a way to raise awareness and to enlist other congregations in the fight. Organizers invited hundreds of churches to a rally in Homestead. Only 20 participated, most from smaller churches.

"If we had dealt with it 20 years ago, if we had not been afraid to talk about sex, if we were not afraid to deal with homosexuality, we would not be in the situation we're in now," says the Rev. E. Malone Porterfield, pastor of Restoration Tabernacle in northwest Fort Lauderdale.

Outreach workers from Broward House happened upon Porterfield as he stood outside the low-slung, pink building that houses his congregation on Sistrunk Boulevard in Fort Lauderdale. His church sits across the street from a patch of tree-shrouded concrete known to the city as Lincoln Park. On the street, they call it Trippin' Park.

Yes, he told the outreach workers, he would like to work with them.

"If you're not going to listen to us when we say stay away from sex when you're not married, then, please, listen to us when we say wear a condom," Porterfield says. "Our thing is to stop death."

TRAGEDY AT HOME: Family dies, one by one

The sight of her brother in a Baltimore hospital sucked the breath right out of her, Deborah Griffin recalls. "I remember thinking, `Why does he look so wrinkled and old?' " she says.

He was the first one in her family to die. Larry Pearman was 40. Not long after, another of Griffin's brothers fell ill. Besides the disease, the brothers shared this: an addiction to drugs.

"I can remember him suffering so bad, not eating, not taking his medication right, not going to the doctors, not living in a clean environment, I mean just giving up," Griffin says.

And so Keith Alston was the second to die, in his late 30s. His death in a grimy boarding house reflects the everyday harshness of so many AIDS victims: the struggle to keep roofs over their heads, food on their tables, clothes on their backs.

"If a person doesn't have anywhere to live, I don't care what kind of medicine they get, it's not going to be sufficient," says Georgia Foster, president and founder of Think Life, a Broward agency that provides services and housing to people with the virus. "The ones who I think have fallen through the cracks are the ones who have these issues: poverty, illiteracy, substance abuse, mental-health problems."

Griffin continues her story. "Then, my baby sister got it. Her name is Adrean Alston."

It was the early 1990s. With two brothers dead and a sister dying, the only relief Griffin found came in a syringe: heroin.

"I can remember taking care of Adrean, how she just went down, down, down," Griffin says. "She died the same way Keith died: in a hospital, gasping for breath."

On Dec. 26, 1990, Griffin was called to the health department in Baltimore. A man she'd been dating developed AIDS. Like her, he used heroin. Like him, she found out, she had the virus.

For the next six years, Griffin told no one and did nothing to stop the virus from colonizing more and more of her body. "I figured I was going to die the next day," she says. "Or the day after that. Or the day after that."

She ended up in South Florida three years ago. "My mother said, `I can't do it, I can't bury you, Deborah. You need help, you need serious help.' And that's when she told me she had the virus."

Griffin heeded her mother, coming to Fort Lauderdale to break her addiction and to deal with the virus.

All those years, back when she was getting sicker and sicker, information about the services that could have helped her never reached her.

"I'm going to tell you why I feel like money should be spent for education and prevention -- because they're coming up with new stuff every day. And if you're not educated to what's available to you, you don't do it. And too many people aren't getting the message."
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