Ultimate fighting

Complacency remains a constant enemy for the activists and health professionals who strive to counter the threat of HIV/AIDS

by Kathleen Hughes

At South Kingstown High School, students took an in-depth approach with help from health educator Karen Johnson

Ryan White was a hemophiliac from Kokomo, Indiana, about 60 miles north of my hometown of Indianapolis. We were both 12 years old when Kokomo classmates, parents, and teachers began protesting his return to school after an initial near-death bout with a scary new disease called AIDS. On the local news, Ryan looked skinny and he had spiked hair. He wore acid-washed jeans with a matching jean jacket. He smiled crooked and had very thin lips. Ryan looked two to three years younger than he was. His books were huge under his arm, like when I carried three or four.

The media focused on the fact that Ryan was a hemophiliac, that he didn't contract the disease through the injection drug use or gay sex that had made so many men in big cities sick. Still, people in Kokomo thought they could get AIDS if Ryan sneezed on them.

"He kept saying, `Mom will you call and see if I can go to school,' " Jeanne White recalls. "So I called the principal. He said `No -- have you called the board of health? People are about to put quarantine signs on your door.' "

That was 1984.

Ryan lived long enough to leave Kokomo for a more welcoming town, just outside Indianapolis, to attend prom, to meet Michael Jackson and Elton John, and to lobby Congress for AIDS funding. He died the year I graduated from high school and left for college -- 1990.

TODAY, THE MAJOR source of federal HIV/AIDS funds, $1.5 billion in total, is the Ryan White Care Act. Jeanne White and US Senator Jack Reed, who co-sponsored this year's re-introduction of the funding provision, came to Providence in late August to tour several community-based HIV/AIDS agencies and host a panel discussion on the disease, which Reed described as "an opportunity to talk about the changing face of HIV/AIDS."

How are HIV and AIDS changing? Most people would say that the situation looks better all the time -- it's now a chronic, rather than a terminal disease, because of the drugs that can nearly eliminate traces of the virus, as with Magic Johnson. This is particularly true in Rhode Island, where the mortality rate from AIDS fell 90 percent between 1992 and 1999, compared to the 70 percent national average. HIV/AIDS-related funding looks particularly good here, too, as the state Department of Health (DOH), area hospitals, and community-based agencies secured more than $11 million last year for prevention, testing, treatment, and support.

Yet the local HIV/AIDS community of doctors, nurses, public health officials, advocates, politicians, and the afflicted don't like this slant. They say the message it sends is not to worry about HIV/AIDS, because there are drugs to temper it, explains Paul Loberti, the DOH's chief administrator of HIV/AIDS programs. This message skips the part of the story in which a single dose of those drugs amounts to more than 20 pills, some which cause debilitating headaches, diarrhea, dizziness, bloating, nausea, and other side effects. "If you think you know what it's all about, you really need to think again," says a 38-year-old property manager from Pawtucket, who has been HIV-positive for 11 years.

Perhaps worst of all, the message of triumphing over AIDS can encourage complacency -- already evidenced in the fact that while the overall rate of HIV infection is falling, the number of AIDS cases is rising among adolescents and minorities, according to US Centers for Disease Control statistics. On a national level, AIDS was the sixth leading killer in 1998 for people between 13 and 49 (claiming 10,882 lives, including 22 in Rhode Island), following accidents, cancer, heart disease, suicide and homicide.

Can you blame the HIV/AIDS community then, for refusing to focus on their success and drawing attention, instead, to the needs of youth, the at-risk, and the HIV-positive? Because they're living longer, the HIV-positive need to know more about their own health and the support available to them, says Ron, a 43-year-old, HIV-positive outreach worker/AIDS activist from Woonsocket. The at-risk and children need to know the basic, real facts of transmission; they need to ask questions; and they need to be tested. "I believe in education," Ron says. "Knowledge is power and . . . we need to talk to our children."

MOST OF THE rising number of adolescent HIV infections occur through heterosexual intercourse, says Dr. David Pugatch, medical director of the Adams Clinic, an adolescent AIDS clinic run by Miriam Hospital and AIDS Care Ocean State. Seven out of 10 high school seniors have had sex at least once, and only half say they used a condom, according to the Washington DC-based American Association for World Health. In Rhode Island, one quarter of new HIV infections last year occurred in people younger than 22, and the CDC reminds us that risk behaviors are generally initiated during the late teens.

The HIV/AIDS community is trying desperately to get an effective prevention message to teens, but a major barrier remains in the way: it's very hard for teachers and parents to talk with kids about sex. Rhode Island was the first state in the nation to legally mandate an HIV/AIDS curriculum within a continuous K-12 health program, explains Jackie Harrington, coordinator of AIDS and sexuality education for the state Department of Education. The real work of communicating the message, however, trickles down to superintendents, principals, and teachers, who vary widely in their support for, and skill with, a careful, explicit HIV/AIDS prevention curriculum.

Consider the differences between two randomly selected districts -- Newport and South Kingstown. The superintendent in South Kingstown, John Harrington (no relation to Jackie), is quick and enthusiastic in discussing his district's HIV/AIDS curriculum. In response to a litmus test of HIV/AIDS support -- do your schools do condom demonstrations? -- Harrington confidently answers, yes, they take place in the high school health classes. Students at South Kingstown High also made an AIDS quilt after studying artist and AIDS activist Keith Haring. "We're not just learning the facts [of AIDS]," health department chair Victoria Tefft says. "We're learning what motivated Keith Haring's work."

In contrast, Robert Power, the director of student support services for Newport schools, laughs nervously when asked about condom demonstrations in his school. "I am 99 percent sure that we're not doing condom demonstrations down here," he says. Asked to describe the critical components of the district's AIDS education program, Power says he isn't sure. "It hasn't been a topic of discussion lately," he says.

Simply telling kids about condoms won't guarantee they'll use them, of course, but if educators can't say "condom" with a straight face, chances are that students won't listen. As far as Pugatch is concerned, "Abstinence-based prevention programs, although really well-intentioned, are not enough . . . We really can't bury our heads in the sand about the fact that two-thirds of students have been sexually active by the end of high school."

The HIV-positive property manager asserts that the prevention message must come from peers, because teens often feel "talked down to, not talked to." One local youth group agrees. Inner Circle, a statewide HIV-prevention planning group, is comprised of 21 teen and young adult leaders who represent a diversity of ethnic, religious, gender, and sexual orientations. The group sprung from its adult counterpart, Rhode Island Community Planning Group for HIV Prevention. In addition to advocating more useful HIV/AIDS education and resources in schools, Inner Circle promotes condom availability in high schools and the formation of a youth issues committee to review schools' HIV/AIDS curriculum. The group's statement concludes, "The problem, as we see it, is that we have far too little input in the policies that address these issues."

Pugatch and Dr. Timothy Flanigan, head of the Chester Immunology Center at Miriam Hospital, have another solution. Project Shield targets adolescents who could be at risk of HIV because of their sexual practices. After responding to an ad or meeting an outreach worker, interested teens and young adults complete a questionnaire. If deemed eligible, participants attend sexual education and discussion sessions three times over six months. Every time Shield participants -- more than 100 in three years -- attend a session, they repeat the questionnaire and receive a stipend.

"Young folks need skills to avoid infection," Pugatch says. "They need to know how to negotiate for safe sexual behaviors. They need to know more than just the proper use of condoms." Women are particularly in need of these skills, since they're more susceptible to infection. According to CDC statistics for 1999, 40 percent of female adolescent HIV infections occurred via heterosexual intercourse, while only 8 percent of adolescent males were infected through straight sex.

If parents talked sensitively with their kids about sex and if kids listened, the problem of sexually transmitted diseases, teenage pregnancy, and HIV/AIDS would unquestionably diminish. Advocates talk about churches and community centers encouraging and helping families with this dialogue. Still, it's slippery. "Parents tell me that [HIV/AIDS] is out there, but that it's not happening to our kids," Loberti says. "Yet 65 percent of sexually transmitted diseases come from 13 to 24 year olds." This lingering parental ignorance infuriates Jeanne White. "This disease is preventable," she says, "and we're not trying to prevent it."

CONDOM EDUCATION and availability, and programs like Shield, are officially known as "harm reduction" initiatives. For intravenous drug users -- one of populations facing the greatest risk for HIV in Rhode Island -- harm reduction assumes they will shoot up regardless of what prevention messages they receive. So to help IV-users stay HIV-free, a harm reduction program distributes clean needles. Such programs were desperately needed six years ago, when Rhode Island's rate of HIV infection from intravenous drug use -- 52 percent -- was among the highest in the nation. This rate was partially due to a vigorously applied state law, which made it a felony to have a medical syringe without a prescription.

In 1994, Dr. Josiah Rich joined the immunology department at Miriam Hospital and, with support from some legislators and the Rhode Island Medical Society, he immediately went after the dirty needle problem. As Rich and his supporters hunkered down for a lengthy legislative debate, he also started needle exchange and needle prescription programs. Both programs are critical: one for putting clean needles on the streets, the other for removing contaminated ones.

The programs also give addicts entry to a broad network of care they wouldn't otherwise receive. The exchange has a site at Broad Med, a primary care clinic on Providence's south side, Atlantic Mills in Olneyville, and Traveler's Aid mobile unit. The prescription program, also at Broad Med, "requires a one-to-one patient/physician presence that encourages discussion on addiction and drug use," Rich says.

The needle prescription program has led one visitor, a mid-thirties-looking male resident of a Cranston shelter, to abandon his previous habit of using any needles -- dirty or clean -- that he could find. The man, who says he's been shooting drugs for eight years and only recently learned he's infected with hepatitis B and C, likes having a doctor available to him at Broad Med and enjoys speaking with his counselor. "Confidentiality is important," he says. "This is an outstanding program."

In 1998, Rich's needle bill passed as a compromise and the crime of syringe possession dropped from a felony to a misdemeanor. State senators Rhoda Perry (D-Providence) and John Roney (D-Providence), and representatives David Cicilline (D-Providence) and Gordon Fox (D-Providence), worked hard to convey the idea that the drugs inside syringes, not the syringes themselves, addict and kill users. In states where needle possession is legal -- such as Connecticut -- the legality isn't linked with increased drug use, Rich adds.

Some officials, such as Providence Mayor Vincent A. "Buddy" Cianci Jr., and Police Chief Urbano Prignano Jr., were convinced. Others, such as state police superintendent Edmond S. Culhane Jr., remained adamantly opposed. Because of this, it wasn't until September 1 that possession of a syringe became completely legal. "We went from having the worst laws [concerning syringes] in the country to having the best," Rich says.

Flanigan, Rich's boss at Miriam, found a similar battle behind bars. Because of Flanigan's work at Rhode Island's prison, the Adult Correctional Institutions (ACI), HIV testing is now mandatory upon entry. Although 75 percent of ACI inmates favor the testing, such a policy is very rare in the US. This strong support is certainly due in part to the fact that 28 percent of inmates are HIV-positive -- a situation that may have gone undetected if not for Flanigan's test.

When inmates leave the ACI, there is a discharge program designed to reduce recidivism, as well as an education project for the children of incarcerated and drug-addicted women. Dubbed RISE, the program offers mentors for these children and sponsors private high school tuition. In May, Flanigan's work was recognized with a prestigious $100,000 community health leadership award award from the Robert Wood Johnson Foundation.

AS INNOVATIVE prevention and harm reduction initiatives take shape, new support programs for the infected are also emerging. People who are living with HIV longer then ever need better health education and support for the drug regimens' sometimes heinous side effects. Linda LeBreux, a nurse, designed Inside Edition, a 12-week adherence and general health education program at St. Francis Chapel in Providence. "If you were only living two years, what difference did it make to know what `viral load' means . . . and what difference did nutrition or side effects make?" asks LeBreux. "People are living longer and it's more important to have a good knowledge base."

Ron, who assists Inside Edition, says that not long ago the program would have supported its participants differently. "Ten years ago, support groups would have been to console your grieving," he says. "Now they're talking about living. It's no longer just a pity party anymore."

A woman, HIV-positive for 13 years, describes the side effects of her drug regimen as paralyzing. "You don't even see time, you see pills on the clock," she says. She suffers headaches, nausea, dizziness, and diarrhea so severe that she carries a change of clothes in her car and at the office. When she "went on holiday" from this regimen, with the oversight of her doctors, "It was like being alive again." When her viral load and T-cell count began to indicate HIV's returning strength, this woman returned to a different drug regimen -- luckily, with fewer side effects.

Others don't fare as well. A new study, run through Miriam, seeks to help improve drug adherence for those who struggle with it. Direct Observed Therapy, or DOT, sends outreach workers to deliver meds daily to the homes of participants with a history of substance abuse, mental health problems, or plain forgetfulness. After six months, project director Michelle McKenzie explains, the visits taper until the patient can adhere to the regimen by him or herself.

One woman, who has been in DOT since January, says she loves it. "I have a real bad memory," she says. "Sometimes I don't care if I take my drugs or not. Now [with DOT], I take them every day." Last November, this woman, who says she contracted HIV from a tattoo artist, spent a month on life support when she contracted pneumonia. When her DOT course is over, the woman, who lives with her two children, ages seven and nine, says, "I hope I can do it myself."

RHODE ISLAND'S PARTICULAR success with HIV/AIDS is attributable to unusual cooperation between agencies. In some other cities and states, tensions plague communities, HIV/AIDS agencies, and departments of health, because the DOH frequently acts either as a watchdog or a gatekeeper for funds. Such tension is largely inconspicuous in Rhode Island, where collaborations between the DOH, AIDS Care Ocean State, Miriam and Rhode Island Hospitals, AIDS Project Rhode Island, the Catholic diocese, and others, occurred because people saw a common goal, Loberti says. Of course Rhode Island's diminutive size helps, too, since it's easier for community members, health workers, and officials such as Loberti to get to know and trust one another.

Credit is due to specific individuals as well, such as AIDS Care Ocean State's executive director, Paul Fitzgerald, whose tireless HIV/AIDS networking was inspired by his son, Kevin, who died of leukemia in early 1988 at age 15. Organized during the last year of Kevin's life, Family AIDS Care and Treatment Center (FACTS) received its first federal grant eight months after his death. "Kevin was a powerful kid, a smart kid. He knew all about FACTS," Fitzgerald says. The Matisse-like cut-out house logo for FACTS, and now the logo for AIDS Care Ocean State, was designed by Kevin.

FACTS house grew from a pediatric AIDS clinic at Hasbro Children's Hospital, to a separate home for HIV-positive foster children, up to age five. Today, given AZT and other therapies, vertical transfer (from HIV-positive mother to child) is minimal and FACTS' nursery includes foster children with any number of other medical, behavioral, or familial challenges. In 1998, Fitzgerald merged FACTS' clinic, nursery, and housing and support network with Providence-based Sunrise Community Housing. The result: AIDS Care Ocean State, on Providence's south side, has a $3.1 million budget; a full-time staff of 57 including doctors, nurses, and social workers; and a network of services, ranging from housing, to the Broad Med clinic on Broad Street in Providence for primary care and HIV/AIDS testing and treatment, to, finally, partnerships with Miriam and Rhode Island hospitals.

DESPITE THE PROLIFERATION of drug therapies that stall the onset of AIDS, the organic growth of care and support networks for hard-to-reach populations, and refashioning of prevention messages for adolescents and young adults, the battle against AIDS is far from complete. This is illustrated by Flanigan's simple reminder: "AIDS is still a fatal disease . . . There is no cure."

But to believe that continued work against the disease is driven only by the lack of a cure, in the sense of a vaccine or antidote, reduces HIV/AIDS to an element of ongoing research in a lab. And HIV/AIDS is nothing in the lab -- a microscope slide -- compared to what it is in a home with two kids, a homeless shelter, a car on the way to work, a bar after hours, handfuls of multicolored pills twice a day, every day, for the rest of a life.

A comprehensive cure for HIV/AIDS is infinitely more elusive. To truly cure this disease, one must treat the situations that engender infection, such as poverty, abuse, racism, illiteracy and prejudice. As Rich says, "Anti-retroviral treatments aren't going to end these things."

Kathleen Hughes can be reached at khughes[a]phx.com.