Feature

AIDS BEYOND THE LAB

As AIDS makes devastating inroads in a nearby community, Stanford tries to reach across a geographic and economic divide.

BY SALLY LEHRMAN

Just five miles from the well-equipped clinics on campus, past the tony restaurants where venture capitalists congregate, past the artsy clothing stores that sell blouses for $300, past the mansions lining University Avenue and over the bridge crossing San Francisquito Creek, rutted streets and strewn glass mark the edges of East Palo Alto. In this part of town, the life-giving potential of AIDS treatment breakthroughs such as virus genotyping, protease inhibitors and triple-drug therapy seem inconsequential.

"AIDS is looked at in this community as just one more thing that we can do nothing about," says David Lewis, an AIDS outreach worker. On the cracked sidewalks where he hands prostitutes condoms and bleach in the middle of the night, backs addicts in their struggle to escape drugs, and helps sick people gather enough hope to take all their medicines at all the right times, the peaceful glades and corridors of Stanford couldn't seem farther away.

Beneath the wave of optimism surrounding the recently heralded increase in AIDS survival lies a gritty truth: The virus that causes the disease is making devastating inroads in a population who has little access to the new drugs or the means to benefit from them.

In October, the federal government reported that deaths from AIDS last year had nearly halved. Armed with treatments that attack the virus from a variety of directions, men once debilitated by the infection are regaining their health and going back to work. "We are talking about chronic suppression and perhaps immune reconstitution," says Dr. Andrew Zolopa, whose practice as director of the Positive Care Clinic started in Stanford Hospital, right next to the emergency room. Now, from new offices down Welch Road, he has seen hospitalizations dropping by as much as 80 percent.

But Zolopa also cares for plenty of people who aren't enjoying dramatic recoveries. Longtime patients, the pioneers who put their bodies on the line with early experimental therapy, tend not to respond to the new drugs because they have tried so many others. And across the freeway and down the Peninsula, very different groups of people with the virus don't have the social, economic or situational resources to take advantage of the complicated new regimens. Even though AIDS in the United States still claims more lives from gay white men than any other population, the disease is spreading fastest among poor African Americans and Latinos. In California, these ethnic groups accounted for nearly half of all new AIDS diagnoses over the most recent 12 months. A large portion, 38 percent nationally, contracted the disease from contaminated needles used for injecting intravenous drugs.

The typical AIDS patient at the university used to work in a nearby Silicon Valley technology company and favor treatment in Palo Alto because of its easy parking. Now he or she just as easily may have no job at all, no home and no car. Even basic health care is likely a luxury.

As the epidemic shifts targets, Stanford tries to adjust. At the Willow Clinic in Menlo Park ­ where about 40 percent of the patients are Latino and one-half of those speak only Spanish, and two-thirds of the clients rely on MediCal to pay for services and the same proportion either use injection drugs or are recovering from them ­ and Valley Medical Center in San Jose ­ where 90 percent of patients are people of color and 40 percent are women ­ new programs aim to more effectively bring the skills and resources of the university out into the neighborhoods. Staff members are struggling to bridge not only disparate agencies and resources but also a geographic, economic and sociocultural divide. Programs must address areas such as overall access to health care; mental health and drug use; family and community support systems; and culturally embedded attitudes toward sex, illness and sexual orientation. Above all, to be successful in both its research and clinical care, Stanford also has to overcome what some see as a history of negligence and the lingering suspicion it has bred.

Stanford "comes in, takes the blood and studies it, and you can't get what comes out of it," Lewis says, explaining his East Palo Alto neighbors' hesitation in going to the university for help. Stanford doctors admit they've stumbled in some past outreach efforts. Now both sides speak optimistically of improving relations in a dramatically changing environment.

In new collaborative efforts with county clinics, Stanford researchers are learning about and addressing key factors in survival such as general health care, psychological support, regular clinic visits and adherence to a drug regimen. On campus, the Stanford Hospital Integrated HIV program brings together specialists in virology, genetics, epidemiology and community outreach to piece together the complex picture.

Willow Clinic, which opened a little more than a year ago, teams university faculty and residents with physicians from San Mateo County and the Veterans Affairs hospital, fosters interaction between specialties and delivers primary care, gynecology, pediatrics, internal medicine and AIDS treatment, all in one place close to the freeway and to East Palo Alto.

South of campus, Santa Clara County's Partners for AIDS Care and Education (PACE) program now operates under the same umbrella as the Positive Care Clinic. Zolopa, who recently became director of the county AIDS program, also continues as head of the on-campus site.

Zolopa says a historical "political divide" has separated Stanford from the surrounding communities. The goal is to tie Stanford and its faculty organically to organizations that have an excellent track record and are already serving the medically indigent well. At Valley Med, for example, "We are putting in some Stanford faculty to function as one team with PACE to make sure that engineers at Silicon Valley companies and East San Jose injection drug users are getting the same services and the same access to medications," he says.

Priya Haji, a Stanford graduate and executive director of Free at Last, a community service center in East Palo Alto, says such a strategy is vital. "The whole field of HIV treatment is at a crossroads. Physicians have to let go of traditional ways of doing medicine," she says. For instance, Free at Last helped San Mateo County design a plan to offer HIV testing in crack houses at 2 in the morning. "The bottom line is the physicians can't think this stuff up because it's outside their paradigm," Haji says. "The real problem is trusting other people to see where you can't."

Addressing the population changes in AIDS will require time and patience and a new way of doing business that involves building in safety and trust, says Michael Edell, executive director of the AIDS Community Research Consortium in Redwood City. His organization contracts with universities, drug companies and other research institutions to conduct clinical trials involving as many as 300 patients annually throughout San Mateo, Santa Clara and Santa Cruz counties.

Over recent years, the consortium has helped Stanford enroll women and minorities into its studies through outreach, individualized patient attention and feedback from advisory boards. "You can't partner with the community and ask for their data without providing them with nurturing, with a voice and with an opportunity to participate in the design of research studies," Edell says. "I believe Stanford has a sincere desire to be involved in the community, but it's a long haul to gain any community's trust."

Some hurdles extend far beyond the school itself, he and Stanford clinicians agree. Many patients carry a deep-seated suspicion of research institutions and public health services, the outgrowth of long-term negligence and incidents such as the Tuskegee experiment. In that infamous 40-year study launched in 1932, 400 African American men in Alabama were given fake treatments for syphilis while government doctors watched their illnesses progress. The legacy has been profound. In a 1995 survey by researchers at Harvard University, more than one-third of black church members in five cities agreed that government researchers had deliberately concocted the virus that causes AIDS as a way to kill off African Americans.

With AIDS drugs costing about $15,000 a year per patient and strict treatment regimens placing their use even further out of reach, it's little surprise that people in poorer communities view themselves as guinea pigs for a medical establishment eager to sample their blood but provide little in return. Critics in East Palo Alto accuse Stanford of awakening to the burgeoning incidence of AIDS across the freeway only when federal funding institutions demanded that universities diversify the patients they included in clinical trials. Stanford hired Luther Brock, a Vietnam veteran, former state prison inmate and a co-founder of Free at Last, to do outreach. He worked at the university for more than a year, building relationships and signing up people to participate in studies.

"I deal with people .
I don't care about the blood ."

Brock says that among his clients he encountered not only cynicism about Stanford's intentions but also a preoccupation with issues that seemed far more pressing than HIV. So he decided to start at the beginning. He got people into drug recovery programs; he made sure they had food. He took his clients to the Mental Health Association to get money for housing and to Catholic Charities to sign up for food and clothes. Men and women with immune systems weakened by AIDS could qualify for nutrient-rich foods, a bus pass and a discount on rapid transit trains. "That continuum leads to enrollment in clinical trials," says Brock, who passes out hugs along with the other provisions. "I deal with people. I don't care about the blood."

He said he faced other problems. Staff members at Stanford kept referring to his clients as "those people." Guards would ask what they were doing hanging around. East Palo Alto residents would get what they felt were intrusive phone calls at home, pressuring them to participate. After leaving the university, Brock wrote a letter to the Stanford AIDS Clinical Trial Unit community advisory board asking its members to listen to his clients' complaints.

"We took it to heart," says Mike Donnelly, a member of the national community constituency group for AIDS clinical studies and a participant in the local advisory board. "For me, the unit has come a long way [since then] in talking to the community. There's of course a way to go."

At Willow Clinic, specialists in every discipline meet each Thursday to talk about ways to draw more people into services and keep them. "The outreach thing is what we've really worked on," says Dennis Israelski, associate clinical professor of infectious disease at Stanford and medical director of the San Mateo County AIDS program. Israelski oversees care for about 600 patients with HIV, most of whom are poor. For him, outreach is a way of life. He's usually on the truck that offers HIV tests in the middle of the night. He makes house calls when people are afraid to come into the hospital. If drug addiction is blocking someone's ability to eat well and stay on medical treatment, he sits by his patient's bedside and brings home the reality of the grim reaper waiting close by.

With carefully planned combinations of protease inhibitors and treatment "cocktails" hitting hard, the virus level in most patients' blood quickly declines and it's possible to bring AIDS under control. "You've got the tiger in the room," as Israelski puts it.

Though quite powerful in people never before treated, the treatments are demanding ­ 20 to 50 pills delivering five or six medications a day. Usually three are for HIV, the rest for related infections; some must be swallowed twice a day, some three times; some must be refrigerated, some kept at room temperature; some taken with meals, some not. It's a schedule that takes over the day; a regimen that even doctors admit they would find hard to maintain.

Whatever their economic situation, patients may be contending with lack of transportation, a drug addiction, child care problems, language barriers, community disdain of the illness itself or plain inconvenience. Side effects of medication can include headaches, nausea, vomiting, severe diarrhea, cholesterol problems and nerve damage in the hands and feet. Without a regular place to sleep, food to eat and people to lean on, keeping on schedule becomes a heroic act.

And a few missed medications can lead to disaster. HIV develops mutations that improve its resistance to therapy. In an analysis of seven patients at Stanford, for example, virus levels jumped after patients skipped doses of the protease inhibitor saquinavir. A few weeks after two patients missed three days, they developed a mutant strain of the virus. The study was too small to draw any significant conclusions, but researchers said the results show the dangers of even a short lapse in medication.

"AIDS is looked at in this community as just one more thing that we can do nothing about."

Israelski is urging Stanford to bring its capabilities to bear on getting medicine to people and getting people to take their medicine every day. "At the university, research is done to ask a scientific question ­ What is the pathogenesis of the disease? ­ but not what is the best way to treat people," he explains.

How well a particular person will keep to a drug schedule may be the most important unknown; clinicians say they find it impossible to predict. Israel-
ski, for one, suspects some of his patients use crack cocaine as many as three times a week, but he says he knows they still take their medicines. In a study at the University of California-San Francisco, epidemiologists led by David Bangsberg found that homeless people were able to stick to a complicated schedule of pills and to benefit without developing drug resistance. Researchers at Stanford are teaming up with county AIDS specialists and community caregivers to study the dynamics of drug regimen compliance and to design some solutions for people who fall off therapy.

Terrence Blaschke, professor of medicine and molecular pharmacology, is using a container rigged to monitor pill-taking patterns in order to find out when people really take their drugs. Together with other Stanford specialists in treatment exposure, behavior and virology, he is evaluating patterns of viral resistance, treatment interaction with a patient's metabolism and the influence of missed doses on HIV proliferation.

Stanford psychiatrist David Spiegel and Associate Professor Cheryl Koopman are working with San Mateo County AIDS director Israelski on a study to evaluate the effectiveness of support groups in improving quality of life for people with AIDS. They hope to see whether giving patients a chance to express their feelings will help them stay on their medications by allowing them to overcome depression and tendencies toward high-risk behavior. The project has been very successful in making links with people in East Palo Alto, says Cheryl Gore-Felton, a clinical research fellow who is leading the women's support group. More than a quarter of the 102 participants are African American and one-sixth are Latino; nearly one-third are women.

"We think our relationship with the community is really improving," Gore-Felton says. With AIDS viewed less as a life-threatening disease and more as a chronic condition, the support groups can give people the tools to live happier, more comfortable lives. "They don't think we're just going in and conducting research and coming away with our pearls of wisdom and they don't get anything back," she says. Project leaders are dreaming up other collaborations, such as offering AIDS prevention education in
high schools.

Israelski hopes to draw on Stanford expertise even more, turning to leaders in cultural anthropology to study behavior, specialists in communication to develop ways to keep patients informed, and historians to explain the relation between present-day health attitudes and community folklore. He'd like to work with the gynecology and obstetrics department to improve treatment of women with HIV.

He and others say AIDS medicine can no longer separate itself from the concerns of everyday survival on the streets. Treatments must build from the ground up, from the needs of the whole person ­ whether they stem from psychological distress, drug addiction or plain hunger. For Stanford, this approach is especially important because such a short distance away, the contrast is stark.

"Five miles down the road, there are people who are living different, and you can't seem to climb out of the hole," outreach worker Lewis says. "If people have no hope, why is it important to get up in the morning and take these drugs?

"With the most brilliant minds in the world over there, we ought to come up with a process to get people compliant," he says. "Let's put our minds together and use the expertise that we have. We call it 'using the knowledge that came from Yale and jail.' " ST

Luther Brock is co-founder of Free at Last, a community service center that helps people find food, clothing, transportation and aid for their drug addictions and medical problems.

David Lewis' AIDS outreach work includes handing out condoms to prostitutes in the middle of the night, and supplying bleach to drug addicts to clean their needles.

AIDS Beyond the Lab (Plain text)

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