AIDS Delegates Hear Spiritual, Social Concerns Amid Protests
Episcopal News Service. August 7, 1990 [90199]
Julie A. Wortman
During breaks between sessions at the Sixth International Conference on AIDS, held in San Francisco, delegates crowding into conference exhibit areas gazed at spiritual resources like "Our Neighbor Has AIDS" and "Stations: A Meditation on AIDS," in addition to the usual literature on advances in condom design and testing for the AIDS virus.
At last year's Montreal conference, persons living with AIDS and advocates demanded a chance to put their concerns before the scientific community -- opening up this year's meeting to social and spiritual concerns for the first time.
Bob Nelson of the Interreligious Coalition on AIDS commented at a worship service at San Francisco's Grace Episcopal Cathedral this year, "As if the disease were not enough, we have to battle the concurrent epidemics of fear, prejudice, and a world full of government bureaucracies and politics."
A plenary attended by 1,000 on the first afternoon of the four-day conference, titled "Ultimate Questions at the Heart of AIDS," moderated by California's Bishop William Swing, began with a play dramatizing the impact of AIDS on the human spirit written by Oakland playwright Danelle Morton. The characters are angry, grief-stricken, confused, resigned, and cynical.
"The performance helped put into context all the medical and scientific information -- that what we are really talking about is people," commented the Rev. Canon Nan Peete of Atlanta, a member of the Episcopal Church's Joint Commission on AIDS.
"The stories, which were all true, showed me how we have isolated and alienated our brothers and sisters," Peete added. "We need to reclaim the fact that we're all part of the human family."
The next evening, delegates filled Grace Cathedral for a service celebrating the vitality of the human spirit -- even in the face of death. At the end, the congregation clasped hands and swayed to the soulful strains of "We Shall Overcome" in a scene reminiscent of the 1960s civil rights movement.
For many, the AIDS crisis has indeed evolved from an epidemic into a movement for social justice, and this year's international gathering was helping to make that clear.
H.M. Ntaba, chief of health services for the Ministry of Health in Malawi, where more than 7,000 AIDS cases have been reported, drew attention to global economic inequities and their impact on AIDS research and treatment in the developing world. "In Africa," Ntaba said, "some annual health-care budgets are as low as $1 per person." Researchers reported limited successes in reducing pregnancies in women infected with the AIDS virus and improvements in care for AIDS patients in the sub-Sahara region despite special funding from charitable organizations.
By contrast, in the United States, where 83,000 people have already died of AIDS and an estimated million more are infected, the cost of caring for AIDS patients now exceeds $1.5 billion a year, an amount that AIDS activists say is still not enough. But Arnold Relman, editor of the New England Journal of Medicine, said adequate funding for AIDS care and research is not the only issue.
"While this is obviously a conference about AIDS," Relman commented in a plenary session on the ethics of drug development and approval, "we must never lose sight that we must be pressing for a better health-care system, one not dominated by racial and economic injustice."
Conference participants frequently cited instances of such injustice. At a protest outside the conference, ACT UP's Women's Caucus and other groups chanted "NIH, we think you're vile -- women need clinical trials!" referring to the National Institutes of Health.
At the same time, a woman with HIV -- the scientific name for the AIDS virus -- told the conference about her unsuccessful efforts to find a federal drug-testing program. Through such programs, patients can get access to drugs that have shown signs of being effective in fighting the AIDS virus. In an exasperated tone she asked the medical professionals, "Why are women denied access to trials?" Despite sympathetic nods, none could give her a justifiable reason.
Debra Fraser-Howse, executive director of the U.S. Black Leadership Commission on AIDS, pointed out that blacks are also currently underrepresented in drug trials.
"AIDS is not limited to one group," Fraser-Howse observed. "The AIDS community is as universal as the world community." Because people are concerned about AIDS, she said, the disease can be used to focus attention on discrimination now at work in the U.S. health-care system, discrimination that now gives a black man in Harlem less of a chance to reach age 65 than a man in Bangladesh.
While the National Coalition for the Homeless was among groups that boycotted the conference, volunteers urged that "safe housing" be created for homeless people living with AIDS. In New York City an estimated 20 to 30 percent of the city's 80,000 homeless men, women, and children carry the AIDS virus, a coalition leaflet stated. Social Security disability benefits and other forms of assistance are not enough to pay most rents, so many unemployed people living with AIDS wind up without a roof over their heads.
Churches are helping to make a difference. Jack Plimpton, director of the Diocese of Los Angeles' AIDS Ministry, talked about a 30-unit residence that his diocese is building. "It will be affordable, and the tenants will not have to worry about being evicted because they have the disease," he said. Called Project New Hope, the residence is being financed with state and federal funds through a nonprofit corporation.
John Campbell said he came to the conference to help staff the AIDS Interfaith Council of Southern California's booth because he needed a meaningful way to observe the first anniversary of his lover's death. Campbell, a man who looked to be in his 30s, said he went to the coalition to find help in looking at AIDS through the eyes of faith.
"I've had people at this conference come up to our booth looking for the same thing," he said. "I'm glad we're able to help put them in touch with someone in their denomination who will be sympathetic," said Campbell, who is a member of a nondenominational church.
Perhaps one of the most discouraging pieces of information, particularly for those convinced that the best way to fight AIDS is through education and prevention, was evidence that adolescents and young adults are continuing to be infected with the AIDS virus through sexual activity and intravenous drug use. A study of more than 5,500 Canadian college freshmen indicated that most were sexually active, but relatively few used condoms regularly.
Some of the more than 10,000 delegates who attended the conference left San Francisco disgruntled over the tenor of the meetings, and especially over disruptions directed at Dr. Louis A. Sullivan, secretary of health and human services, and at U.S. immigration policy said to discriminate against persons living with AIDS.
It seemed clear that a purely scientific conference can no longer embrace the full range of obstacles facing those fighting AIDS. Few of those attending could shrug off the critical spiritual and social dimensions of the crisis as easily as one Danish immunologist could. "In my country," she said, "the government makes sure everyone is cared for -- we have no need for an involvement by community groups or churches."