June 2000

Report of the Standing Committee on HIV/AIDS to the 2000 General Convention of the Episcopal Church: AIDS, Racism, and the Church

The Charge

The 72nd General Convention resolved (among other actions pertaining to HIV and AIDS) that the Episcopal Church Center “convenes consultations during the triennium to (1) examine in depth the impact of HIV/AIDS in communities of color, (2) clarify the role of racism in AIDS among those communities, and (3) identify specific actions which Episcopalians in communities of color and in the majority community must take in response to HIV/AIDS. [The full text of this and the other AIDS-related resolutions were attached as an appendix to this report.]

Taking Resolution A046a as its charge, the Standing Committee on HIV/AIDS held hearings in a cross-section of communities across the United States and in Honduras. Testifying were people with AIDS and HIV, clergy, public health professionals, and representatives from AIDS service organizations.

The Context

This is the new face of AIDS, the second epidemic:

  • African-Americans make up 13 percent of the United States population; they account for about 57 percent of all new infections with human immunodeficiency virus (HIV), which causes AIDS.
  • Hispanics, the fastest growing major population group in the United States, make up 12 percent of the US population; they account for 21 percent of new AIDS cases. The AIDS case rate per 100,000 population is nearly four times higher for Hispanics than for non-Hispanic whites.
  • Globally around half of all new HIV infections are in people aged 15 to 24; 25 percent are in people under 22. Every hour two Americans under the age of 20 are infected.
  • African-American children represent 58 percent of the cumulative pediatric AIDS cases; Hispanic children represent another 23 percent.
  • Although between 1995 and 1996 AIDS death rates for the total US population declined 23 percent, the decline for African-Americans was only 13 percent.
  • Although the percentage of HIV and AIDS cases among Asians and American Indians appears to be less than 1 percent, there are particularly serious problems in getting accurate statistics for these groups. For instance, because many American Indians have Hispanic names, they may be being counted in that group.
  • In all groups, rates of infection with HIV are rising fastest among women.
  • Although the incidence of AIDS has dropped in the Midwest, the West, and the Northeast, it has not dropped in the South.

Federal treatment guidelines call for early and aggressive treatment of HIV and AIDS with combination therapies.Yet according to a 1998 survey of doctors, doctors with less experience tend to treat the greatest proportion of women and people of color with HIV; women and minorities receive therapy later in their disease progression; they are also more likely to receive either mono-drug therapy or two drug therapy rather than the state of the art triple combination therapy.

“AIDS is a disease that holds a magnifying glass to some of America’s ugliest social problems,” says Dr. Thomas Coates, professor of medicine at the University of California, San Francisco. Racism is one of those problems. So is poverty. It should not be a surprise that the groups that are now being hit hardest by HIV and AIDS are those that traditionally have been marginalized.

The Hearings

After formal testimony and informal discussions in Indianapolis, Atlanta, Miami, San Pedro Sula, Seattle, and the Wind River Reservation in Wyoming, the Standing Committee reached some inescapable conclusions:

In many minority communities, the disease is still literally “unspeakable.” As a result, myths continue to circulate in those communities. There is, for instance, a perception among Hispanics that they are not at risk. In all minority communities, the problem is complicated by homophobia.

At the first hearing in Indianapolis, witnesses spoke of the continuing fear and prejudice that keeps those infected from seeking testing or services or even sharing their status with family or community. At the last hearing on the Wind River Reservation in Wyoming, one person said, “Where you’re from, AIDS is no longer so awful; in Wyoming, if you have AIDS, you’re a terrible, terrible person.”

Simply getting information is hard. Technology could be a means of empowerment, but though libraries may have access to the Internet, library terminals are too public. In smaller towns and rural areas and on reservations, it’s impossible to remain anonymous in accessing services. The African-American AIDS Project in Cheyenne, for instance, had to change its name to the African-American Wellness Project and cover lupus, sickle cell, diabetes, and heart disease as well in order to get the AIDS message across. In the Native American community, “People here are modest; they don’t like to talk about private things.”

Neither do Hispanics. In Honduras, witness after witness spoke of the need for secrecy about their diagnosis. In the Haitian community in Miami, battered by accusations early in the epidemic that Haiti was the source, denial of the very existence of HIV is common, though there are Haitians who are attacking the problem of education and support head-on.

To access help, “people need a safe place.” “It’s difficult to go for help,” said a Native American, “because things are said that shut us down.”

Despite the surging infection rates among women and minorities, AIDS is still identified as a gay issue. That is one of the reasons that it’s “unspeakable.” And “the church doesn’t know about the rise in infection rates among women. Or the church has forgotten.” One witness in Miami said, “We need to dispel the myths. Sex is a normal function. There are no guilty. There are no innocent. This is a health care issue.”

Definition of risk is an issue for some doctors. In Wyoming we heard of women dying because their doctors refused to test them until it was too late: Because they were in monogamous relationships, they weren’t supposed to be at risk. Similar problems were reported in Honduras. In Miami we heard of doctors who simply didn’t ask about risk factors. Name reporting is a deterrent to diagnosis and treatment. Because Wyoming has name reporting, its statistics show only 200 cases of AIDS in the state; yet service providers in Cheyenne say they deal with that many and more in their city alone.

“Think about the person; the disease is not necessarily the primary concern,” said a witness in Miami, where there are 600 homeless people infected with AIDS who are on the waiting list for housing. Another witness in Miami pointed up the importance of economic empowerment, a theme that also resonated in San Pedro Sula, where people must test negative before being hired or can be fired when diagnosed with HIV.

In Seattle, Street Outreach Services works on a model that treats drug addiction as a mental health issue, not a moral issue. In Georgia, partner notification is a big issue for teenagers, who are at greatest risk but for whom relationships have particular emotional resonance. In Indianapolis, one person stated that for many persons of color getting food, housing, clothing, and drug rehabilitation has to come before attention to HIV, especially when the infected person is a mother who must first take care of her children’s needs. On the reservation, “alcoholism colors everything”; altered states make it hard to make rational decisions.

In the county where Miami is, not one single provider of childcare/preschool programs in all of South Dade would take HIV+ children.

“Racism must be addressed or we’ll never get to AIDS because of the walls of mistrust,” said the pastor of Sojourner Truth Unity Fellowship Church in Seattle. She used the term “oppression sickness” to describe the turning of one group against another in its own quest for acceptance. In the African-American community, there is a distrust of government health services because of memories of the Tuskegee Experiment. There is similar distrust of state and federal services for similar reasons among Native Americans.

In Florida there is little state support for the problems of the “immigrant population” in Miami. In the words of one Miami witness complaining about lack of data on the etiology of the epidemic, “If the HIV affected/infected community … were primarily middle class to affluent whites, we would have some of this information by now. It is difficult not to conclude that racism and classism play significant role in the neglect which we have faced.” At Wind River, “there is a perception of the health care system as white.”

One person noted in Atlanta, “Ten years ago it was a gay issue and ‘not our problem’; now it’s a black issue, and ‘not our problem.’”

Reaching young people is vital. On the reservations there is now a troupe of young people called the Spirit Warriors who are spreading the prevention message very effectively.

The role of the church has been ambivalent. Considering “church” in the generic sense of religious institutions, its work has not necessarily been supportive. At the first hearing in Indianapolis we heard that there is a lack of support for HIV prevention and for infected persons in churches in minority communities: “It’s not mentioned except in judgment.” In Miami we heard, “Let this topic become an acceptable item of conversation in faith communities. Deal with — confront — our discomfort at talking about sex and sin and drug abuse.” That witness did recognize that many churches are already struggling to make ends meet.

Throughout the series of hearings, we studied what seems to work in providing services to people infected with or affected by HIV and AIDS and looked for ways the church can support those efforts.

What Works

  • Efforts of service providers to build trust and compassion, rather than detachment
  • Assistance to clients with other parts of the “system,” accessing survival as well as treatment services á Collaboration between service providers
  • “Tools for survival” programs for HIV+ people, including peer counseling and empowerment programs: “you’re more likely to care about your health if you have self-esteem”
  • Programs that recognize differences between and within communities á Needle exchange programs á Anonymous testing
  • Peer prevention education
  • Programs that go where the affected persons are.
  • Comprehensive approaches that include economic empowerment
  • An atmosphere where real issues can be talked about

What the Church Can Do

  • “Churches should stress the Gospel call to heal as a way around the barriers of stigma and politics.” á “Confront our discomfort at talking about sex and sin and drug abuse.”
  • “Provide leadership for support groups for families, individuals, for grandmothers raising grandkids and taking care of dying daughters and sometimes sons.”
  • “Reach out, open up, run some risks.”
  • “Churches are in a unique position to support needle exchange programs.”
  • “Faith communities can better respond by leaving their dogma and tracts at home and just being compassionate.”
  • “Use a ‘clergy-to-clergy’ approach to gain support, within the same denomination if possible.”
  • “If clergy don’t support programs, find active lay people.”
  • “Create an atmosphere where real issues can be talked about (e.g., sex) so that values like commitment and honesty can be addressed.”
  • “The best thing faith communities can do is stop avoiding the subject.”
  • “Churches and church leaders need to be more informed and educated if they are to teach others.”
  • “Christians should be more inclusive in providing pastoral care.”
  • “You have to show compassion. You have to show love.”

RECOMMENDATIONS

The Standing Committee on HIV/AIDS recommends that the Episcopal Church:

  • Place special emphasis in the coming triennium on the Gospel call to healing.
  • Make a concerted effort to confront the damage HIV/AIDS is doing in minority communities-and to confront the damage done by failure to speak out about the problem.
  • Make a special effort to build trust among people of all colors, so that HIV/AIDS prevention efforts will be well received in all communities.
  • Move beyond the boundaries of parish and ethnic community especially to carry the prevention message to young people of all colors.
  • Recognize that for those most at risk, AIDS is only one of the aspects of their lives that need attention, but it is an aspect that undermines all the others.
  • Speak out in favor of anonymous testing and needle exchange as prevention and treatment options of significant importance.
  • Speak out honestly, moving beyond discomfort, about sex, drug abuse, and HIV/AIDS.
  • Support in each parish culturally sensitive and to the extent possible culturally representative care teams. ¤ Make a special effort to educate doctors and other health care professionals about the importance of recognizing new groups at high risk, not only minorities but also older people.
  • Take a more active role in promoting action to confront the current face of HIV/AIDS by other churches as well as our own.