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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

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The New Scarlet Letter: A for AIDS
Fighting the Shame and the Silence

http://www.neac.org/

Report of the Standing Committee on HIV/AIDS
to General Convention 2003

When someone finds out you’re HIV positive or have AIDS … you can lose your wife, your kids, your job, your business partners, and the support of your church. Even going to county courthouse for welfare and to apply for help in paying for medications is risky. HIV and AIDS have not moved to Africa and Asia. They’re still here, and they’re still deadly. In fact, there is new evidence of rising HIV infection rates in North America. Death rates are going up—here, in the United States—particularly among vulnerable and forgotten populations.

HIV and AIDS are not just health problems. Nor are they just someone else’s health problems. They are economic and human rights problems—problems exacerbated by complacency, and by the refusal of all of us, in and outside the Episcopal Church, to deal honestly with their causes and the means to their prevention. Peter Piot, who heads the U.N. AIDS program raises the major underlying question that has confronted this committee:

“Why, 20 years into the epidemic, are people with HIV still the targets of hate?”

Sometimes, the problem is sheer ignorance. At other times, it’s because of who they are: “not our sort”: “People are not always marginalized because they have AIDS; some have AIDS because they are marginalized.”

Sex, Race, Drugs, and Violence

Men have sex with men. Many of those men also have sex with women. Many people of both sexes and all colors are intravenous drug users. Many people have been brutalized, both as children and adults. All of these people and the people they have sex with are at high risk of contracting HIV. Until we are willing to confront our discomfort about what all these people do, and talk honestly about how they can make themselves, and us, safer, we put everyone at risk.

Between 1994 and 1998, 920 young African-Americans who had sex with men (MSM) were surveyed and tested in San Francisco. Of them 150 (16%) tested positive for HIV. Of those 150, 139 did not know they were positive—and 99 thought there was “no chance” or it was “unlikely” that they could have HIV. In a larger CDC survey of men 15 to 29, 60 percent of infected white MSM and 70 percent of infected Hispanic men did not know they were infected—and almost 60% of these perceived themselves to be low or very low risk.

“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 a significant role in the negative which we have faced.”

– Testimony, Committee Hearings in Miami

Points to ponder:

§                                 If all these men, in the most high-risk group and many in the most AIDS-conscious city in the country, went undiagnosed, what does that suggest about the real—as opposed to reported— incidence of HIV and AIDS in the United States?

§                                 How could these men think they were not at risk? Could it be that the larger society is unwilling to tell the truth about HIV and AIDS because that would mean talking about sex, which is uncomfortable?

Although MSMs are still at most risk—their HIV infection rate is nine times higher than for heterosexual men and women—heterosexual transmission is rising faster. In part, this is a correlate of the fact that some MSMs also have sex with women, often their wives. In part it is a correlate of the fact that homophobia is rampant in minority communities, so minority MSMs are more reluctant to identify themselves as gay. So HIV/AIDS are decimating minority communities.

The result is that while in 1982 people of color accounted for less than a third of all AIDS cases, today, although they make up just over 30% of the US population, they account for 62 percent of all those living with AIDS (not just HIV)—79 percent of all women and 57 percent of all men. AIDS is now the leading killer of Latinos aged 24 to 44. Blacks alone account for almost half of all new AIDS cases.

What about other minorities? Although the “other” minority category accounts for only 1 percent of reported infections, a Native American group reports:

Many infected are not treated because of the stigma surrounding it in their communities…. Poverty, isolation, and poor medical care also contribute. Infected Indians may not have easy access to a clinic to be tested for HIV, or to obtain drugs for treatment…. As a result, a person with HIV can spend years passing the disease on to others.

As for Asian Americans and Pacific Islanders (AA/PI), former Surgeon General David Satcher believes “There is a great under-representation of the incidence of HIV/AIDS in this population,” in part because of “linguistic isolation”: the group covers 40 cultures and 100 languages. Such people not only lack information about HIV transmission, they are more likely to believe myths about who is at risk. Cultural conditioning against discussing sex is strong. Satcher said,

I don’t know any community that readily discusses sexuality, especially homosexual and bisexual behaviors. It is not a stretch to say that homophobia leads many gay/bisexual men to participate in high-risk behaviors and that stigma associated with HIV/AIDS leads many to not seek testing or treatment for their disease.

That is, assuming testing and treatment are available: U.S. government auditors themselves have found that communities of color receive substandard AIDS care compared with whites.

It’s also true that no one wants to talk about the fact that some people take drugs, either. In particular, very few people—especially in the federal government—are ready to deal with the undoubted fact that HIV and AIDS are spread among injection drugs users (IDU), and ultimately their sexual partners, by dirty needles. In 1990, before the city of New York allowed programs allowing users to get clean needles, about 50 percent of the city’s drug injectors were infected; by 2000 the ratio had fallen to 20 percent—except in Queens, Staten Island, and Long Island, where there are no such programs.  Study after study has shown that it makes economic as well as health sense for the federal government to pay for needle exchange programs. In the words of one commentator: “Washington’s problem? It’s courage.”

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What is even more rarely discussed is that partner violence, depression, and a history of childhood sexual abuse interact with the basic problems of sex and drugs to increase risky sexual behavior and thus the risk of HIV and AIDS. Gay and bisexual men are almost five times more likely to engage in high-risk sex if they have had to deal with a spectrum of what the CDC calls psychosocial health factors, such as childhood sexual abuse. Women who report early and chronic sexual abuse are seven times more likely to engage in risky sexual behaviors than women without abuse histories. Half of the women with HIV are victims of domestic violence. U.N. Secretary General Kofi Annan has said, “The gender dynamics of the epidemic are far-reaching due to women’s weaker ability to negotiate safe sex.” Among young people, the homeless are particularly vulnerable; of 1.2 million runaways annually nationwide, 35 percent leave home because of incest and 53 percent because of physical abuse.

“AIDS is a disease that holds a magnifying glass to some of America’s ugliest social problems.”

– Thomas Coates, M.D., professor of medicine,
University of California, San Francisco

Gender and Age

The last paragraph speaks to another major factor in the fact that HIV and AIDS are turning around to attack the United States once again. Age and gender make a huge difference, no matter what color you are. Under 20 or over 50? You’re at high risk at any skin shade. Female? Even worse.

The rates of HIV and AIDS are rising twice as fast among people aged 50 and over than among younger adults. The epidemic is no respecter of income, either: 17% of the AIDS cases in Palm Beach County, Florida, are over 50. Why the surge in infections in this group? For one thing, older people tend to think of condoms as preventing pregnancy, not disease, so they feel safe without them, even as doctors push Viagra and promote more sexual activity. To make matters worse, for people over 65, the disease tends to lead twice as quickly to death, perhaps because many already have impaired health.

For another, even when older people arrive at the doctor’s with AIDS-related symptoms like wasting, dementia, and pneumonia, the doctor, thinking the symptoms relate to age alone, fails to test for HIV, and is not comfortable talking about sex with someone older.

“That young doctor is sitting across the desk from someone who looks like his grandmother, and they don’t point out the risks.”

– Jane P. Fowler, national coordinator,
National Association on HIV over Fifty

Although no one is safe, non-whites over 50 die more quickly than whites once they have AIDS. One theory for this is that they simply receive less effective therapy. They are also more invisible, and often more isolated.

At the other end of the age spectrum, it is still true that typically half of those with HIV became infected before they were 25. Most teens in the U.S. as well as elsewhere lack even the most basic information they need to protect themselves. A growing number of teenagers and young adults declare themselves “virgins” but engage in oral and anal sex because they think that is “not really sex,” and “a form of abstinence.” Many don’t even realize that HIV is sexually transmitted—particularly worrisome because young people are becoming sexually active much earlier, with one study finding that by 12th grade, more than 60 percent of students are sexually active. An amendment to the Welfare Reform Act of 1996 that increased federal funding for promoting chastity prohibits funded programs from promoting the use of condoms or contraception, making it even harder to push prevention in this age group.

Homelessness is a major risk factor for young people. It’s estimated that 26 percent of gay teens are forced from their homes because of their sexual orientation. Once on the street, they are subjected to physical violence, including rape, drug and alcohol abuse, and prostitution in order to stay alive.

Once again, too, race and gender matter: In Houston in 1999, 78 percent of the cases among 13Ð19 year-olds were African-American females.

In general, the UN estimates that around the world, about one-third of those currently living with HIV/AIDS are aged 15 to 24—and most of them do not know they carry the virus.

Although 70 percent of new HIV infections are still among men, the rates of increase are rising much faster for women. AIDS is one of the leading causes of death for all U.S. women aged 25 Ð 44, and it is the third leading cause for African-American women that age. And the greatest risk factor for American women, of whatever color, is their male sexual partners:

Many HIV prevention programs continue to direct women to abstain from sex, reduce their number of sexual partners, and use condoms, which ignores the reality that many women are monogamous and at risk as a result of their partner’s behavior.

The gender disparity is very clear in the Latino community, although the AIDS case rate for Latino men is almost three times that for white non-Hispanic men, for Latina women the rate is six times higher. For Latino men, heterosexual contact accounts for approximately 7 percent of HIV cases, but for women it accounts for 44 percent.

Health care, or lack of it, is often the problem. Women tend to get diagnosed later than men, often not finding out they have HIV until they become ill. When a gay man goes to the ER with chest pain, the doctor is likely to think of AIDS-related pneumonia; if a woman goes, she has the flu.

“Many people, including doctors, still wrongly assume that AIDS is a disease for gay men … in New York and San Francisco … in Africa … for people who sleep around … for junkies … for other people besides women.”

– Elinor Nauen, “AIDS: A Women’s Disease”

In one state alone, Massachusetts, the percentage of women with HIV/AIDS has almost tripled over the last decade, from 10% to 30% of all cases. In some communities, including Amherst and Holyoke, women account for more than half of HIV/AIDS cases. The problem is especially acute among women in poorer communities that have high numbers of immigrants.

Piot of the UN has labeled the surge in women’s infections a rights issue: “Risky actions—including women’s sexual subordination, rape, prostitution, and a double standard for marital fidelity—are encouraged when women’s rights are ignored.” Another commentator believes that for women especially, “the stigma is growing.” Because society in general sees HIV and AIDS as preventable, the attitude becomes, “You knew better, why did you get it?”  Women fear being isolated in their communities; most have children, whom they want to protect from school gossip.

Invisible: The Prisons and the Rural Areas

In the U.S. correctional system, the prevalence of AIDS is six times higher than in the general public. Many ex-offenders do not know whether or not they are infected with HIV. And unlike the world outside, incarcerated women are three times as likely as men to be living with AIDS (outside, men are four times more likely to be infected). In Florida, as an example, officials are reluctant to screen inmates for HIV because of the high cost of medicine, but “If you don’t provide care to those people, if you don’t provide education, it really is a problem. People do not stay in corrections forever.”  Meantime, the disease is spread by injecting drug use, tattooing, and consensual sexual activity. Yet although peer-led HIV education programs have proved highly effective, they are offered in only 13 percent of state and federal facilities and 3 percent of city and county facilities.

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Only about six jails nationwide distribute condoms; elsewhere prisoners save plastic wraps from sandwiches to try to protect themselves. Meanwhile, although sex while in prison is still an institutional offense there, condoms have been available in Canadian federal prisons for 10 years; one official said, “Fighting the spread of HIV is more important than enforcing morality when the activity is occurring.” In Europe the percentage of prison systems providing condoms has risen from 53% in 1989 to more than 81%.

“People haven’t recognized what a huge public health issue this is, how it affects everyone. It’s a very porous situation. And people have to view the prisons as part of a community.”

– Margaret Winter, National Prison Project,
American Civil Liberties Union

Meanwhile, people with HIV who live in rural areas are imprisoned by distance, community ignorance, unprepared health providers (where there are any at all), and loneliness. For them, even more than other people with HIV, the disease is worsened by depression. Prejudice against them is growing in rural America. In one study of infected people living in the country, 38 percent indicated that they had considered taking their own lives in the previous week.  Discrimination affects everyone connected with the infected individual; one family had difficulty arranging a funeral for a son who had died of AIDS, because the church pastor refused to bury their child. And “for some reason, paraprofessionals, volunteers, and nonprofessional workers in rural communities appear not to feel bound by the rules of confidentiality.”

In rural areas, too, there are practically no public health HIV prevention efforts and no mandatory HIV education in the schools. Health providers simply do not recognize the symptoms.

“Tell the Truth, and Shame the Devil”

A recent study found that the proportion of adults who believed that a person infected with HIV through sex or drug use deserves to have AIDS had increased in the 1990s. Roughly one-fourth of the respondents felt uncomfortable having direct or even symbolic contact with a person with AIDS (PWA). Said the researchers, “Given that these respondents represent a large number of adults, it is understandable that many PWAs fear the consequences of stigma when their diagnosis becomes known to others. Such fears are likely to have detrimental effects on PWAs and persons at risk for HIV. They will also affect the success of programs and policies intended to prevent HIV transmission. Thus, eradicating AIDS stigma remains an important public health goal for effectively combating HIV.”

There’s a long way to go:

People with or even suspected of having HIV are turned away from health care services, denied housing and employment, shunned by friends and colleagues, turned down for insurance coverage, or refused entry into other countries. They may be evicted from home by their families, divorced by their spouses, and suffer physical violence. The stigma attached to HIV/AID may extend into the next generation, placing an emotional burden on children who may also be trying to cope with the death of their parents from AIDS.

International covenants require measures to promote public health and access to health care. Yet prevention and care are hindered wherever women do not have power to make choices in their lives, including refusal of unwanted sex; where people are persecuted because of their sexual orientation, or where children cannot realize their rights to education and information. Freedom from discrimination makes people with HIV less fearful of disclosing their status and organizing themselves in associations to contribute to the response.

The Committee on HIV/AIDS calls upon the Episcopal Church and each of its members:

§                                 To recognize that condemning people infected with HIV and AIDS is a breach of social justice.

§                                 To speak out against governmental policies that speak more to personal prejudices than to health care priorities.

§                                 To speak honestly, no matter how uncomfortable it is, about how HIV is transmitted and can be prevented.

§                                 To understand that the HIV/AID epidemic has become an index of existing social and economic injustices.

§                                 To incorporate education about HIV/AIDS into confirmation preparation, marital counseling, counseling for blessing of same sex unions, and in seminaries and nursing homes.

§                                 To find out who within their own churches, especially rural churches, is currently living with HIV and AIDS and offer them help and hope.

§                                 To heed the Gospel call to love and healing.

§                                 And finally, to realize that,

Courageous, resilient, and resourceful peoples on the margins, those who have been left out, or put out, do not need our money as much as our love; they do not need our imposed solutions to their problems, as much as our assistance to discover their own answers.

 

Footnotes

1. Dr. William L. Yarber, senior director, Rural Center for AIDS/STD prevention, Bloomington, Indiana.

2. Peter Piot, UNAIDS Executive Director, “Keeping the Promise,” Keynote Speech, XIV International AIDS Conference, July 7-12, 2002.

3. Major Herbert C. Rader, M.D., F.A.C.S., Medical Advisor, Salvation Army, “Those on the Margins,” AIDS and Religion in America Conference, November 10, 1998.

4. Nicholas K. Geranios, Native American Group Says Stigma Surrounding AIDS Prevents Many from Receiving Treatment, Associated Press, November 27, 2001.

5. David Satcher, M.D., U.S. Surgeon General, www.surgeongeneral.gov/aids/tlcapage1.html (May, 2001).

6. Ceci Connolly, “Report Says U.S. Minorities Get Lower-Quality Health Care: Moral Implications of Widespread Pattern Noted,” Washington Post, March 21, 2002; report issued by the Institute of Medicine.

7. “Lesson for AIDS Fighters: Syrine Swaps Work,” Newsday (New York), August 16, 2001.

8. Rader, see note 3.

9. Charles E. Clifton, The Young and the Restless, www.thebody.com, March/April 2001. Elinor Nauen, “AIDS: A Women’s Disease,” www.thebody.com.

10. Rebecca Solomon, social worker and case manager, AIDS Project Los Angeles, quoted by Nauen, note 10.

11. Anne De Groot, M.D., director, HIV Prison Project, Brown University, quoted in Stacey Singer, “Prisons are Breeding Ground for HIV, but Officials Ignore Problem,” Orlando Sentinel, August 13,2001.

12. “Fact Sheet Number 13: Mental Health Needs of HIV-Infected Rural Persons,” Rural Center for AIDS/STD Prevention, 2001.

13. G. Cajetan Luna, “Suburban and Rural Populations,” Encyclopedia of AIDS.

14. “Stigma and Discrimination, World AIDS Campaign 2002-2003,” .

15. Mark E. Wojcik, et al., “AIDS in National and International Law,” Proceedings of the American Society for International Law, 2003.

16. Rader, note 3.

 

 

 

 

 

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