More than 200 people from Jewish, Buddhist, Christian, Muslim and indigenous religions crowded in a conference room to hear a Round Table of representatives from the AIDS National Interfaith Network, International Christian AIDS Network,
1 Uganda, and Latin America discuss spiritual development as a complementary "treatment" for persons with HIV disease. During a lively period of discussion after the panel, participants shared a variety of stories, They told both of personal pain and of immense deepening of faith in their journey with HIV disease. Sadly the pain had often been inflicted by organized religion in the name of God. Persons challenged churches to respond positively and constructively to persons living with HIV/AIDS.
One HIV-positive participant from Zimbabwe stated that organized religion is "guilty of comfortable compassion." Other participants expressed concern at religious traditions and communities that would accept HIV positive persons when they become ill but not while they are well. Another problem is that many in the religious communities blame persons who have contracted HIV for their sickness.
Episcopal Bishop Kauma, Uganda, eloquently described his experience of working with persons living with HIV disease. He stated, "The church in Uganda has been brought closer to God through working with persons infected with HIV."
Self-identified HIV-positive clergy and laity agreed that the use of the term "victim" was a "dis-empowering" term to apply to them. All affirmed that HIV disease had "empowered" them to experience life and spirituality more fully.
The organizers of the Round Table had to lobby the planners of the IXth International Conference on HIV/AIDS extensively to have the issues of the religious community's response to the pandemic put on the agenda. The large attendance and lively discussion at the Religious Round Table demonstrated that spirituality is a significant part of living with HIV disease.
A small group of HIV-positive people have continued to live with the virus for more than a decade and have not been sick with even first symptoms of AIDS. Aldyn McKean should have died long ago, according to a physician he consulted in 1983. But Aldyn McKean is not sick. Not only that--his T-cell count has gone up again. He believes that one's personality, outlook on the disease and on life, personal relationships, and support network affect how long one lives with HIV. McKean observes, "Most long- term survivors I know have good, solid relationships in their lives."
2
Diane Haas, from Oakland, California, is another long-term survivor. She dates her infection with HIV back to 1979-82, when she "walked the streets, selling sex for drugs and money." She does not believe retroviral drugs helped her: "I took AZT for a couple of years. It made me incredibly sick and I never felt worse in my life." Haas said, "I believe that my passion for life has helped keep me alive. I have a great sense of humor and I like to have fun and to travel."3
The observations of these two people were confirmed by others at the conference. Experts described the remarkable group of mostly white males who have thrived with HIV for more than a decade.4
The World Health Organization (WHO) believes that about 14 million people in the world are HIV positive. About 2.5 million of the men, women, and children in this group have AIDS.
5 Dr. Michael Merson, head of WHO's Global Program on AIDS (GPA), warned, "The epidemic of HIV is well advanced, but the AIDS epidemic is just beginning."
6
Merson says that the pandemic is getting much worse in developing countries. The rates of infection are still increasing throughout Africa, Latin America, the Caribbean, the Middle East, and Asia. He is most alarmed about new statistics from Asia. In South and Southeast Asia, the number of infections has tripled in less than 18 months.7
It is cheaper to prevent AIDS than to deal later with its consequences. The World Bank calculates that, in the year 2010, the economy of Tanzania will be about a quarter less than it would have been without AIDS. Thailand projects that AIDS will cost it $9 billion by the year 2000.8
In some parts of the industrialized world, the rate of new HIV infections seems to have stabilized. Merson believes this change is a result of safer sexual behavior among homosexual and bisexual men. However he also reported that more heterosexual transmission of HIV is occurring in the industrial world. Also transmission is increasing in some urban areas in the United States and Europe because of intravenous drug use.9
Merson is concerned about central and eastern Europe. He warns that "economic crisis, unemployment, civil conflicts and social disruption" and increases in "prostitution and drug injection" are indicators that these areas are ripe for a serious problem, if they do not learn from the experiences of other countries that have been hard hit by the pandemic.10
Albania may have its first case of HIV. The incidence of HIV is rising in Czechoslovakia, Hungary, and Russia. The medical community is not prepared to deal with HIV and could be overrun by it, particularly in Russia.11
Some of the problems faced in Eastern Europe include a lack of supplies that hinders screening, treatment, and case monitoring and insufficient education and awareness about HIV. Enon Maci, Albanian cardiologist, observed, "People aren't in the habit of using condoms and at hospitals, instruments frequently aren't sterilized properly. We've got absolutely no experience in dealing with HIV."12
The situation in Russia is an example of difficulties in HIV prevention which are being faced. Teenage girls use anal sex as a primary means of birth control. The quality of condoms is not good. Hospitals and clinics have poor sterilization practices. Rubber gloves are almost unavailable.13
Often governments have been unresponsive. At the International Conference, several non-governmental organizations said they had written to their ministries of health. The response they received was "AIDS isn't the biggest problem, the absence of aspirin is."14
According to WHO, sub-Sahara Africa is the area of the world hardest hit by HIV. Most of the infections in Africa occur through heterosexual transmission. Women and children are those most at risk. Uganda is an example. The number of young women between the ages of 15 and 19 with AIDS is five times that of young men of the same age.15
AIDS increases the poverty level of families who have members with HIV disease, reducing the financial resources for home care. Most African PLWAs and their families prefer home care. As is so often the case around the world, women do most of the caregiving at home, even if they are sick themselves.16
Strategies need to be developed that will get the community's involvement. Such strategies and their resulting response need to be seen as complimentary to, not competing with, hospital care. The church in particular, is an untapped resource which could play a critical role in teaching, counseling, and providing physical and emotional support.17
In Thailand, the number of cases has risen substantially. A fungus infection called Penicillium marneffei has been diagnosed in 140 people with HIV and may become a major cause of disease for HIV-infected people in South West China, Indonesia, and Vietnam. Its symptoms are fever, weight loss, anemia, oral thrush, and skin lesions.
18
In Mexico, HIV transmission mostly occurs through heterosexual contact, although transmission through blood transfusion also is a significant problem. Officials estimate that half a million people are infected with HIV infections in Mexico. AIDS is the fourth leading cause of death in men between ages 25 and 34 years.
19
One of the problems facing Mexico is that the AIDS epidemic has moved into rural areas. The problem has been compounded by men who have been migrant workers in the United States, where they developed more risky sexual behaviors and quit using condoms as often. They continue the risky behaviors when they return to Mexico.20
Another problem is that most women cannot control the sexual behavior of their partners or make them wear condoms; therefore married women are more at risk. Prostitutes are another group of women at risk. While preliminary studies have indicated that prostitutes accept the female condom, poor women will probably not be able to afford it.21
Health officials have been challenging the Roman Catholic church, to which 90% of the population belongs, about its "benign neglect" in relation to prevention education and its proclaiming that AIDS is a curse from God. They were pleased that, at an ecumenical World AIDS Day gathering in 1992, the Bishop of Mexico City declared that AIDS is a medical condition, not a curse from God.22
The global response to the AIDS crisis is still inadequate and unrealistic. We are suffering from denial and complacency. We must take more positive steps to prevent new HIV infections now. If we do not, the cost in human life and potential will continue to escalate.
Experts project that the health care systems of both developed and developing countries will become economically overburdened. B. J. Stiles, president of the National Leadership Coalition on AIDS in the United States told participants in a symposium, "There will be no public policy changes until we in the HIV field demonstrate how HIV costs have an adverse impact on economic development."
23
S. Foster of London comments, "The same issue is being raised in Malawi, the United States, Thailand, Tanzania, and Canada: how will health services cope?" In Malawi, for example, AIDS is expected to consume 30% to 40% of the curative health budget by 2000. If this happens, that country's health care system could become overwhelmed.24
Although the risk of contracting AIDS in the workplace is very low, workers continue to worry they will catch HIV from their co-workers. In areas of the world where people with HIV are living and therefore working longer, employers face a number of AIDS-related tasks, such as dealing with changing health care options and new legal and regulatory requirements. Under the Americans with Disability Act, employees with HIV/AIDS may not be fired in the United States. Yet, a survey revealed that 32% of workers believed employers would fire an HIV-positive co-worker and 24% supported such termination of employment. Employers are in an ideal position to assume a leadership role in the fight against HIV/AIDS by implementing education programs for employees.
25
Participants at the conference heard this clear message, "The general idea is that after the first wave in homosexual men, the epidemic goes in all countries toward lower-income groups." Among lower-income persons, women are particularly vulnerable to HIV. An example of this pattern of the spread of HIV is an analysis of AIDS rates done according to postal zones in Newark, New Jersey. Rates of infection were strongly correlated with three variables that were all related to poverty: the percentage of families on Medicaid, families in multi-family units, and percentage of population that was African-American.
26
During the International Conference, the Women's AIDS Caucus met. They called on conference planners to focus more on issues important to women such as forced sterilization, coerced sex, STDs, HIV and contraceptive use, and perinatal transmission. Dr. Dorothy Blake, Deputy Director WHO/GPA, announced a "Strategic Plan for Women With AIDS" which is "designed to:
- reduce the incidence of HIV infection
- reduce the social and personal impact of HIV in women
- increase the emphasis on women's health as a priority development issue."27
GPA's strategies include reducing women's physical, social and economic vulnerabilities, and ensuring biological rights. All of these issues are made more difficult by women's role in society and what Blake calls the "'power differential.'"28 Men have more control over wealth, property and the work place. HIV Prevention: Intercourse during menstruation, the practice of douching, anal sex, the use of hormonal contraceptives, sex after menopause, defloration, female circumcision - all of these put women at a greater risk of contracting the HIV virus. Women are also made more susceptible by socioeconomic and cultural factors.29
Female-controlled methods of prevention need greater attention. Researchers are trying to develop an easy-to-use microbicidal compound which would inactivate bacterial and viral agents. The hope is that it will be odorless, tasteless, colorless, non-inflammatory, active for the duration of sexual intercourse, and not affected by temperature changes. The compound should be inexpensive and available without a prescription. In addition, the ideal microbicide would not interrupt the vaginal flora and could be used to prevent infection before and after intercourse.30
There are those who believe new technology diverts attention away from the true underlying problem -- that women lack power. Often women have no control over protection. Since condoms are worn by men the decision is left up to them. Concern was expressed that not enough attention is being directed to the needs of women by national organizations. Women need both a change in women's role in society and a practical method of prevention that women can control.31
Some societies have been reluctant to educate the young about AIDS. They fear that providing information might lead young people to experiment with sex or become more sexually active. The evidence is quite the opposite. Well-designed school education about safer sex leads to more responsible sex, a delay in first intercourse, and fewer teenage pregnancies.
32
This perspective is one shared by Dr. Anke Ehrhardt, of the HIV Center For Clinical and Behavioral Studies, Psychiatric Institute in New York. She emphasized the need for sex education, since most teenagers are sexually active. She said that, along with such education, effective messages can and have been given to children about the health advantages of delaying first intercourse. Her recommendations were: 1) Sex education must be age and gender specific; 2) Sex education must treat the topic of women's rights, including that boys and girls must share equal responsibility for sexual decisions; and 3) Sex education must be tolerant of different lifestyles, including homosexuality.33
WHO projects that 10 million children will be infected with HIV by the year 2000, another 10 million will be orphans of HIV-positive parents. Mother-to-child transmission will be the main way children will be infected. Most of the children, both those infected and those orphaned, will be from developing countries.
Dr. Catherine Peckham, Department of Pediatric Epidemiology at the Institute of Child Health in London, reported that, "The risk of transmission through breast feeding is about 30% if maternal infection is acquired postnatally. The additional risk from a mother with established infection is around 15%." She stressed that advice on breast feeding must take into account local circumstances, since failure to breast feed in some areas might result in higher infant mortality because they would not receive protective antibodies that are in breast milk.34
Another risk factor is premature delivery. Children born to HIV-positive mothers before 34 weeks are three times more likely to have HIV antibodies than children born weeks later.
A large number of AIDS HIV negative orphans already exist--2 million in. In Uganda, there are 1.5 million orphans out of a population of 16.5 million. The good news is that people in many communities are joining together to plant food and raise animals to feed the orphans.35
Many children are faced with having AIDS themselves or knowing one or more family members who have HIV. "Children need help to cope with the stigma and prejudice surrounding the diagnosis as well as issues related to loss, death, and dying," said Dr. Ruth Sims of Mildway Mission Hospital in London. Children of sick parents must be treated in an environment that fits children's needs. Many children "have become part of a conspiracy of silence surrounding the diagnosis of their family member, sworn to secrecy and unable to cope with the feelings of fear, guilt and shame."
36
Dr. James Oleske of the Newark Children's Hospital has worked with infected children for 12 years. He stated, "while we wait for a cure, no act of kindness, no matter how small, is ever wasted."37
Despite earlier criticisms from Wellcome, the manufacturer of AZT, the investigators of the Anglo-French Concorde trial made it clear in a briefing held during the conference that they stood by the design and analysis of their study. The trial conducted by the group "provides no evidence of a significant benefit when AZT is taken by asymptomatic HIV- positive people, either in terms of survival or of progression to AIDS." The study revealed that, while AZT boosted CD4 cell counts in the treatment group, this biological effect did not translate into "clinical benefit."
38
Dr. Robert Gallo, chief of the NCI Laboratory of Tumor Cell Biology, reported that "while following the presently established strategy of treating
HIV infection with single drugs, scientists are increasingly facing the problem of growing viral resistance ...
necessitating the use of three or more compounds directed against the same target, so that 'the virus is forced to mutate itself to death.'"
39
Long-term survival for all HIV-infected people is possible, Dr. Jay Levy reported. The most important clues come from studying people that have had the virus for a long time without developing AIDS or even signs of infection.
40
Scientists are studying the virus infecting a woman who has been HIV-positive since a blood transfusion 12 year ago but has stayed healthy. They hope they may find clues to creating an effective vaccine. Maybe they will even be able to identify which genes of the HIV virus are responsible for its pathogenic effects. (See also "Living With HIV" earlier in this summary.)
41
Walter Dowdle of the Centers for Disease Control said, "we must take care that the public understands that, despite a vaccine, AIDS will not go away." The ultimate goal must be to develop a vaccine for use in adolescents, and it must therefore be very safe.
42
1 ICAN was formed as a new organization during the IXth International Conference.
2 Ute Bsing, "Living with AIDS," Conference News (June 9, 1993), p. 4. Hereafter abbreviated CN.
3 Richard Woodman, "The Will-To-Live Factor," CN (June 9, 1993), p. 8.
4 Bsing, "Living with AIDS," p. 4.
5 Projections and statistics are accurate as of June 1993. 6. "Fighting The Epidemic" (an interview with Dr. Michael Merson, head of WHO's Global Program on AIDS), CN (June 9, 1993), p. 2.
7 Ibid.
8 Ibid.
9 Ibid.
10 Ibid.
11 Taryn Toro, "Eastern Europe Caught Off Guard," CN (June 11, 1993), p. 1.
12 Ibid.
13 Ibid.
14 Ibid.
15 "Community Care in the Developing Countries," CN (June 8, 1993), p. 6.
16 Ibid.
17 Ibid.
18 Annette Tufts, "New Opportunistic Infection in Asia?" CN (June 11, 1993), p. 4.
19 William A. Check, "Miles Away from a Solution," CN (June 11, 1993), p. 8.
20 Ibid.
21 Ibid.
22 Ibid.
23 William A. Check, "Economics with a Useful Focus" CN (June 9, 1993), p. 1.
24 Ibid.
25 Ute Bsing, "AIDS in the Work Place" CN (June 10, 1993), p. 5.
26 William A. Check, "Women and Poor Bear the Brunt," CN (June 10, 1993), p. 7.
27 "Women's Caucus Introduces New Draft Plan," CN (June 8, 1993), p. 4.
28 Ibid.
29 Lori Tobias, "Women at Risk," CN (June 9, 1993), p. 5.
30 Lori Tobias, "Female Prevention Session Praised," CN (June 10, 1993), p. 8.
31 Lori Tobias, "Women at Risk," CN (June 9, 1993), p. 5.
32 "Fighting the Epidemic" (an interview with Dr. Michael Merson, head of WHO's Global Program on AIDS), CN (June 9, 1993), p. 2.
33 Richard Woodman, "Sex Education Must Start Early," CN (June 9, 1993), p. 3.
34 Richard Woodman, "Ten Million HIV Babies by 2000," CN (June 10, 1993), p. 3.
35 Lori Tobias, "Lost Generation," CN (June 11, 1993), p. 4. 36. Ute Bsing, "Hospice and Palliative Care," CN (June 10, 1993), p. 7.
37 Ibid.
38 "Concorde Group Rebuts Criticism," CN (June 8, 1993), pp. 1, 5.
39 Michael Sims, "Beyond the Horizon" CN (June 9, 1993), p. 1.
40 Michael Sims, "Harmless Strains Might Break the Dam," CN (June 10, 1993), p. 4.
41 Sharon Kingman, "Long-Term Survivor a Key to Vaccine?," CN (June 9, 1993), p. 7.
42 Sharon Kingman, "Vaccine Coming but No Panacea" CN (June 10, 1993), p. 1.
The preceding information has been adapted from the conference daily newspaper, "Conference News: AIDS Berlin 1993" and from notes on meetings attended by Rev. Charles Carnahan, Executive for HIV/AIDS Ministries, Health and Welfare Ministries Program Department, General Board of Global Ministries, 475 Riverside Drive, Room 330, New York, New York, 10115.
Family HIV/AIDS Network: A Network of United Methodist Families and Others Who Have Been Touched by HIV/AIDS
When I was serving in a local church a few years ago, I had the opportunity and privilege of being in ministry to a family whose son was dying of AIDS. Shortly before James* died, George his father told me James had AIDS (for six months prior to that time, no one in family had used the term). That pain-filled revelation preceded a request, made in almost tentative tone, for me to do James' funeral. It was as if George was unsure I would do his son's funeral because he had AIDS.
For months following James' death, George and Jill, his wife, would attend church almost every Sunday. Each Sunday they did, I would observe Jill crying through most of the service. The image that sticks in my mind most is that of George and Jill sitting in church in great pain at the death of their beloved son next to another couple whose son died of cancer at about the same age some years earlier. That couple felt safe to share with their friends and church family what their son died of, unlike George and Jill.
George and Jill are represented in virtually every congregation within the United Methodist. They represent countless hundreds of thousands of individuals who can not share, even within their local congregations the pain of loving someone infected with HIV/AIDS. Loved ones who can not name their pain or feelings with those in their church. As a result, they are unable to fully and completely grieve their loss.
If you are someone who loves another person infected with HIV, we hope you will find some peace and comfort within these pages. If you are part of a church where HIV/AIDS is not openly discussed and an environment of "safety" is not evidenced, we hope you will be moved to lead your church to become such a place.
While a definition of the family may be open for debate, William Sheek, in The Word on Families: A Biblical Guide to Family Well-Being (Nashville: Abingdon Press 1985) provides a definition which will guide the contents of this section in the months to come. His definition is:
We, sisters and brothers in the family of God, accept equally as families tho se who are related by marriage or remarriage, blood or adoption; those who covenant to live together as family; and those single persons and persons living alone who choose to be family with others outside their kinship family.
Rev. Charles Carnahan
Executive for HIV/AIDS Ministries
*Names used are not real names.
by Bill Nunn
What happens after the first stunning, mind-numbing news that your child is dying? We had accepted the fact that his life had not been the greatest. He was independent and wanted to live his own way and that was all right. We were there
when and if he needed us. His lifestyle was such that we somewhat expected that he could get AIDS. We accepted his lifestyle, but felt a sadness that he could not settle down with one person. In the back of our minds, we had that unsettling anxiety that one day his life would fall apart.
In August, 1989, it all became real. He collapsed where he was working as a home health aide. He managed to get home and collapsed again. For two days, he lay on the floor of his apartment until someone found him and called an ambulance.
At the hospital, his condition was diagnosed as AIDS. He spent three weeks there gaining a bit of strength, being counseled on the disease, and realizing that
his working days were over. He went home in a very weak condition but was still
able to care for himself. He had medication for AIDS and for pain.
He called us for the first time after his diagnosis when he was unable to walk. We were not prepared for what we found. He was a virtual skeleton in a wheelchair. Unable to get up and down the stairs of his apartment, he had to depend on
others for his needs.
By June, he was bedridden, no longer able to hold up his head or sit up. In the middle of the month, his home health aide went on vacation. Since there was no replacement, he went to the hospital. He never returned home.
As my son wasted away, a part of me went with him. No parent can look at this process and not die a little bit with the child. I keep saying "child," but he was 35-years-old.
On August 1, 1990, he died suddenly. The funeral was well- attended. The pastor who conducted it was the one who had counseled him in regard to his faith. She brought great comfort to us as she related that she believed he was in God's grace and safely home with God.
His close friends were in shock, not having accepted his death or that he had AIDS. Denial was as obvious as grief. I feel for these young people who have so
much life ahead of them and who are taking so much risk in their encounters. We can only hope that his death can make them aware of how fragile life can be.
When a child dies, a part of the parent dies too, no matter how old the child
may be. A part is ripped out that cannot be replaced. An empty space exists as
long as the mind remains. If the death might have been prevented, the feeling of
loss is even worse.
There is still no cure for AIDS. Along with grief comes a rage at the delay of development of a cure, as well as anger at the insensitivity that can be shown
in the care of persons with HIV.
We have been very fortunate in having compassionate friends who expressed the ir sorrow. No one backed away, just the opposite. We live in a caring community.
I have not been shy in letting people know about my son's death from AIDS. I hope others who have someone with HIV in their families will allow us to support them so that they do not have to suffer alone.
