Treating HIV, AIDS and Stigma

Treating HIV, AIDS and Stigma
Accompanied by drummers, a young woman dances in the streets of Sathangudi. Paul Jeffrey

When Uma Maheswari’s husband died of AIDS, neither knew anything about the virus that caused the disease or how it was transmitted. After her husband died, Ms. Maheswari learned she was HIV-positive and thought it was a death sentence, a fear reinforced by the death of her 1-year-old daughter from AIDS. Rejected by people around her, Ms. Maheswari was despondent, even suicidal. Her in-laws said she could live with them only if she did all the washing and cleaning, and handed over her husband’s meager pension. She took her son, who is HIV-negative, and went to her own parents, but they demanded money in exchange for board. Ms. Maheswari felt lost, until someone told her about an organization that could help.

The Center for Research and Rehabilitation of Infants and Females (CRIF) assists women who collide with India’s gender-based discrimination and violence. Based in Madurai, a city in southern India’s state of Tamil Nadu, CRIF receives support from United Methodist Women’s Mission Giving to educate women and others about HIV and AIDS. CRIF intervened and got Ms. Maheswari’s family to help her.

CRIF staff also helped Ms. Maheswari understand the importance of good nutrition and a healthy lifestyle in combating HIV infection.

“I started a new life with CRIF,” said Ms. Maheswari, now a trained CRIF peer educator and working part time to educate other women about HIV and AIDS-related issues.

Around the world, HIV and AIDS continue to ravage lives and communities. Yet the stigma and discrimination that come in the wake of the disease are often more fatal than the syndrome itself. Faith communities, at one time the source of much of the negative response to people living with HIV and AIDS, are today learning to speak the language of love, providing care and treatment while also taking a leading role in demanding full acceptance of people infected or affected by the disease.

Southern India is one of those places where things have gotten better, but there’s still a long ways to go.

“A decade ago, people living with HIV were rejected by everyone, including their family,” said Maheswari Boopathy, CRIF’s executive director. “After years of education programs raising awareness about the virus, the situation has improved. But the stigma is still there.

“In a family, people often won’t touch the bed or the plates of a person who is HIV-positive. If there’s a family gathering, they tell them to go away and not come back until the function is over. When a married man dies of AIDS, his parents immediately ask the daughter-in-law to go away. They won’t give her any of her husband’s property.”

Getting past “bad people”

Among the prominent opponents of such discrimination is Kousalya Periasamy, president of the Positive Women’s Network in Tamil Nadu. She said her most risky behavior was having sex with her husband, who died of AIDS in 1995. “I didn’t know anything about HIV and how it was spread. I only knew that immoral people got it, so how did I get it?” she said.

This lingering notion that only “bad people” get infected with HIV has hindered action against the virus. “The Indian government gave the impression that HIV was mostly spread by sex workers. And since sex workers are generally seen as bad people, then anyone who was HIV-positive was seen the same way,” Ms. Boopathy said. “That perception has changed as more and more people have been infected, no matter how they got infected. Today most people understand that anyone can be HIV-positive.”

The Indian government’s response to the epidemic has improved because of pressure from rights groups and nongovernmental organizations, Ms. Boopathy said. The Indian government now provides antiretroviral drugs, which can allow an HIV-positive person to live a relatively normal life. Yet gaining access to medical care can be difficult, as some physicians refuse to treat HIV-positive patients because they are afraid that would scare away other patients.

CRIF uses a network of peer educators like Ms. Maheswari to take its message into the rural villages and urban slums where knowledge about the epidemic lags. Using street theater, the educators get the message across that AIDS is a disease, not a curse, and that it can be prevented.

“Because people usually hide their sexual relationships from others, it’s difficult to talk directly about sex,” Ms. Boopathy said. “But by using theater, we can get across to them how HIV is transmitted and prevented. It’s a polite and acceptable way to educate people, and they get entertained while they’re being educated.”

Such creative education efforts are having an impact in many places around the world. A study released in July from the Joint United Nations Program on HIV and AIDS (UNAIDS) showed HIV prevalence among young people had declined by more than 25 percent in 15 of the 21 countries most affected by AIDS. In eight countries, according to the report, the declines in HIV prevalence had resulted, at least in part, from positive changes in sexual behavior among young people, including youth waiting longer before they become sexually active and having fewer partners.

Money woes

That behavior change is working as an AIDS prevention strategy can have larger implications for women, said Silke Mallmann, a German psychologist and Catholic nun who works with trafficked women in eastern Europe.

“Behavior change is possible, but I’d like to see it happen on a deeper level, more than just as a response to HIV and AIDS,” said Sister Mallmann, who worked for several years with an AIDS program in South Africa. “If women could have greater say in matters related to their own sexuality and a greater say in how they create their relationships and get out of a vicious circle of poverty, dependency, abuse and disease, we can accomplish a lot.”

There is other good news from the front lines of the struggle against HIV and AIDS: antiretroviral treatment is saving the lives of millions. New trials of microbicidal gels appear to offer hope for greater protection of women. Male circumcision — which reduces the infection risk to men — is gaining popularity in some regions.

But AIDS activists say much of this progress is at risk because of money. A study this year by Ecumenical Advocacy Alliance showed a flatlining of funding for faith-based organizations working with HIV and AIDS — a serious problem since faith-based groups provide up to 70 percent of health care in some poor countries.

The Rev. Bob Vitillo, an AIDS expert for Caritas Internationalis, said this funding decline is already affecting the church’s work.

“I was in Uganda in June, and our care workers are being told that no new patients should be put on the rolls, and in some cases people are being dropped,” Mr. Vitillo said. “Some newly diagnosed families are being told that they have to choose which person will get treatment. Given the culture of Africa, what that means is that the family will divide up the medication to share it among several members, and so no one will get well.” 

UNAIDS reports only one-third of the estimated 15 million people who need treatment are receiving it. Over half of those currently on treatment receive it through services funded by the Global Fund to Fight AIDS, Tuberculosis and Malaria. Yet new pledges to the fund, announced in October, fell short of the lowest target set by the fund as essential to continue current treatment rates. Governments and private donors committed $11.7 billion over three years after the fund set a minimum target of $13 billion. The United Methodist Church, the first faith-based organization to partner with the fund, pledged up to $28 million for the fund’s work.

“We’re really at a tipping point in the struggle against HIV and AIDS,” said the Rev. Donald Messer, a United Methodist and executive director of the Colorado-based Center for the Church and Global AIDS. “Once the flavor of the month for funders, it seems to be going out of favor. We’re challenged today by AIDS funding fatigue. Some people are more interested in easier diseases to treat, less controversial ones like malaria. Some of the crisis is due to the global economic crisis, but it’s also clear that governments are not cutting back on military expenditures.”

Looking again at Jesus

While HIV and AIDS provide significant challenges to the world, they also offer an opportunity for people of faith to reconnect with their roots.

“AIDS is challenging the church to look once again at the life of Jesus, who was constantly on the margins of society, bringing people at the margins back to the center,” said Richard Bauer, a Catholic priest from the United States who runs an AIDS program in Namibia. “Many of the new HIV infections are found among the most marginalized people, so our response to the Gospel today isn’t to reach out to the tax collector and leper, but rather to the IV drug user in the Ukraine or the woman in commercial sex work who’s being trafficked. They are calling the church to no longer be comfortable only in parish settings. We’ve got to go to the margins as Jesus did.”

The Rev. Paul Jeffrey is a United Methodist missionary and senior correspondent for response

Posted or updated: 11/30/2010 11:00:00 PM
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