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October 2012 Issue

HIV's Unexpected Legacies

A July 22, 2012, rally and march in Washington, D.C., for global relief programs for those living with HIV and AIDS.
A July 22, 2012, rally and march in Washington, D.C., for global relief programs for those living with HIV and AIDS.

By Paul Jeffrey

Activists fighting the AIDS epidemic for 30 years share lessons about social justice, gender equality, human rights and solidarity.

As Gracia Violeta Ross arrived in Washington, D.C., for the XIX International AIDS Conference in July, she read the news headlines about the U.S. government’s approval of Truvada, a drug that inhibits HIV infection, and the claims of some scientists to be close to developing a cure for the deadly disease. She closely followed the tale of a Seattle man — known widely as the “Berlin patient” — who was reportedly cured of HIV infection by a bone marrow transplant. Yet like many of the almost 24,000 people who came to the conference, Ms. Ross, a founder of the Bolivian Network of People Living with HIV, was skeptical that eventually coming up with a pill to kill HIV will solve all the problems the wily virus has caused.

“There is too much emphasis here on biomedicine, and we risk losing sight of essential lessons we’ve learned in fighting the epidemic for 30 years, lessons about social justice, gender equality, the struggle against violence against women and girls, human rights, and the right of all to access to health care,” said Ms. Ross, who is also an HIV ambassador for Tearfund, a British evangelical aid group. “Even with a cure, if it comes someday, we’ll still suffer from these social vulnerabilities. If it’s not HIV, it will be something else that takes advantage of these factors to cause suffering.”

In Myanmar, an Asian nation waking up to democracy, an HIV expert says the disease has taught important political lessons that shouldn’t be overlooked.

“AIDS is one place where people come together from different strata, backgrounds and beliefs and work together in a very democratic process,” said Soe Naing, a social mobilization advisor for UNAIDS, the joint United Nations program. “We listen to key affected populations, we listen to people living with HIV, and we hear their voices and try to build up their capacity and empowerment.

“This is unusual compared to other development sectors in a country like Myanmar. AIDS is definitely a bad disease, but we can learn a lot of lessons from our experience with it, of bringing people together and building consensus. It has encouraged empathy and understanding. Even if HIV goes away tomorrow, that solidarity will remain.”

A Catholic priest from the United States who has run a massive HIV education and treatment program in Namibia says the virus will leave behind a painful legacy, no matter the progress on a cure. “Even if we got a vaccine tomorrow and a cure on Monday, we have two generations of children who have not been parented. They’re now becoming parents, and they’ve never been parented,” the Rev. Rick Bauer said.

“In the high-impact countries that had all the deaths in the late 1990s and early 2000s, nobody is talking about the social and developmental ramifications of not being parented. Even if they announce a vaccine and a cure, we still have a lot of work to do.”

Reducing mother-to-child HIV transmission

Still, these and other faith-based participants in the international conference agree that great progress has been made. Because antiretroviral medications have dramatically lowered the viral load in infected persons, an HIV diagnosis is no longer a death sentence. HIV-positive women taking antiretroviral drugs can give birth to children with minimal risk that the child will be infected. That only works, however, if women of childbearing age are identified, tested and treated.

That’s precisely the goal of a global plan initiated by UNAIDS last year, with cooperation from faith-based and other groups in India and 21 countries in sub-Saharan Africa where 95 percent of the mother-to-child transmissions take place. The program aims to reduce such transmission to zero by 2015.

Mr. Bauer says it has already worked in Namibia.

“With over 2,500 Catholic AIDS volunteers scattered around, every time one of them saw a pregnant woman on the street they would grab her and say, ‘Do you know where the clinic is?’” he said. “It has become a joke of sorts that if you’re pregnant you have to watch out for the AIDS volunteers — but that enthusiasm has made Namibia a success story in combating AIDS.”

Convincing men that HIV isn’t just “women’s business” is critical. Men need to be tested and treated as well. In some programs, when a woman comes alone to her first clinic visit, she is encouraged to write a “love letter” to her husband, inviting him to come along on the next visit. In others, a woman who brings her husband with her is given a priority place in the waiting line.

Pacem Mnyenyembe, an HIV-positive activist in Malawi, said reducing mother-to-child transmissions is the only way to control the infection and reduce the number of HIV-positive people. “To save a mother means to save a child. And to save a child means to save the whole family because mothers are the backbone of African society,” she said.

Ms. Mnyenyembe has two children. One, a daughter, is also HIV positive. She says “all hope was lost” in her life until she and her daughter started receiving antiretroviral treatment together from a church-sponsored program. It’s the church, she says, that has accompanied her as she struggled with the disease.

“Faith leaders in our communities are doing a good job in an environment where stigma and discrimination are very high. They are the people who are healing our broken wounds. Without them, AIDS would be an even more difficult thing,” Ms. Mnyenyembe said. “When someone is HIV positive all you can think about is that you’re forgotten. You think even God has forgotten you. You ask, ‘Why me?’ But these people bring us hope when we’re desperate. When we think that the world is ending, they are there with good news for us. They break through the isolation produced by stigma and discrimination and give us hope.”

The Church and HIV

It’s a common experience for HIV-positive women to get blamed by religious leaders for their disease. And not just among Christians.
Faghmeda Miller was the first Muslim woman in South Africa to publicly disclose her HIV-positive status. “They told me that HIV doesn’t exist within Islam, and I therefore must be a loose woman to have contracted it,” she said.

When Ms. Miller convinced the leaders of her mosque that her only high-risk sexual activity had been with her own husband, they eventually supported her. Worried that many others are not experiencing such support, she founded a support group for Muslims living with HIV.

Maria Ziwenge is a young Christian woman in Zimbabwe whose parents both died of AIDS. Ms. Ziwenge was born HIV positive, but didn’t deal with her status until a neighbor involved with the YWCA invited her to a support group. She was tested, started treatment, and eventually became a peer educator, providing faith-inspired support for other young people, especially young women.

“There are still pockets of resistance within the faith communities,” said Ms. Ziwenge, who got married and in 2011 gave birth to an HIV-negative baby boy. “People are still not open to conversation about sexuality, and they make moral judgments that exclude young women at their most vulnerable point. They need to embrace these young women, whose story is not that much different from mine. 

“I was lucky to have a supportive faith community that provided me with information on HIV. My prayer is that faith communities will have the courage to open up this crucial conversation with young women, and to accompany young women to get correct and accurate information, to access services, and most importantly to be there for them at the point they’re most vulnerable.”

Ms. Ziwenge said many church people still see HIV as something only affecting “other people.” The church, she believes, needs to see that “they” are now “us.”

“It’s not ‘their issue’ any longer,” she said. “Our demand is ‘Nothing for us without us.’ Let us include young women in our programs. Young women are both the most affected and the key to an AIDS-free generation.”

Free trade threatens ?treatment

Some 8 million people worldwide received antiretroviral treatment for HIV in 2011, a 20 percent increase over the previous year. That expansion of treatment has been helped by generic versions of several patented medicines, many produced in India at less than $100 per patient per year for some first-line treatments. How long that will last — and whether the other 8 million who don’t currently have access to the drugs can gain access to treatment — is in doubt, as free trade agreements often preclude or severely restrict generic licensing of patented medicines. Most international AIDS groups purchase antiretroviral drugs from generic manufacturers in India, except for programs funded by the U.S. President’s Emergency Plan for AIDS Relief, which buys name-brand drugs.

At the International AIDS Conference, Ms. Ross warned that U.S. trade policies were endangering advances in the fight against AIDS.
“If the U.S. signs a free trade agreement with India that includes medications, we are done,” she said in a meeting with U.S. government officials. “The whole developing world would be left to die because of the price of drugs.”

The U.N. has tried to resolve this problem by creating the Medicines Patent Pool, where pharmaceutical companies will deposit some HIV-related patents. These drugs can then be manufactured generically. The drug companies will still make a profit, just not as big. So far, only one company — California-based Gilead — has agreed to participate. Others, including Johnson & Johnson, have refused to negotiate, and faith groups around the world are turning the screws on them with both public demonstrations and behind the scenes lobbying.

Activists also accuse the pharmaceutical industry of playing games with patents.

“They’re patenting things that are simply not patentable, like combination medicines. But free trade agreements allow this,” said Ms. Ross.

“And when one lucrative patent is running out, the pharmaceutical companies will apply to patent the same molecule, but they’ll take a chloride from the left and put it on the right, and claim this is innovation. The intellectual property people don’t understand this, and they give them a new patent. Patents are designed to protect innovation, but this isn’t innovation, it’s deceit. Presenting a medication in pediatric dosage isn’t innovation, either. There are too many patents granted today for drugs which really don’t represent innovation.”

HIV in the United States

The conference in Washington, D.C., was the first time the biennial international gathering has come to the United States in more than two decades, a change made possible by the Obama administration’s removal of a prohibition on granting visas to people who are HIV positive. When Secretary of State Hillary Clinton spoke to the conference’s opening session, she said, “Let me say five words we have not been able to say for too long: ‘Welcome to the United States.’”

Because HIV has a preferential option for the poor, the locus of infection in the United States has migrated from urban and northern communities into rural areas and the south.

“In the south we have 31 percent of the U.S. population, but 50 percent of new HIV infections,” said Dr. Irene Miranda, executive director of the Southeast Conference of Catholic AIDS Ministers. “Of the 10 states with the highest number of people living with HIV, eight of them are in the south.”

This geographic shift presents new challenges.

“Our advocacy isn’t as developed in the rural areas because in southern culture it’s not considered polite to be in someone’s face demanding things,” Ms. Miranda said. “We Catholics aren’t a majority in the south, so we’re looked at with suspicion anyway, even before we talk about HIV. In the Bible Belt, there’s a very strong emphasis on sin, the sin of being gay, the sin of having HIV, and you’ll find churches there that still believe that AIDS is God’s revenge.”

The epidemic is also fueled by the nation’s economic woes.

“People living in poverty are much more at risk of contracting HIV, and if you have HIV you’re much more likely to be living in poverty,” said Ms. Miranda, noting that the biggest cause of home foreclosures is debt accumulated from unpaid medical bills.

According to the U.S. Centers for Disease Control and Prevention, one-fifth of the 1.2 million HIV-positive people in the country don’t know they’re infected. This means the epidemic isn’t going away any time soon, particularly in certain demographic groups where race and class combine to discourage early testing, treatment and care.

“With early treatment, some people consider HIV to be a chronic disease like diabetes. But in the Latino population, the average time from diagnosis to death is one year. That’s scandalous,” Ms. Miranda said. “Fifty percent of new infections are in black America. Seventy percent of youth who become infected are black. And 71 percent of women diagnosed with HIV today are black.”

Holding the conference in Washington, D.C., with its large African American population and relatively high HIV rate, provided some faith-based AIDS activists an opportunity to speak frankly about the stubborn resilience of the disease in certain U.S. communities.

“The HIV epidemic is teaching us about the commonality between African Americans and Africans,” said Pernessa Seele, founder of the Balm in Gilead, a faith-based group that received Mission Giving support in the 1990s.“Today the rate of HIV among black women in Raleigh-Durham, N.C., is higher than the rate of HIV in the Democratic Republic of the Congo.”

“We work in both Tanzania and here in the United States, and the HIV infection rate is higher among African Americans than in Tanzania,” Ms. Seele said. “We’re finding commonalities among black women, among men who have sex with men and amid youth. We have a lot in common with Africa, most especially about the role of faith. For black people around the world, faith is central to how they address everything in their lives, including HIV and AIDS.”

The Rev. Paul Jeffrey is a United Methodist missionary and senior correspondent for response. He blogs at kairosphotos.com.

Last Updated: 03/18/2014
 
 

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