Researcher Works to End HIV Stigma in Ethiopia, India

UC Merced lecturer Carol Sipan became concerned with the social stigma of HIV in some developing countries after a 2009 trip to Burundi, where she and a colleague from Tanzania were training pastors and church leaders on what they and their congregations could do to reduce HIV and its impact in their community.

Her concern, along with her passion for both international work and HIV prevention research, drove her to seek solutions. Sipan, an assistant professional researcher in UC Merced’s Health Sciences Research Institute, is now partnering with church leaders in Ethiopia and India to provide communities with sustainable treatment options, family support and education about HIV.

“I saw things there that could create real barriers to people receiving the support that they need,” she said. “The stigma that they endure is just incredible.”

Throughout her visits to these communities, Sipan learned that women and children are particularly affected by this stigma, regardless of whether they have the virus. In many cases, men refrain from telling anyone that they have HIV, then die without warning from related diseases.

Their widows, then considered unlucky and unsuitable for marriage, are often unable to provide for their children and can be turned away by their own parents. Many of them are infected with HIV from their husbands and have no options for remarriage. Their children are left starving and too poor to attend school, and daughters of people with HIV are likely to never be accepted for marriage.

Men and women with HIV are often shunned in their communities, and those wanting to be treated can spend half a month’s pay for transportation to clinics in urban areas, with no guarantee that medications will be available there. Poor nutrition and a lack of education about the virus lead to related illnesses and an inability to work regularly.

Multiple Strategies to Subvert Stigma

So Sipan and the church leaders developed the idea of implementing mobile clinics, microclinics and nutritional programs as ways to subvert the stigma and get people the help they need.

Mobile clinics could provide primary care for all residents, Sipan said, creating safe places for HIV-positive people to receive crucial testing and treatment privately, without the community learning of the reason for their visits.

Microclinics can provide longer-term, sustainable environments for fostering healthy habits, support and education, she said. A microclinic consists of about three people in an immediate social network who are trained to manage disease and provide support for one another. They hold regular meetings to share successes and failures and meet monthly with other microclinics to share information. As community interest grows, healthy habits and education about disease become more widespread, and the likelihood of permanent, communitywide change increases.

“People really start looking at how they can come together and change their community,” Sipan said.

To achieve these goals, Sipan will work with Microclinics International, which will train her on leading microclinics so she can train church leaders in India and Ethiopia. She sees the churches as the best place to start, as they can bring communities together to more naturally begin the difficult conversation about HIV.

To address some of the health difficulties associated with poor nutrition and low income, she also hopes to involve organizations such as Heifer International, a project that supplies families with animals that can provide food and reliable incomes. In addition, she plans to identify private donors, foundations or grant-makers to provide financial support for the children who would otherwise be unable to attend school.

“We need to create both social and physical environments that support healthy behavior,” she said.