Teachers, students benefit from AIDS activist’s commitment

All it took was a few encounters with AIDS patients for Marge Sutinen’s awareness to get raised through the roof.

“When I moved to Madison in 1986, AIDS was still a mystery disease, and information about it was very confusing: ‘AIDS is a gay disease.’ ‘Women not need be concerned.’ ‘Only certain at-risk groups can contract HIV.’ This confusion, plus the fact that so many people who already were infected were experiencing a tremendous amount of stigma and discrimination, led me to seek more factual information,” she says. “After seeking that information I decided to pursue issues of information and education professionally.”

These days, Sutinen directs the Midwest AIDS Training and Education Center in Wisconsin (MATEC-WI). Under contract with the UW Medical School, MATEC-WI coordinates educational opportunities for clinical health care providers who care for and treat people with HIV infection or AIDS. Between 1989 and 2001, Sutinen educated some 40,000 people statewide as the manager and instructor-trainer for the American Red Cross Badger Chapter. She also is an instructor-trainer in the UW–Madison Medical Genetics Program, where she challenges her students to think their way through the AIDS crisis. In addition, she develops curriculum and leads classroom instruction for the UW Teacher Enhancement Summer Institute.

All this had its genesis when Sutinen began volunteering at the Madison AIDS Support Network in 1987. She became the organization’s first director within months.

“In some cases I conducted a memorial service because a clergy member failed to show up — some outright refused to bury ‘those homosexuals,'” she says.

She also learned that the myths surrounding the disease had little, if any, basis in fact.

“The HIV infection is not a ‘gay disease.’ It only cares if its victim is human and doesn’t pay any attention to whether one is gay or straight, rich or poor, black or white, young or old,” she says.

Sutinen says that some of her most painful memories came from witnessing the rejection that the epidemic often prompts.

“Lovers would be excluded from carrying out the wishes of someone who was dying. There have been countless ‘blame game’ reactions when new infections occur. I took advantage of the fact that, as a straight white woman, I could challenge those behaviors and not have to fear someone burning my house down, as actually happened in some parts of the country in the late ’80s and early ’90s,” she says.

This semester, nearly 100 UW–Madison undergraduate students are in Sutinen’s Contemporary Issues in HIV/AIDS Prevention course, which she teaches with Tim Lapp of the Madison AIDS Support Network. The once-a-week class often hears from people who know the most about the disease: those who have been diagnosed HIV positive. In addition, students who have completed the basic-level class act as leaders to engage the other students fully in discussions about how AIDS affects politics and policy, research agendas at UW–Madison and elsewhere, and the impact of the epidemic on college campuses.

Sutinen says that eventual eradication of AIDS perhaps depends upon spreading accurate information. “It’s the only real weapon we have against this disease — this generation of students did not grow up with the extreme fear factor of HIV/AIDS,” she says. “Once the students become empowered with the facts, they can promote behavior changes. That says a lot about what can be done with knowledge and determination.”

Accordingly, Sutinen has broadened her educational efforts to include South Africa, a hotbed of AIDS cases. Since 1996, teachers from South Africa have enrolled in the Contemporary Issues class and other courses while they were attending the summer institute at UW–Madison. That led to an invitation for Sutinen to conduct training in South Africa through UW–Madison’s partnership with the University of Witwatersand and the University of Praetoria. “Several of the South African teachers are now the information leaders for their communities,” she says. Indeed, she’ll be leaving for Cape Town and Johannesburg in July.

And is all this effort making a measurable inroad against the spread of AIDS? In Sutinen’s mind there is no doubt.

“I know I’ve made a difference because a participant will tell me that she or he no longer has unprotected sex, or that she or he got HIV antibody tested or that she or he stopped sharing used needles,” she says. “I know I’ve made a difference when I hear that a medical provider is using the most effective AIDS treatment available after taking our training. I know I’ve made a difference when I witness teachers in developing countries adapting UW–Madison instructional materials in their classrooms.

“I know I’ve made a difference because of what I’ve learned from those who live and die with this disease. They have empowered me with knowledge that truly can stop the spread of this public health crisis,” she adds.

MATEC-WI offers monthly training at various locations across the state. For more information, contact Sutinen at ms2@ medicine.wisc.edu.