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Advancing the Conversation: AIDS Action 2007

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MADISON – “We’re here. This exists. It’s a medical condition, not a crime. There is treatment. There is a lot to be done.”

 

Heidi Nass, an outreach specialist and patient advocate for UW Health’s Human Immunodeficiency Virus (HIV) Care Program at University of Wisconsin Hospital and Clinics, has spent much of her professional life promoting that message on behalf of HIV and AIDS patients.

 

For the next couple of weeks, she’s reinforcing the message by helping organize a series of HIV and AIDS awareness and action events in Madison leading up to World AIDS Day December 1.

“The whole idea is to have a conversation in as many corners as we can get to,” says Nass, who has a law degree from the University of Wisconsin and whose activism on behalf of HIV and AIDS patients’ rights began long before joining UW Health. “We’ve started doing more work in the community to try to provide a place for other positive people.”

A Problem Local and Global

The furor surrounding HIV and AIDS has quieted since the early 1980s, when the first reports of the diseases blasted into the public consciousness, but HIV and AIDS are still rightfully referred to as epidemics. According to the Centers for Disease Control, 40,000 people in the United States are newly infected with HIV each year. Since 1981, roughly 1.7 million HIV cases have been reported in the U.S., leading to 550,000 deaths.

And Nass warns against the notion that HIV/AIDS is a problem that’s “somewhere else, affecting somebody else.” In 2006, 408 new HIV infections were reported in Wisconsin, bringing the total number of cases reported to 9,523 since 1983. Sixty-one percent of those cases occurred in Milwaukee and Dane counties.

“More and more, Madison does follow the national trends in terms of who is getting infected,” Nass says.

In the last 10 years, though, significant advances in prevention and treatment have transformed HIV into a disease that patients live with rather than one from which they quickly die. Medication plans are more efficient and easier to adhere to, and information about how HIV is transmitted has evolved from scientifically groundless superstition to scientifically supported fact.

Obstacles Still Remain

Despite notable progress, HIV/AIDS patients still face formidable challenges. Nass, HIV-positive herself, says many are shaken to the core of their being when confronted by the diagnosis.

“For me, it was like someone dropped a bomb. You look at what was the landscape of your life and it’s just bare,” she says. “If you’re diagnosed and you get treatment, there’s a good chance you’ll live a long life. But in your heart you still feel like you’re going to die. A lot of people I meet are grieving.”

To help alleviate the shock of diagnosis, Nass often employs a blend of optimism and realism in her work at the hospital.

“I go in as a peer,” she says. “When they say, ‘This kind of sucks,’ I can say, ‘Yeah, it does and I’m sorry.’ (But) I also tell them, ‘You’re never going back there. That person you were is gone.’”

Many adjust to being HIV-positive and have accepted that their survival depends on a daily adherence to a strict medication regimen and frequent check-ups at the clinic. But they still have to brace themselves against what Nass calls “this incredible, profound stigma.” The perception that people stricken with the disease somehow deserve it because they did something wrong or acted immorally still exists in far too great a proportion.

“You’re now one of them, one of those people they’re talking about,” Nass says. “There are a lot of assumptions about HIV – how you get it, what it says about your lifestyle.”

Events

Nass sees the four Madison-based activities to which she is contributing, informally titled “AIDS Action 2007,” as an opportunity to substitute compassion and understanding for misapprehension and spite.

“Action is the part of the equation that is necessary and is in some ways missing,” she says. “Nothing can happen without action. (HIV and AIDS) operate at the intersection of all of the ‘isms’ – racism, sexism, homophobia, poverty. You can’t do this work without touching those things every day.”

AIDS Action 2007 events include:

  • Express, an exhibit of the works of local artists meant to convey the social, political and personal aspects of HIV/AIDS. The exhibit is currently on display at EVP East Coffee Shop and Roastery at 1250 E. Washington Ave. in Madison and will move to the Common Wealth Gallery in the historic Madison Enterprise Center at 100 S. Baldwin St. from Nov. 26-29.
  • Prevent, a Nov. 27 exploration of the potential efficacy of microbicides (compounds that can be applied internally to protect against sexually transmitted infections) in the prevention of HIV. Located at the Health Sciences Learning Center, 750 Highland Ave., Prevent features a walk-through exhibit as well as a short film during which young women speak about the need for further microbicide research and support.
  • Advocate, a forum discussing how HIV/AIDS policy is made, the important role of a community voice in the process and opportunities for involvement. Advocate takes place at the Health Sciences Learning Center Nov. 28 from 9am to noon and features Jessica Terlikowski, the policy coordinator for the AIDS Foundation of Chicago.
  • Faith, a conversation with local faith leaders about their role in the fight against HIV/AIDS ignorance, intolerance and isolation, at Olbrich Gardens from 2-4 p.m. December 1.

“It’s a wide-open, quickly moving field where the edges change rapidly,” Nass says. “If you’re living with it and trying to make the best decisions you can, it’s really hard. So what are the issues related to HIV? How do you create a message? How do you approach your legislators about it?”

These are the questions Nass and her colleagues hope to address.

For more information about AIDS Action 2007, go to http://madisonworldaidsweek.googlepages.com. The AIDS Network Web site has a variety of information about HIV prevention, life care services local events and avenues for legal support people with HIV and AIDS.

 


Date Published: 12/28/2007

News tag(s):  hiv

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