You may not be infected, but you surely are affected

by Danielle Abraham

After almost 25 years, the stigma still lingers. Can you catch it from a cough? Will you get it if you use the same bathroom? What if your hands touch? The answer to all of these questions is: "No, absolutely not!" But because of a lack of knowledge and a lack of desire to learn, people continue to believe these misconceptions about HIV/AIDS. Even as studies improve and scientists make new discoveries, HIV/AIDS continues to take its toll. Today there is not one county, out of 72 in the state of Wisconsin, that does not have a reported HIV case, and more than 3,000 people in Wisconsin have died from AIDS since the early 1980s. There are currently more than 8,000 people in Wisconsin infected with HIV or AIDS and hundreds of thousands are affected every day.

After more than two decades of coping with the disease, the face of HIV/AIDS is constantly changing. The disease does not single out any specific group of people, and every day more and more women and children are becoming infected. Even with the progress that has been made, people with HIV/AIDS still face discrimination. In Wisconsin, we do not see as much of the extreme prejudice toward people with the disease as we did in the mid-1980s, when you could be fired, thrown out of school or kicked out of your home if news of your health status got out. Although not as common, this still exists. The AIDS Network in Madison cannot even advertise on their front door because people are scared to be seen going into the “AIDS office.” The fact that the AIDS Network has to let some patients out the back door after testing because they are afraid of running into someone they know is a sign that we still have a long way to go.                                   

The American Foundation for AIDS Research (amfAR) says that 1 in 250 Americans is HIV-positive, but only 1 in 500 knows it. Public awareness campaigns are constantly struggling to encourage people to be more vocal about HIV/AIDS. Hundreds of people take part in AIDS walks and AIDS rides each year, but participants in these localized national events are mostly people who are infected or have a loved one who is infected. It is difficult to persuade people who are more removed from the disease to get involved in these events.

An HIV-positive activist in Milwaukee says the next step in activism is to motivate those infected to tell their stories and educate others about the disease. Another young AIDS activist now living in Washington, D.C., who has participated in seven AIDS rides in Wisconsin, said “These rides have changed my life and the way I think about AIDS. I believe these events are the best form of activism because it raises awareness and puts a face on the disease.” What should be obvious, yet isn’t, is that many with the disease are not sick and dying but actually living – and that HIV/AIDS affects everyone.

Longtime AIDS activist Bob Bowers has participated in countless AIDS walks since he tested HIV-positive in 1983. Recently, his friends encouraged him to move to Madison because it was a liberal city with access to an abundance of good treatment and services for those living with HIV. He currently speaks to people of all ages about what it has been like living with HIV for 21 years and expands upon these words at his Web site, www.onetoughpirate.com. Along with many others living with HIV, Bowers relies on a combination of more than 20 pills a day to keep him healthy. You would think after more than two decades of the disease we would be closer to a cure, but people are just living longer because of these drug cocktails.

Marge Sutinen, a longtime AIDS activist and educator UW-Madison Department of Medical Genetics, noted that young people are taking a stand. “This generation is not as stigmatized and is confident to walk in front of peers and offer a condom,” said Sutinen. She believes it is up to the young people to lead the way toward a solution. Marge’s AIDS activism began while volunteering to stuff envelopes at the AIDS Network in Madison in 1987. She is recognized throughout the state for her effectiveness in increasing community awareness, enhancing collaboration among those working in AIDS education and treatment, and expressing compassion toward people with HIV/AIDS. But most importantly, every year she educates many students at the UW about HIV/AIDS. Her determination and support has inspired students to bring AIDS activists to speak on campus, host dance marathons benefiting patients, educate students in local high schools about HIV/AIDS and participate in many other outreach programs.

A teaching assistant for Sutinen’s HIV/AIDS awareness and education course at UW-Madison reminds us of the huge stigma still surrounding AIDS in the United States. Through a discussion about the disease with students in her class, Lindsay Trust learned that although these students are well-educated about HIV/AIDS, some of their family members are not as knowledgeable about the disease. “As surprising as it sounds, many people they know still get nervous when they are aware that someone with HIV/AIDS is near them, especially when handling food or in a swimming pool. They forgot that people with HIV/AIDS are harmless and there is nothing to worry about,” Trust said.  College students today are fearlessly approaching the disease, becoming involved on many different levels. For the first twenty years of the disease, there was progressively more activism on college campuses, but today we are reaching an unprecedented peak, especially at UW-Madison.  

We must understand that activism is not only speaking out about something you are passionate about, but actually doing something about it. Bob Power, former executive director of the AIDS Network in Madison, said, “I want to make sure there is action behind my words.” Today, some people are definitely more aware and cautious in their sexual encounters, but at the same time others in the United States have recently become complacent about the disease. Sutinen reminds us some people think since science and research have led to so many new drugs to prolong life and slow the disease, HIV isn’t as bad as we thought. 

The next step in activism, experts agree, is to recreate the passion of the early activists in the mid-to-late-1980s. Education is the solution and we must encourage people to tell their stories to others. According to amfAR, there are a variety of ways to become an AIDS activist:

·  Volunteer with your local AIDS service organization.

·  Talk with the young people you know about HIV/AIDS.

·  Sponsor an HIV/AIDS education event or fund-raiser with your local school,    community group, or religious organization.

·  Urge government officials to provide adequate funding for AIDS research, prevention education, medical care, and support services.

·  Speak out against AIDS-related discrimination.

·  Support continued research to develop better treatments and a safe and effective AIDS vaccine by fundraising

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