About AFC: First Person

Stepping Out for HIV/AIDS Policy in Springfield

by John Peller, Director of State Affairs

(5/12/06) Almost every day the state legislature is in session, I’m down in Springfield advocating for sound HIV/AIDS policy and adequate funding to address the epidemic. On a daily basis, I talk to dozens of legislators about a range of topics from pending legislation to community needs for HIV treatment and prevention services.

Unlike other advocates and lobbyists, my work often requires candid discussions about sex and drugs—primary modes of HIV transmission—and the populations most at risk, including men who have sex with other men, injection drug users, sex workers, and other vulnerable groups. While some lawmakers may blush at such discussions, talking about the realities of HIV/AIDS is almost always welcome, and serves as a refreshing break from the many mundane subjects debated in Springfield.

The AIDS Foundation of Chicago is one of only a few organizations with a regular presence in the statehouse. The greatest challenge I face as an advocate is getting legislators to focus on HIV/AIDS policy issues. Sure they all care, but they are constantly bombarded with multiple and complex issues and concerns. Most don’t have time to learn the intricate details of HIV/AIDS policy or fear voters will not understand if they take positions outside the political mainstream. Fortunately, we have dozens of legislators across the state who have embraced HIV/AIDS among their principal issues and work hard to educate and bring along their colleagues. And they are gaining results: this year, lawmakers approved a record $5.5 million in new funding for HIV/AIDS services and advanced other key legislation important to the HIV/AIDS community.

This legislative session pushed me to examine stalwart positions on such issues as confidentiality, mandatory testing, and other tenets of HIV/AIDS advocacy. Last fall, Illinois was forced to move to a name-based HIV reporting system or risk losing millions in federal funds for HIV/AIDS services. Will fear of name-based reporting reduce acceptance of voluntary HIV testing? Should the state intervene in HIV testing of newborns or empower pregnant women to make informed decisions in the best interest of their health and that of their children?

Fortunately, many experts on HIV/AIDS see the value of participating in the legislative process and took the time to educate me, my colleagues, and lawmakers about these and many other issues. Advocates such as Anne Statton, Dr. Pat Garcia, Ann Fisher, Michelle Wetzel, and others helped shed light on what is really at stake in arcane and complex testing and reporting legislation. People living with HIV provided critical reality checks throughout the process. Eva Janzen Powell’s testimony before the House Human Services Committee on living with HIV and raising an HIV-positive child helped humanize the subject matter at hand. And hundreds of others living with HIV drew on their life experiences to advocate for ADAP and other issues during the 2006 HIV/AIDS Lobby Days.

To the average legislator—who may not have a profound understanding or experience of AIDS stigma and discrimination—the positions taken by many AIDS advocates do not always make intuitive sense. It’s my job to help explain why we champion informed, written consent, seek laws to strengthen the confidentiality of the medical information, and promote expanded funding for HIV prevention and care services statewide. I must articulate the devastation that an HIV-diagnosis can bring to someone who is unprepared to learn it, and convey intricate policy issues like the new Medicare drug program, which added many new demands for medically vulnerable populations.

Now that the session is over, the whole process starts anew. In the months ahead, AFC and groups across the state will need to identify new ways to continue educating lawmakers about all the nuances of HIV/AIDS, and forge strategies to raise awareness among those who consider HIV/AIDS just another pedestrian issue. If we have learned anything from HIV/AIDS policy advocacy, it’s persistence. You can be sure I will be back in Springfield again, with my colleagues and friends, when the legislature is back in session.