| April 27, 1998, remarks by Rickey Sain Sr. The Illinois Department of Public Health hearing on the issue of Names Reporting of People Testing Positive for HIV State of Illinois Building (160 N. LaSalle, Chicago) Thank you for your time here today on an important public health concern. I am Rickey Sain Sr. I have worked in HIV education and prevention for 15 years, primarily as a social worker at community based agencies, on behalf of populations at risk. Today I am employed as a prevention case manager at Horizons Community Services, a 25-year-old Chicago social services agency, serving people who are lesbian, gay, bisexual, transgender, or who are questioning their sexual identity. Horizons here publicly expresses its opposition to name reporting. More immediately, however, I am testifying today as the chair of the Oak Park Board of Health Committee on AIDS. Since 1983, this urban-fringe municipality has served thousands of west-area people living with HIV disease--through education, prevention, testing, and counselling. The Village of Oak Park believes that collecting more complete and accurate data about the extent of the HIV epidemic in Illinois is needed. At the same time, we disagree that name reporting is the best way to achieve this goal. A better alternative is possible. Name reporting clearly deters individuals from seeking HIV testing. Name reporting discourages and delays healthy HIV-positive people from receiving timely treatment. As proposed, name reporting works against the stated goals of the Oak Park Department of Public Health, goals intent on reasonably addressing the public health concerns of HIV disease. It is everywhere evident, as well, that we still have far to go before HIV disease is viewed in the same non-judgmental and non-discriminatory context as other serious diseases. We still face many challenges in working compassionately at all levels to deliver a decisive knockout punch, free of bias and stereotyping, a knockout punch that will eradicate HIV disease eventually--once and for all. Yet it is possible now to work cooperatively to deliver a better and more reasonable alternative to name reporting. We believe that any alternative must protect an individual's identity while being able to track the disease by means of that scientific integrity which is demanded by any effective tracking system. A municipal health department, such as Oak Park, has a clear ethical and legislative mandate to provide a safe environment for people using its services. But by requiring health and medical practitioners to report the names of HIV patients to the state, the Illinois Department of Public Health unfortunately would encourage an environment in which the patient-doctor relationship of trust is eroded. In addition, many of the people who use public health clinics are medically and socially marginalized. As a result, they understandably have an even greater mistrust of the public health system. Name reporting creates barriers for people seeking help. Name reporting makes this mistrust worse, and people's fears greater. In all instances, however, name reporting unreasonably affects the quality and reliability of the data reported to the state by public health departments and clinics. The ineffective tracking system in place today will be replaced by yet another equally ineffective tracking system tomorrow. We must work together as partners to find a better and more effective alternative. Along with other public and private entities here today--the Village of Oak Park and Horizons Community Services being two examples--we urge the Illinois Department of Public Health to withdraw its proposal. We urge, rather, that a state-wide working group be designated and convened to develop fair and workable mechanisms for collecting HIV-related data. We would urge that this working group create a genuine partnership with health departments, private agencies, other care-giving organizations, and the community to adopt an effective and reasonable alternative to name reporting. By working together cooperatively, a partnership of professionals, consumers, and other citizens can help deliver a decisive knockout punch in eliminating HIV disease by developing a means of tracking the disease effectively. ***************** Addendum Many of the concerns and issues here today were addressed eloquently some six months ago in yet another setting during the October observance of AIDS Awareness Month. Back then and now today at this public hearing, it is clear that HIV disease challenges the entire community to a continuing role in the delivery of that knockout punch. That's "punch"--P.U.N.C.H. As an important reminder of those challenges, I here repeat today what was said back then. "P." Promoting ongoing dialogue. Promoting educational and prevention messages like those communicated by a partnership of consumers and professionals. "U." Understanding how we can fight the disease at all levels. Understanding better ways that we can advocate for, and support, improved services--their availability, their accessibility, their acceptability. "N." Noting AIDS as a major public health responsibility and challenge. Noting the differing yet similar ways the community responds uniquely to HIV disease. "C." Celebrating a sense of hope in the future. Celebrating the shared hope that increased dialogue and knowledge shall overcome the darkness of lives lost and shall be transformed into the light of lives saved. "H." Heeding the call for greater sensitivity to persons with HIV disease. Heeding the call to work in partnership, to keep on keeping on. Heeding the call to fight a devastating disease by eventually delivering--once and for all-- a medically decisive blow, a final knockout punch, as our nation did with polio more than 50 years ago. That's P. U. N. C. H.--promoting, understanding, noting, celebrating, heeding. These were some of the recommended actions six months ago during AIDS Awareness Month, and are now again recommended here today at this special public hearing. The hope at all times is that these actions will ignite greater awareness and acceptance of HIV disease in the future. Thank you for your time and attention. We have come so far, but we still have so far to go. Back |