By Matt Simonette

Staff writer

A regressive Illinois notification law, the failure of abstinence-only sex education and rising infection rates were just a few topics addressed at a Nov. 9 forum on young people living with HIV/AIDS.

“HIV/AIDS: An Escalating Infection Risk—Solutions Beyond Abstinence and Condoms,” held at the Hotel Inter-Continental downtown, brought together policymakers and health officials, as well as young people living with HIV/AIDS, all of whom concluded that the state has a long way to go in order to address the crisis from the vantage point of the state’s youth.

The forum, sponsored by Humboldt Park-based Children’s Place Association, began with testimony from three youths infected with HIV.

John, 18, was infected by a former boyfriend, whom he had been with for 8 months. He said that he waited quite some time to get tested.

“I didn’t have a decent support system,” John said.

“I always need to find out myself exactly what something is,” he explained, so he did a lot of research about HIV on the Internet beforehand. When he finally got the test, he added, he resented the patronizing tones with which some of his physicians addressed him.

Brett, 20, took an HIV test thinking there was no chance that he could be positive. He thinks he was probably infected while he was still in high school. He said his family is supportive, but he still has a hard time addressing the disease’s stigma, “knowing that someone you tell will judge you.”

His sentiments were shared by Crystal, 15, who contracted the disease from her birth mother. She described the frustration of having to “suffer the consequences of other people’s mistakes,” adding, “They put a label on people—‘Caution: AIDS.’”

Every panelist at the forum agreed that, between under-funded care and research and shortsighted public policy, the community has come up short in helping young people like John, Brett and Crystal.

Pam Briggs, director of Heart of Illinois HIV/AIDS Center in Peoria, pointed to circumstances in that community—which has an abstinence-only health education program—that illustrate that young people are not getting adequate information. According to Briggs, Peoria County saw a 47-percent increase in HIV infections in 13-24-year-olds over 2005-2006.

State Rep. Sara Feigenholtz (D-Chicago) explained that state law probably deters young people from being tested.

The Communicable Disease Prevention Act stipulates that when a school-age person is reported to either state or local health departments, that person’s school principal must be notified. The principal in turn must notify the school superintendent. At their discretion, the superintendent may notify the school nurse, the student’s teachers and “those persons who…are required to decide the placement or educational program of the child.”

Officials may furthermore notify other persons as necessary for the student to remain enrolled, as long as the student’s identity is not revealed.

The law was initially sponsored by former state Rep. Penny Pullen (R-Park Ridge). Feigenholtz said, “I was shocked we have such an egregiously Neanderthal law on the books.”

Ann Hilton Fisher, executive director of AIDS Legal Council of Chicago, said schools are highly invested in having a “culture of sharing” that often turns into a culture of disclosure and gossip. She knew of one school where a school nurse instructed an HIV-positive girl to only use the nurse’s washroom when the girl was menstruating, and of another where a gym accident led to a coach’s outing of a positive student to his teammates.

“We’ve got to come in line. Kids with HIV don’t need special attention in school,” Fischer said.

She and Feigenholtz agreed that the law probably won’t be repealed easily, since some state lawmakers could fixate on the fact that parents do not have to be notified of a minors’ status. Margaret Bergling, president and CEO of the Child Care Association of Illinois, said that at the very least the law might be changed so that information about a student’s status might be shared more responsibly.

The law came to Feigenholtz’s attention when she was starting to have discussions about the Nov. 9 conference.

“It’s kind of shocking there was so little information about this out there,” she said after the conference.

She mentioned that she knew of a physician who would not adhere to the rule, adding, “One has to wonder if there’s a bunch of physicians or public health officials who don’t adhere. One wonders if we need to have some kind of intervention between providers trying to satisfy privacy and confidentiality concerns and state bureaucrats, many of whom also have M.D. behind their names.”