Illinois is the only state that requires principals be notified of students’ HIV-positive status, but legislation working its way through the Illinois General Assembly may change that. Here, we take a closer look at the disclosure law and the bill looking to undo it.
Illinois is the only state that requires principals be notified of students’ HIV-positive status, but legislation working its way through the Illinois General Assembly may change that.
Sponsored by State Rep. LaShawn Ford (D-Chicago), HB 61, would repeal a 1987 law that requires a local health department to notify a student's principal if the pupil is diagnosed as having HIV or AIDS.
The bill narrowly passed out of the Illinois House of Representatives, by a 61 to 55 vote, earlier this month and, after receiving three co-sponsors in the Senate, is currently awaiting committee assignment in that chamber.
“There is no need for a principal or superintendent to know that one of their students has HIV,” Ford said in a statement.
The Illinois HIV Principal Notification law states that “whenever a child of school age is reported to the Illinois Department of Public Health or a local health department as having [AIDS or HIV] ... such department shall give prompt and confidential notice of the identity of the child to the principal of the school in which the child is enrolled.”
“The principal may, as necessary, disclose the identity of an infected child to: 1) The school nurse at that school; 2) The classroom teachers in whose classes the child is enrolled ... In addition, the principal may inform such other persons as may be necessary that an infected child is enrolled at that school, so long as the child’s identity is not revealed.”
But universal precautions are more than sufficient to prevent HIV transmission, according to Ramon Gardenhire, director of government relations for the AIDS Foundation of Chicago.
Since 1994, Illinois law has required school personnel to take routine universal precautions to prevent the spread of any blood-borne diseases. Essentially, staff members assume everyone carries an infectious disease and are required to always wear gloves and take other precautionary measures in medical situations, such as proper disposal of needles.
“There’s no medical reason any longer for this law, we know much more about the modes of transmission since it was enacted in 1987,” said Gardenhire, who testified on behalf of the bill before the House Health and Human Services Committee.
Gardenhire noted there's nothing in the legislation that stops a parent or student from contacting the district on their own volition to notify administration of an HIV-positive status.
“We know the possibility of transmission of HIV through biting or scratching is miniscule, and actually the CDC (Center for Disease Control and Prevention) has never reported a case of transmission that way,” he said. “HIV is mostly transmitted through sexual activity which doesn’t usually occur in a school setting.”
The Illinois State Board of Education (ISBE) supports the repeal of schools’ HIV/AIDS notification requirement.
“We are for the support of students' medical privacy, we believe that’s important,” said Mary Fergus, spokeswoman for ISBE. “We support that legislation.”
The Illinois Principals Association, which has formerly stated opposition to the legislation, is not taking a formal position at this time. But Alison Maley, director of government relations and public relations, noted that “with the use of universal precautions in terms of medical emergencies, (HIV status) information is not necessarily needed at the school level.”
“There may still be some individuals who are concerned about that information, though,” she said, referring to HIV status.
There were more than 12,518 reported people living with HIV in Cook County at the end of November 2012, and 16,428 statewide, according to the Illinois Department of Public Health. As of November of last year, there were 14,485 residents of Cook County living with AIDS, and 18,932 in Illinois as a whole.
Between 2003 and 2009, the number of 13 to 19 year-olds diagnosed with HIV increased 50 percent, with the figure rising 20 percent for persons ages 20 to 29.
From January 1, 2005 to November 30, 2012, Illinois saw 883 reported HIV diagnoses for youth aged 19 and younger, but only three AIDS-related deaths in that age bracket.
Nationwide, there were 49,273 diagnoses of HIV infection in 2011, according to the Center for Disease Control and Prevention. With 2,142 diagnoses, Illinois ranked sixth in the nation when it comes to HIV infection. The five states with the highest numbte of diagnoses were Georgia, New York, Texas, Florida and California; with the Sunshine State seeing 5,973 new infections that year.
The Chicago Board of Health has also stated its support for the bill, with officials writing a letter to the Illinois General Assembly urging lawmakers to vote yes on repealing the Illinois HIV Principal Notification law.
“Voting to preserve this law would be a vote in support of extreme government intrusion into a deeply personal and private health issue without adequate justification,” the letter reads.
The AIDS Legal Council of Chicago (ALCC) has suggested the law may potentially be an infringement on discrimination prevention clauses in the Americans with Disabilities Act.
It could also be a violation of the Illinois AIDS Confidentiality Act, which states "no person may disclose or be compelled to disclose the identity of any person upon whom (an HIV) test is performed, or the results of such a test in a manner which permits identification of the subject of the test."
“We know with certainty, 25 years after the law was enacted, there has not been a case of transmission in a school setting,” said Colleen Boraca, supervisory attorney with the ALCC, who also testified on behalf of the legislation in Springfield.
She said the ALCC’s concern is with the privacy of the student and their family.
“We have seen situations with families whose lives have been turned upside-down,” Boraca explained. “It’s bad enough that your child tests positive for HIV, but then to have the school principal find out, who by law can tell the student’s teacher and school nurse, that impacts a lot of people very personally, especially if you’re in a small town.”
Linda Coon, executive director of the Families’ & Children’s AIDS Network, said repealing the state law could increase the number of students willing to get tested. She said there is a high likelihood a student would refuse testing if he or she knows the results of their test would be disclosed to school staff.
“It is urgent that this law get repealed,” said Coon. “Not only does it deter people from getting tested, but it can have very negative effects on students.”
She told one “devastating” story of an Illinois kindergarten student who was told by a school aid during recess that she was HIV-positive. She was in the custody of her grandparents, who felt she was too young to know about her status, but somehow it filtered from the principal to the playground aid.
She said she had also heard of students dropping out after school administration gets notified of their status.
“We’ve worked with HIV infected families with kids for many years, and most of the kids that are HIV-positive have had bad experiences when they’ve had their identities shared with the school system,” she said.
State Rep. Ford agrees with Coon regarding the need to repeal the Illinois HIV Principal Notification law, especially considering the impact it could have on students getting tested.
“We need to do more HIV tests, not fewer, and this change in the law will help to protect the privacy of students, help us to do more HIV tests, and prevent the spread of HIV,” Ford said.