Rep. Ford Agrees to New Compromise Language for House Bill 980

Landmark HIV Testing Bill Preserves Informed Consent, Pre-Test Counseling

SPRINGFIELD, IL — State Representative LaShawn K. Ford (D-Chicago), sponsor of House Bill 980, has agreed to new legislative language developed by the Illinois Department of Public Health (IPDH) and several other groups, including the AIDS Foundation of Chicago, for his HIV testing bill. While crafted to expand voluntary HIV testing, the earlier version of HB 980 would have effectively eliminated pre-test counseling and informed consent for HIV testing.

“With leadership from Rep. Ford, IDPH, and other important stakeholders, Illinois will advance a new paradigm for HIV testing that not only streamlines testing but also ensures testing remains informed, ethical, and grounded in the bedrock tenets of patients’ rights,” said AFC Executive Director Mark Ishaug.

Ann Hilton Fisher, executive director of the AIDS Legal Council of Chicago (ALCC), a participant in the discussions that led to the new proposal, said: “No one should be tested for HIV without their understanding and consent. This compromise ensures that patients, not their doctors, will continue to make their own decisions about HIV testing.”

Under Ford’s direction, IDPH officials spearheaded negotiations to craft a new compromise proposal between IDPH, AFC, ALCC, the Illinois State Medical Society, the American Civil Liberties Union (ACLU) Illinois Chapter, the Illinois Hospital Association, and the Chicago Department of Public Health. After several rounds of intense discussion, the group finalized and submitted to Rep. Ford its agreed proposal on Friday, May 4. Rep. Ford is expected to introduce it as an amendment to replace the current version of House Bill 980 this week.

The Compromise

The compromise preserves important patient protections — including testing only with informed consent and critical pre-test information as well as the right to refuse testing — while fulfilling the U.S. Centers for Disease Control and Prevention’s call for streamlined, routine HIV testing. Highlights of the proposal include:

• Specific language on the merits of routine HIV testing and CDC recommendations: The proposal adds to Illinois’ AIDS Confidentiality Act's preamble that the public health will be served by "making HIV testing a routine part of general medical care as recommended by CDC."
• Pre-test information: Consistent with CDC recommendations and current Illinois law, the proposal requires healthcare providers to deliver brief pre-test information to patients about HIV and the meaning of test results. Information may be supplied in writing, verbally, by video, or other means. Patients must have the opportunity to ask questions.
• HIV testing may be done only with the knowledge and informed consent of the person being tested. Consistent with CDC recommendations and current Illinois law, the proposal preserves the requirement that patients give their informed consent before they receive HIV testing.
• A patient’s verbal consent is sufficient to order an HIV test: Departing from current law, the proposal would follow CDC recommendations in establishing that patients may give their informed consent to testing in writing or verbally. In either case, the consent must be documented by the healthcare provider.
• A separate HIV testing consent form is not required: Consistent with CDC recommendations, doctors may ask patients to sign consent forms that include both general medical care and HIV testing, although doctors who wish to continue to use separate forms which incorporate pre-test information and written consent are free to do so.
• Opt-out testing allowed: Consistent with CDC recommendations, the proposal allows doctors to perform opt-out HIV testing. Doctors must tell patients in writing or verbally that they will be tested for HIV unless they refuse. Doctors must tell patients how to refuse testing and may not force patients to receive HIV testing.
• HIV-positive results delivered in person: Consistent with CDC recommendations, but not previously required by Illinois law, doctors must tell patients in person about positive test results.
• Counseling and healthcare referrals required for newly diagnosed patients: Consistent with CDC recommendations, but not previously required by Illinois law, doctors must refer individuals who test HIV-positive to counseling and medical services to ensure they receive the follow-up assistance they need to safeguard their health and improve their lives.
• Penalties for violating the AIDS Confidentiality Act: The proposal doubles the minimum financial damages individuals may collect for violations of the AIDS Confidentiality Act, including testing without informed consent. A reckless or intentional violation of the patient protections of the Act will now carry a minimum civil damages award of $10,000.
• Focus on implementation: The proposal requires IDPH to lead important statewide implementation activities, including clinician training, technical assistance, and development of standards for the delivery of HIV test results.

A long-time proponent of written informed consent policies, AFC has nonetheless endorsed the proposal because it retains the option for written informed consent, preserves the provision of valuable pre-test information, and ensures testing remains non-coercive and voluntary with referrals to follow-up care and services for those who test HIV-positive.

In addition, AIDS advocates succeeded in negotiating increased financial damages for violations of the AIDS Confidentiality Act and provisions to support statewide training and technical assistance for clinicians, which will be instrumental in persuading healthcare providers statewide to offer HIV testing more readily as a part of routine medical care.

“We are proud of the hard work and commitment of everyone involved in this difficult and, at times, contentious process,” said David Ernesto Munar, AFC associate director. “Above all, we are grateful that everyone who worked on this proposal is committed to helping Illinoisans unaware of their HIV-status receive the education, testing, and services they need to improve their lives.”

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