FAQs

What is the Illinois Perinatal HIV Prevention Act?

The Perinatal HIV Prevention Act (410 ILCS 335/) aims to eliminate perinatal HIV transmission and serves as the legal basis for rapid HIV testing in Illinois. It was first passed in August 2003 as Public Act 93-566 and was amended in 2006 and 2007. The law was most recently amended in August 2017 by Public Act 100-0265 and mandates the following:

  1. Standardized and mandated counseling of all pregnant people.
  2. Opt-out HIV testing as early in pregnancy as possible.
  3. Repeat opt-out HIV testing during the third trimester, ideally by the 36th week of pregnancy (August 2017 amendment).
  4. Opt-out rapid HIV testing be offered on labor and delivery to people without a documented HIV test from the third trimester of the current pregnancy (August 2017 amendment).
  5. Mandatory rapid HIV testing of newborns to determine HIV-exposure if there is no documentation of maternal HIV testing during the third trimester of pregnancy or at delivery (June 2006/August 2017 amendments).
  6. Reporting of all preliminary positive rapid HIV tests on birthing parents and infants within 12 hours, but no later than 24 hours, of the test result to the 24/7 Illinois Perinatal HIV Hotline at 1-800-439-4079 to ensure medical consultation and linkage to case management (June 2006/August 2017 amendments).
  7. Documentation of HIV test results in prenatal, labor and delivery, and newborn pediatric charts.
  8. Hospitals submit monthly aggregate statistics that include the number of people who present with known positive HIV status, the number of pregnant people rapidly tested for HIV in L&D, the number of newborn infants rapidly tested for HIV, the number of preliminarily positive pregnant people and preliminarily HIV-exposed newborn infants identified and other information determined necessary.
  9. Hospitals report cases of perinatal HIV exposure of newborns.

What is the benefit of the Illinois Perinatal HIV Prevention Act?

According to the CDC, without treatment there is a one in four chance that a pregnant person will pass HIV to their newborn. With treatment, that risk can be reduced to less than 1 in 50. The Illinois law ensures that pregnant people are strongly encouraged to accept HIV testing and offered treatment if they are diagnosed with HIV.

What else does the Perinatal HIV Prevention Act require?

The Illinois Department of Public Health (IDPH) must provide case management to pregnant people living with HIV and their newborns, maintain the 24-hour Illinois Perinatal HIV Hotline, and prepare an annual report on the implementation of the Act.

What are hospitals in Illinois required to report?

Providers must report, within 12 hours but no later than 24 hours of a test result, all pregnant people or newborns with preliminary positive rapid HIV test results to the 24-hour Illinois Perinatal HIV Hotline (800-439-4079). Hospitals must also report aggregate statistics monthly and inform parents of the importance of treatment to prevent HIV transmission to the newborn. Every healthcare facility caring for a newborn whose birth parent was diagnosed with HIV prior to labor and delivery must report a case of perinatal HIV exposure to the appropriate health department.

What is the law in Illinois regarding rapid HIV testing of newborns?

In Illinois, mandatory rapid HIV testing of newborns to determine exposure to HIV is required if there is no documentation of the birth parent's HIV test result from the third trimester of pregnancy or at delivery. This testing should be done as soon as medically possible and is mandated by law in the Perinatal HIV Prevention Act.

How soon should we call the Illinois Perinatal HIV Hotline to report a preliminary positive rapid HIV test?

Ideally, the call should be made to the Hotline as soon as possible. By Illinois law, the call must be placed within 12 hours but no later than 24 hours of the test result.

Who is required to offer HIV counseling and testing?

Every healthcare professional involved in providing prenatal care, labor and delivery services, or care for newborns—including licensed physicians, physician’s assistants, and registered nurses—must counsel pregnant people about HIV and, unless they decline, provide HIV testing. For delivering patients and newborns, that HIV test must be a rapid test.

What counseling and testing services must providers offer to pregnant people?

  • Prenatal care: Health care professionals must counsel all pregnant people about HIV and provide HIV testing as early in pregnancy as possible unless they decline or there is documentation that they were previously tested during the current pregnancy. Providers must explain that individuals may decline HIV testing, but that if they decline testing, HIV testing will be mandatory for the newborn.
  • Third trimester repeat HIV testing: As of January 1, 2018, healthcare professionals who provide healthcare services to pregnant people are required to give HIV counseling and provide repeat opt-out HIV testing during the third trimester, ideally by the 36th week of pregnancy. 
  • Labor and delivery:  As of January 1, 2018, any healthcare professional or hospital caring for a pregnant patient during labor or delivery is required to offer counseling and opt-out rapid HIV testing if that pregnant person does not have a documented third trimester HIV test. Testing is not required if the pregnant person has a documented negative HIV test from the third trimester of the current pregnancy or is already documented to be living with HIV. Providers must explain that patients may decline HIV testing, but that if they decline testing, HIV testing will be mandatory for their newborn.
  • After delivery: If there is no documentation of an HIV test on the birth parent from the third trimester or at delivery, then mandatory rapid HIV testing of the newborn, as soon as possible within medical standards to determine HIV exposure, is required. The birth parent's or guardian’s consent is not required to test the newborn.

 

What must HIV counseling include?

All HIV counseling for pregnant people must be in accordance with the AIDS Confidentiality Act and include:

  • The voluntary nature of testing for pregnant people.
  • The requirement that opt-out testing of the patient be performed, unless they decline, and how to decline.
  • The benefits of HIV testing for pregnant people, including the opportunity to prevent HIV transmission to the newborn.
  • The benefit of HIV testing for the infant, including interventions to prevent transmission, and the side effects of those interventions.
  • The confidentiality provisions that relate to HIV and AIDS.
  • The requirement that if the birth parent’s HIV status from the third trimester is unknown, the newborn must be tested for HIV.
  • An explanation of the test, including its purpose, limitation, and the meaning of its results.
  • An explanation of the procedures followed.
  • The availability of additional or confirmatory testing, if appropriate.
  • Counseling may be provided in writing, verbally, by video, electronic or other means. The patient must be offered an opportunity to ask questions about testing and to decline testing for themself.

How must the HIV test be administered?

  • All testing of pregnant people must be voluntary. Only newborns whose birth parent’s HIV status from the third trimester is unknown may be tested without consent.
  • Opt-out HIV testing must be conducted for all pregnant people. They must be provided with counseling prior to HIV testing. Providers must explain that individuals may decline HIV testing, advise that they will be tested for HIV unless they decline, and informed how to decline testing. They must be counseled on the benefits of HIV testing, and providers must inform patients that their newborn will be tested if they are not tested.
  • Any testing and test results must be documented in accordance with the AIDS Confidentiality Act (410 ILCS 305/). All counseling and acceptance or refusal of testing must be recorded in the birth parent's medical records.
  • The law requires that the birth parent’s HIV test results be recorded in the newborn’s chart. The provider must note if the test results are not available because the birth parent declined testing or was not tested.
  • Testing of patients in labor and newborns must be performed by a rapid HIV test.
  • Providers may be fined for violations of the AIDS Confidentiality Act, including failing to provide adequate pre-test counseling.

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