FAQs

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.

  • 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.

 

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.

The Hotline is a resource for perinatal care providers working with pregnant people living with HIV and their newborns. It provides immediate medical and social service consultation and links patients and their newborns to care during pregnancy and the postpartum period. It is available to the entire state of Illinois - 24 hours a day, 7 days a week - and is funded by the Illinois Department of Public Health.

There have been many advances in the prevention of perinatal HIV transmission. Without any treatment, the risk of transmission is one in four, about 25% chance. Luckily, there are steps that can be taken to reduce the risk to less than 1%.

  • 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.

The Hotline primarily serves medical and social service providers. People who are pregnant and living with HIV are also encouraged to call for information and linkage to services.

Preventing HIV transmission to the baby takes a lot of steps. It is most important that you see your doctor regularly so that they can monitor your health and the pregnancy. Some of the main steps to prevent transmission are:

  • Prenatal care (attending all visits)
  • Specialty HIV care (all visits)
  • Anti-HIV drugs (during pregnancy, at a delivery and for the baby)
  • Formula feeding (Breastfeeding is strongly discouraged as this increases the chance of transmission)

A positive rapid HIV test is interpreted as a preliminary positive. Because no test can be both 100% sensitive (no false-negative results) and 100% specific (no false-positive results), a given test is typically designed to primarily possess one of these characteristics at the expense of the other. A rapid HIV test is a screening test meaning that it is a sensitive test but not specific. Practically, this translates to more false-positive test results. This is why all positive rapid HIV test results require confirmation with a subsequent supplemental HIV test different from the initial test. In certain situations, such as labor, it may be necessary to initiate treatment prior to obtaining a confirmatory result. Other times treatment can be delayed until a confirmatory test result is obtained. The Illinois Perinatal HIV Hotline is available to help you make these treatment decisions.

Rates of perinatal transmission of HIV can be reduced to less than 1% if pregnant people living with HIV are in care and receive optimal treatment. The Perinatal HIV Hotline is one component of the statewide safety net of services designed to identify pregnant people living with HIV and link them to care. The Hotline was developed to act as a lynchpin of the safety net offering medical consultation, activating enhanced case management to link patients to care, and providing support and follow-up for rapid HIV testing in labor and delivery units.

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