The Case for Strengthening Confidentiality Protections for Youth in Illinois

Members of the Ci3 policy team are currently involved in policy discussions and a workgroup to support confidentiality protections for young people seeking sexual and reproductive health care services in Illinois. Research has shown that young people’s concerns about receiving confidential care regarding sexual and reproductive health services can play an important role in their willingness to seek care.

In particular, these concerns can lead them to delay or forgo care, affect their choice of provider, and impact their willingness to candidly disclose sensitive information. Studies have also shown that delays and foregone care associated with the loss of confidentiality may result in higher rates of teen pregnancy and sexually-transmitted infections (STIs). A recent report from the Centers for Disease Control and Prevention (CDC) found that 12.7% of sexually experienced youths would not seek sexual and reproductive health care because of concerns that their parents might find out. Particularly concerned were persons aged 15–17 years (22.6%). Results also indicated that confidentiality-related issues were associated with less reported use of some STD services, especially for younger persons and females.

Given the importance of confidential care for minors (youth under age 18) seeking sexual and reproductive health services, numerous leading professional medical organizations, including the Society for Adolescent Medicine, the American Academy of Pediatrics, the American Congress of Obstetricians and Gynecologists, the American Academy of Family Physicians, and the American Public Health Association, support confidential care for adolescent patients, while also encouraging family communication and compliance with relevant laws.

In Illinois, young people are able to consent to a range of health services on their own without parental consent, including for birth control and STI testing and treatment. In addition, Medicaid, a state-federal partnership program that provides health insurance coverage for low-income individuals, has rules that also require confidential family planning services be made available to minors with public insurance.

One potential threat to a young person’s health care confidentiality is the possibility that an “explanation of benefits” (EOB) will be sent to their parents. An EOB is a statement sent by a health insurance company or Medicaid Managed Care Entity (MCE) to their members explaining the medical treatments and/or services that were paid for on their behalf. Such a document could include information that a young patient may have wished to keep confidential. Historically, it is not the typical practice for MCEs (third-party organizations providing insurance coverage for Medicaid-enrolled individuals) to send home EOBs. However, there has been a significant increase in the number and role of MCEs in Illinois and thus a greater need for clarity. Health care advocates sought assurance that the privacy of individuals seeking sensitive health services—including young people seeking sexual and reproductive health services—would continue to be protected going forward.

As a result, two bills have been signed into law (House Bill 2812 and Senate Bill 2331) to preserve the privacy of those with Medicaid who are seeking sensitive services, including reproductive health services,  STI and STD services, substance abuse services, mental health services, and domestic abuse and sexual assault services. The law says that within the Medicaid managed care system in Illinois, an EOB describing any “sensitive services” cannot be shared through paper or electronic sources, unless specifically requested by the Medicaid recipient who received the “sensitive service(s).”

While this law establishes general requirements, true implementation calls for more specific guidance to MCEs. Members of our Ci3 team are now contributing to a workgroup that includes health advocates, providers, and clinical administrators to help outline implementation recommendations for the Illinois Department of Healthcare and Family Services regarding this law. Our aim is to ensure that the law accomplishes its original intent when put into practice and makes it easier for young people to feel confident seeking the sexual and reproductive health care they need.

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