CAH Conference Update

July 27, 2022

In 2020 Lurie Children's Sex Development Program shared a statement regarding intersex care and committed to convening key stakeholders to discuss CAH surgical procedures on infants. To lead these efforts, we hired a neutral party, Dr. Lisa Campo-Engelstein, a bioethicist with a specialty in health humanities. Since 2020, Dr. Campo-Engelstein, along with Lurie Children's staff and faculty, including CAH and intersex patient advocates, have been planning a CAH conference in which all perspectives would be given an equal opportunity to be considered and heard. As part of this process, Dr. Campo-Engelstein and Lurie staff convened focus groups and met individually with impacted parties and communities, collecting stories and data to guide conference proceedings.

As a result of those activities, we have realized that the majority of stakeholders, for complex and diverse reasons, feel uncomfortable and unable to come together either in person or virtually to discuss the important question of surgical procedures with CAH-affected infants. It has become clear as part of this process that, unfortunately, we at Lurie Children’s are unable to create an environment where everyone, most importantly patients with CAH, feel supported enough to openly share honest opinions and experiences safely given the external environmental pressures. Although the planned conference will not be convened by Lurie Children's, our Sex Development Program and the hospital remain committed to defining best practices based upon the highest principles of medical ethics and public health.

We will continue to collaborate with the community advocates, patients, and
clinicians with whom we have actively engaged over the past 2 years. To that end, we will continue to work with all impacted parties to refine and finalize our own internal policy regarding CAH. The current moratorium on surgical procedures in intersex individuals will remain in place. As a reminder, our 2020 policy states that "in intersex individuals (recognizing those with CAH as potentially a separate patient population) irreversible genital procedures, particularly clitoroplasty, should not be performed until patients can participate.”

In alignment with our commitment to transparency, when a full policy regarding
CAH is better defined, we will share it publicly. Patient well-being and safety
continue to be our highest priorities. While we are profoundly disappointed that
we were unable to effectively convene the conference as intended, we remain
steadfast in our belief that such a meeting with all interested parties would be of seminal value and we renew our commitment to doing this important work as well as in supporting all patients and all individuals with intersex traits.