Illinois' Public Health chief to face parents of terminally ill kids at state hearing

Oct. 25--Six parents are scheduled to testify at a legislative hearing Wednesday about Illinois' failure to test their children for a disease that is deadly unless caught and treated immediately.

You can watch live here.

The department, headed since January 2015 by Dr. Nirav Shah, has yet to begin screening Illinois newborns for Krabbe disease even though a state law mandating the testing was approved 10 years ago. Shah is also to appear at the Springfield hearing.

A co-sponsor of the 2007 law, Rep. Mary Flowers, D-Chicago, called the hearing in response to "Doomed by Delay," a Tribune special report that exposed how bureaucratic blunders have postponed Krabbe screening.

In addition to questions from legislators, Shah will face several parents whose children have died or are dying of Krabbe, a rare genetic condition that causes babies' nerves and brain stems to deteriorate in painful ways.

If the disease is identified through routine newborn screening, doctors can intervene with a transplant of stem cells derived from donated umbilical cord blood. Transplants performed before infants' symptoms appear can extend lives and reduce suffering. Once the nerve damage starts, it's too late to intervene.

Natasha Spencer, whose son Kenan Spencer Witczak was born after the screening was supposed to start, warned Shah in a September 2015 letter that children were dying because his department had failed to implement the 2007 law. She implored him to act with urgency to make the screening happen.

Shah, a physician and attorney, did not. His department acknowledges it is now on "Plan D" and said it anticipates launching the screening for Krabbe before the end of this year.

The Tribune identified five children whose Krabbe diagnoses could have been caught had the law been implemented. Three of those children have died, and the other two -- including Kenan -- are dying. Members of all five families are to speak at the hearing, with Spencer scheduled first. A father whose son's 2001 death from Krabbe spurred the family to support the 2007 law also plans to testify.

The hearing at the state Capitol can be viewed here after it begins around 2 p.m.

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