Gov. JB Pritzker signs executive order in effort to create equity in sickle cell disease treatment

Monday, March 18, 2024
Pritzker signs executive order to improve sickle cell treatment access
What is sickle cell disease? The blood disorder affects about 100,000 people in the U.S., and Illinois Gov. JB Pritzker is trying to address it.

CHICAGO (WLS) -- Illinois Gov. JB Pritzker came to LaRabida Hospital, which has one of the largest sickle cell programs in the state, to sign an executive order promoting equity in sickle cell treatment.

Under the watchful eyes of 7-year-old Kioko Jenkins, diagnosed at birth with sickle cell disease, Pritzker signed the order to improve access to treatments for sickle cell.

"Historically, we've seen breakthrough treatments out of reach for everyday Americans because of their cost," Pritzker said.

On Monday morning, Gov. JB Pritzker was expected to sign an executive order promoting sickle cell treatment.

That cost can be more than $1 million. But Monday's announcement tasks the Illinois Department of Healthcare and Family Services with leading the effort to establish payment models and financial structures that support access to new sickle cell disease treatments within the state's Medicaid program.

It also creates an Advisory Council on Financing and Access to Sickle Cell Disease Treatment.

"Today, we're taking the steps to remove financial barriers that stop Illinoisans from enjoying the progress out scientific community has worked so hard to deliver," said Illinois Lt. Gov. Julianna Stratton.

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The announcement is life-changing for Ronisha Edwards-Elliott, who has lived her whole life with sickle cell disease and has pushed for better access to affordable health care.

"It causes us to think about whether we can afford the livelihood we deserve with our sickle cell disease or take care of everyday expenses such as rent and housing and food equity and all of those things," Edwards-Elliott said.

Sickle cell disease is an inherited genetic blood disorder that primarily affects Black people.

TaLana Hughes, executive director of the Sickle Cell Disease Association of Illinois, said the announcement is a big step in supporting patients who may not have gotten the care they should have.

"For years, it's always been said that sickle cell disease primarily affects African-Americans. So it seems to stop there," Hughes said.

It was also announced that the state would enable participation in gene therapy to pave the way for better treatment for sickle cell.