Colorado House passes sickle cell disease outreach legislation

Bill would appropriate $200,000 to establish program

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by Mary Chapman |

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The Colorado House of Representatives has passed legislation that seeks to improve health outcomes for state residents who live with sickle cell disease (SCD) through a new community outreach program.

If made into law, the measure (SB24-042) would appropriate $200,000 to establish the Arie P. Taylor Sickle Cell Disease Outreach Program — named for Colorado’s first Black female lawmaker — in the Colorado Department of Public Health and Environment (CDPHE). The legislation, passed 61-3, is sponsored by Assistant Majority Leader Rep. Jennifer Bacon (D) and Rep. Regina English (D).

“Long-standing inequities in our health care system have left many Black Coloradans without access to the care they need, let alone specialized care,” Bacon said in a press release from the Colorado House Democrats. “Our bill would establish the Arie P. Taylor Sickle Cell Disease Outreach Program to connect Coloradans living with sickle cell disease with health care resources and support.”

The legislation calls for the CDPHE to contract by Jan. 1, 2025, with at least one nonprofit community organization with experience providing support and services to sickle cell patients and their families. The program would run until July 1, 2030, and the organization would be required to submit a report before then describing the program’s impact.

To identify needed services, the department may consult with the Colorado Sickle Cell Treatment and Research Center at the University of Colorado’s School of Medicine. The center, established in 1978, facilitates coordinated statewide clinical care, research, and education activities. Since its inception more than 40 years ago, the center has worked to provide comprehensive care to the state’s estimated 450 SCD patients, most of whom live in the Denver metropolitan area, Colorado Springs, and Fort Collins.

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Program could provide counseling, advocacy

The outreach program could offer counseling and health guidance, as well as assist sickle cell patients and their families with identifying and accessing community services, outreach activities and specific programs, peer support, screening, and other care referrals, according to the sponsors. The program could also act as a platform for SCD advocacy, serving the interests of the sickle cell community, they said.

In the U.S., the blood disorder occurs in about 1 of every 365 Black births and 1 of every 16,300 Hispanic-American births. According to the center’s latest state action plan, Colorado is home to more than 250,000 African Americans and about 1.3 million Hispanics and has a rapidly growing community of more than 45,000 African immigrants.

“Sickle cell disease disproportionately impacts Black communities and can cause joint pain, prolonged fatigue and reduce oxygen flow,” English said. “With this bill, we can make it easier for people to access critical health care as we work toward closing the gap to accessing health care experienced by marginalized communities.”

Bacon said the program honors Taylor’s legacy “by providing individualized support to our community and works to bridge the health care gap, especially for those who have been underserved for far too long.”