GBT Backs Passage of Expansive SCD Treatment Centers Act
Bill would allow $535M in sickle cell spending, create treatment center network
Global Blood Therapeutics (GBT) supports the recently introduced Sickle Cell Disease Treatment Centers Act of 2022 (HR 8855/S 4866), which calls for $535 million in annual funding for sickle cell disease (SCD) treatment, research, and education.
Introduced on Sept. 15, the legislation would create a national network of SCD treatment centers wherein healthcare providers would partner with community-based organizations to optimize care delivery, including psychological support. The collaboration would also help boost disease education and understanding among patients and families, offering more ways to cope with the disease.
“Sickle cell disease has long suffered from a lack of attention, investment and innovation, resulting in a lack of access to high-quality health care for those living with this devastating condition,” Ted W. Love, MD, GBT’s president and CEO, said in a press release. “Since our founding, GBT has been committed to partnering with the community to address and overcome these health inequities. The introduction of the Sickle Cell Disease Treatment Centers Act of 2022 marks a significant step toward equitable access for the sickle cell community by potentially creating the infrastructure of coordinated care that is so desperately needed, in addition to increasing education and broader community support.”
The centers would be based on a hub-and-spoke model linked through national and regional coordinating centers, which would facilitate data collection, monitoring, and distribution. The coordinating centers would also serve as a repository of best practice guidelines, and promote the publication of scientific and educational materials, and public awareness and outreach efforts.
The measure would fund at least 128 SCD treatment centers and 100 community-based organizations, or nonprofits.
The Council for Sickle Cell Disease Health Equity, an advisory council established by GBT, worked alongside the bill sponsors to develop the legislation.
“The key elements of the Sickle Cell Disease Treatment Centers Act of 2022 are based on a vision developed by a diverse group of stakeholders representing individuals living with sickle cell disease, caregivers, advocates, community-based organizations, physicians, and payers,” Biree Andemariam, MD, director of the New England Sickle Cell Institute at the University of Connecticut, said. “The introduction and passing of this act have the potential to dramatically improve the lives of individuals living with sickle cell disease across the United States.”
Andemariam said setting up and funding treatment centers would improve access to expert care, “filling a longstanding inequity and largely ignored gap in the current healthcare landscape for the sickle cell disease community.”
GBT is the developer of Oxbryta (voxelotor), a daily oral therapy available in the U.S. to treat SCD patients as young as 4. It’s also been approved to treat patients ages 12 and older in Europe, Great Britain, and the United Arab Emirates.
The company has other possible sickle cell treatments in its pipeline, including inclacumab and GBT601 (also called GBT021601). Both have been granted orphan drug and rare pediatric disease designations by the U.S. Food and Drug Administration (FDA).
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