Bill would authorize grants for sickle cell treatment networks

The federal health secretary would award grants for network-based sickle cell treatment centers. Each eligible network must link a comprehensive-care hospital, clinic, or university health center with at least one partner provider and one community nonprofit. The bill authorizes future spending but does not guarantee that Congress will provide money. Funded work must add to, rather than replace, other authorized federal sickle cell activities. When practical, awards would focus on areas with high rates of inherited blood disorders while supporting nationwide access. Congress could fund the program beginning in fiscal year 2027 and each fiscal year after that.

Eligible networks could use grants for insurance help, travel support, telehealth access, testing, and counseling. Insurance and travel help would cover sickle cell patients, while telehealth access could also cover people with sickle cell trait. Insurance premiums and patients' shares of costs could be paid only when state and federal law allow it. These uses would be optional and would depend on receiving a grant. Congress could fund these grant uses beginning in fiscal year 2027 and each fiscal year after that.

The federal health secretary would establish a national coordinating center and direct the CDC to run data activities for the treatment centers. The center would coordinate grant recipients, advise on a national care strategy, support care networks, and educate the public. CDC work would track grant activities, disease patterns, outcomes, complications, and care. The secretary could operate the coordinating center or use an agreement with another organization. The work would depend on money Congress later provides. Within 180 days after enactment, the secretary would seek public feedback. An impact report would be due within three years and every five years after.