Specter and Casey Introduce Nino’s Act

Will ensure continuous treatment for sick children upon exiting NIH studies

Washington, D.C.— U.S. Senators Arlen Specter (R-Pa.) and Bob Casey (D-Pa.) today introduced legislation that seeks to provide continuous care to children as they transition out of research studies with National Institutes of Health (NIH).  Nino’s Act will ensure that successful treatments received through the studies are covered under Medicaid if the child’s insurance carrier does not recognize the experimental treatment.

Nino’s Act is named after Nino Todaro, a young boy from Neuville, Pennsylvania who suffers from a rare disease known as Undifferentiated Auto-Inflammatory Periodic Fever Syndrome.  Nino’s devastating symptoms were successfully managed with experimental drugs during participation in an NIH study, but he faced a recurrence of the disease upon the study’s completion when his insurance carrier did not initially cover the cost of treatment.  Nino’s Act seeks to ensure that the thousands of children that are successfully treated during an NIH study, such as Nino, have access to the care they need following the study’s conclusion.

“NIH studies represent an opportunity for the medical community to learn more about unique diseases and for children to be treated by the best researchers in the world,” Specter said. “Nino’s Act seeks to amplify NIH’s contributions to our nation’s health by allowing America’s sickest children to continue their treatment under Medicaid coverage.”

“Nino’s Act will allow children to transition out of successful treatment in NIH studies without a gap in treatment,” said Casey.  “There are thousands of children like Nino across this country who desperately need the continuity of ongoing successful treatment for their rare disorders.  These are children who have been very ill, sometimes incapacitated, and have been able to resume normal childhoods through successful drug treatment.” 

The bill has been introduced in the Senate and will be referred to the Senate Committee on Finance for consideration.

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