Pediatric Diseases' Research Pushed

By Schmitt, Ben | Tribune-Review/Pittsburgh Tribune-Review, August 1, 2015 | Go to article overview

Pediatric Diseases' Research Pushed


Schmitt, Ben, Tribune-Review/Pittsburgh Tribune-Review


Adelyn Rinaldi is 2 months old and surviving in a hospital bed on enzyme therapy that treats a rare bone disorder called hypophosphatasia.

Only about a dozen living children have her form of the disease worldwide, her mother said.

"They don't usually live," said Jennie Rinaldi of Somers, Conn.

But her treatment at Children's Hospital of Pittsburgh of UPMC gives her family hope.

"It's been a great experience so far, and her X-rays show improvements," Rinaldi said.

On Friday, Children's Hospital served as the centerpiece for a news conference by U.S. Sen. Bob Casey, D-Scranton, about bipartisan legislation he calls the Advancing Hope Act, which would expand and fund more research into rare pediatric diseases.

In 2012, Casey helped author legislation that awarded vouchers to drug companies that earned approval of therapies for such diseases. The program expires next year, and Casey wants to make it permanent.

Under the proposed legislation, if a drugmaker shows progress in treatments, a voucher gets "priority review" by the Food and Drug Administration and can be approved more quickly, creating incentive for the drugmaker to conduct additional research. …

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