We present our 2015 Advocacy award to Senator Pat Toomey for organ donor awareness and disability advocacy.
Senator Pat Toomey joined the U.S. Senate in 2011. In May of 2013, he became acquainted with the story of a ten-year-old girl living in Philadelphia who was fighting for her life following a cystic fibrosis diagnosis. Sarah Murnaghan desperately needed a double lung transplant, but according to the Under 12 Rule established by the Organ Procurement and Transplantation Network, Sarah would not be able to join the waiting list for an adult double lung transplant until she turned twelve. Far fewer lungs are available for children under 12 than for adults. As Sarah’s chances of a lifesaving transplant grew slim, her parents launched a desperate online campaign to change transplant regulations to save Sarah’s life.
With only weeks left to live without a transplant, Sarah was granted a ten-day period in which she would be placed on the adult transplant list. After those ten days, she would return to the children’s transplant list. As Sarah and her family waited and appealed to their government in a state of desperation, Senator Toomey addressed the U.S. Senate to appeal to Kathleen Sebelius, the Secretary of Health and Human Services, on Sarah’s behalf.
“I rise to speak briefly about a heartrending situation in Pennsylvania,” Toomey said. “There is a brave little ten-year-old girl who is fighting for her life at the Children’s Hospital of Pennsylvania in Philadelphia. At this moment, her government is failing her…The girl is a good candidate, but she’s not on the list.”
Toomey stressed the importance of making a permanent change to the rule, not a one-off exception for Sarah. “What we want is a system that works,” he said. “I think that any child who is a viable candidate for the adult transplant and who has sufficiency urgency ought to be able to go on the adult list. We’re not suggesting that we make an exception for Sarah…stop making exceptions that exclude Sarah. We’re asking for a change in a policy that is flawed.”
Senator Toomey’s appeal on behalf of Sarah worked. The Organ Procurement and Transplantation Network not only allowed Sarah to be placed on the adult waiting list, they agreed to allow children under 12 to be given case-by-case exceptions based on their eligibility and health condition.
Today, after a successful double lung transplant with adult lungs, Sarah is breathing on her own for the first time in years. Senator Toomey took a stand on the Senate floor, and his advocacy saved Sarah’s life and impacted dozens of other families in need.
Senator Toomey’s advocacy initiatives extend to multiple areas that impact HelpHOPELive clients. With Senator Bob Casey, he supported the bipartisan Achieving a Better Life Experience bill, proposed to help families to save funds for their loved ones living with disabilities.
The Advocacy award will be presented to Senator Toomey at this year’s HelpHOPE-Live It Up! benefit on October16.
Each year at HelpHOPELive’s annual signature fundraising event, HelpHOPE-Live It Up!, we honor community heroes who prove why our mission matters with the Help, HOPE and Live awards. In 2015, we’re also giving out an Advocacy and Volunteer of the Year award.