Campaign Saves 10-year-old Girl & Changes Federal Policy on How Donor Lungs Are Allocated to Children
On Memorial Day weekend 2013, Janet Murnaghan, a friend and former PR colleague whose daughter had end-stage cystic fibrosis, reached out for help. She had spent three months at Children’s Hospital of Philadelphia (CHOP) with her 10-year-old daughter, Sarah, who had little more than a few weeks to live. Though Sarah had been on the lung transplant list for 18 months, the family had just learned that a federal policy was preventing them from getting the lungs Sarah needed to live.
Alongside a dedicated group of Philadelphia PR colleagues, affectionately called “Team Sarah,” I led a media relations effort awareness campaign for the Murnaghans, aimed at putting pressure on U.S. officials with the power to change a federal policy that discriminated against children under 12 in the allocation of adult donor lungs.
With little time to work, “Team Sarah” humanized a complicated federal policy.
Within 24 hours, CNN broke Sarah’s story, triggering thousands of news outlets around the world to jump on the news and follow Sarah’s story daily for over a month, and then throughout her eventual recovery.
As part of the media campaign, Team Sarah engaged state and federal legislators for their support, and regularly briefed them on the situation, created template letters that could be utilized by concerned citizens, and circulated a petition that garnered 400,000 signatures (a Top 5 Change.org campaign of all time).
Highlights:
Generated a round-the-clock, global story.
Team secured support from four members of Congress, as well as Pennsylvania’s governor, who publicly called for an immediate change in the “Under 12 Rule.” Elected officials used their time during a C-SPAN nationally televised legislative hearing to question Secretary Sebelius about her refusal to change the policy.
Law firm Pepper Hamilton, took on Sarah’s case pro bono.
Two weeks from the campaigns start, a federal judge granted Sarah and another boy - Javier Acosta a temporary restraining order that allowed them to be considered for an adult lung transplant.
The U.S. organ board unanimously passed a resolution that allowed children under 12 to be considered for the adult lung transplant list on a case-by-case basis. This rule was later made permanent based on further review.
Sarah received adult donor lungs. Today she is a teenager living in Florida who loves spending time with her brothers, sister and cousins (and on her phone).
The work of “Team Sarah” garnered the 2014 PR Week Public Affairs Campaign of the Year and is now a published PR case study taught in college classrooms.
Five years later, launched family’s book called, “Saving Sarah” with a media tour of New York City and Philadelphia, with appearances on Fox and Friends; Good Morning America; the front page of the Philadelphia Inquirer and Daily News; KYW News Radio, and Fox Philadelphia.
