Case Studies

Campaign Saves 10-year-old Girl & Changes Federal Policy on How Donor Lungs Are Allocated to Children

On the morning of Friday, May 24, 2013 (Memorial Day weekend), Janet Murnaghan, a friend and former PR colleague whose daughter had end-stage cystic fibrosis, needed 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.

A dedicated group of Philadelphia PR pros, affectionately called “Team Sarah,” quickly rallied to build an awareness campaign for the Murnaghans aimed to put pressure on U.S. officials with the power to change the current federal policy that discriminated against children under 12 in the allocation of adult donor lungs.

With little time to work, “Team Sarah” worked to humanize a complicated federal policy. 

Tactics/Execution

Message Development/Dissemination: With team communications managed solely through Facebook’s IM platform, a daily strategy, messages, and media materials guaranteed consistency across all communications.

Change.org Petition: A Change.org petition engaged and educated the public on the issue and drove an email campaign. Petition: http://www.change.org/petitions/optn-unos-change-policy-to-allow-pediatric-transplants-of-adult-lungs-based-on-medical-necessity 

Media Relations: Within hours of Janet’s, CNN broke Sarah’s story at CHOP, triggering thousands of news outlets around the world to jump on Sarah’s story to push the online petition. National broadcast, print and wire outlets followed Sarah’s story daily and, to manage this fast and furious attention, Team Sarah huddled daily with the family to provide steady and accurate updates to the press.

Grassroots/Legislative Outreach: Team Sarah engaged state and federal legislators and regularly briefed them on the situation, and created template letters that could be utilized by concerned citizens.

Evaluation/Results

An immediate, all-volunteer, zero-dollar campaign resulted in the following (chron. order):

• An international media story with approximately six billion trackable impressions, and still growing today (2018).

• 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. Click here to see video.

• One of the “top five most successful” Change.org petitions of all time, that garnered close to 400,000 signatures.

• Law firm Pepper Hamilton, took on Sarah’s case pro bono.

• On June 10, just two weeks from the campaigns start, a federal judge granted Sarah and another boy - Javier Acosta, also being cared for at CHOP with end-stage cystic fibrosis, a temporary restraining order that allowed them to be considered for an adult lung transplant based on their Lung Allocation Scores.

• Further, on June 10, 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.

• On June 12, Sarah received adult donor lungs. While this set of compromised lungs failed, the new U.S. policy allowed Sarah to go back on the adult donor list for a second set of lungs, which she received days later. The second surgery was a success.

• Sarah left CHOP on August 27 to recuperate at home. 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: http://cssc.uscannenberg.org/wp-content/uploads/2014/12/v3art5.pdf.