Campaign to Save 10-year-old Girl Leads to Change in Federal Policy on How Adult Donor Lungs Are Allocated to Children
On the morning of Friday, May 24, 2013 (Memorial Day weekend), Janet Murnaghan, a friend whose daughter had end-stage cystic fibrosis, sent a frantic note asking 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.
That holiday weekend, I worked to pull together a dedicated group of Philadelphia PR pros, affectionately called “Team Sarah,” to build awareness of Sarah’s situation that would put pressure the U.S. organ board and the Department of Health and Human Services to reconsider the current federal policy that discriminated against children under 12 in the allocation of adult donor lungs.
With little time to work, we built a campaign to humanize the complicated federal policy.
Message Development/Dissemination: With team communications managed solely through Facebook’s IM platform, we created a daily strategy, messages, and media materials which guaranteed consistency across all communications.
Change.org Petition: A Change.org petition was developed to engage and educate the public on the issue at hand and drive 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 receiving the first call from Janet, CNN was secured to break the story at CHOP. Thousands of news outlets around the world followed suit covering Sarah’s story and directing the public to the petition. CNN, Fox News, and many others followed Sarah’s story daily and continue to feature updates. To manage this fast and furious attention, Team Sarah huddled daily with the Murnaghans to provide steady and accurate updates to the media. We also hosted three major press briefings.
Grassroots/Legislative Outreach: Team Sarah contacted state and federal legislators and briefed them on the situation. We also provided a template for letters from concerned citizens directed to local representatives.
We mobilized an immediate, all-volunteer, zero-dollar budget campaign resulting in the following (chronologically listed):
- An international media story with approximately six billion trackable impressions, launched on May 24, 2013 and continuing through the present.
- 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, garnering close to 400,000 signatures.
- Law firm Pepper Hamilton, took on Sarah’s case pro bono.
- On June 10, 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.
- The U.S. organ board unanimously passed a resolution on June 10 (two weeks after the start of the campaign) to allow children under 12 to be considered for the adult lung transplant list on a case-by-case basis. It continues to evaluate the policy and will render a final decision by June 2014.
- Sarah received adult donor lungs on June 12. 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 realized a few of her dreams: leaving CHOP on August 27 to recuperate at home and celebrating her 11th birthday with her brothers, sister and cousins.
Writing and editing for the Salvation Army of Philadelphia's community newsletter.
I have served as the media relations contact for the UM’s School of Business Administration since 2008.
I worked closely, while at Wharton, with a former dean of the Undergraduate Division who left for a stint to become the dean of UM’s School of Business. When I started tlsimonPR, I was happy to secure UM as my first client.
The ongoing goal of my work here is to build visibility of the School of Business, its programs, research, faculty, events, alumni and its location that sets it apart as a training ground for Latin American executives.
Here is a sampling of some great news coverage we’ve accomplished…