Sarah Murnaghan is a 10-year-old girl that suffers from CHOP cystic fibrosis. Murnaghan was moved to the adult lung-transplant list earlier this month. Shortly after being added to that list, she received a pair of adult lungs. Murnaghan recently came out of a medically induced coma and is communicating with her family by nodding.
The number of U.S. organ donors has not really changed in the last twenty years. Unfortunately, the demand for organs has grown tenfold. Around 5,000 to 10,000 Americans die per year with organs that can be used for transplants.
American Journal of Transplantation reported that Murnaghan was able to benefit from a social media campaign driven by Johns Hopkins School of Medicine professor Andrew M. Cameron and Facebook COO Sheryl Sandberg.
When Cameron and Sandberg talked at their Harvard class reunion in 2011, they came up with the idea. The two of them came up with the idea of adding their organ-donor status on the Facebook timeline in May 2012. There is an option to include links where Facebook users can officially register their donor status with the state department of motor vehicles.
The Facebook feature went live on May 1, 2012. Over 57,000 Facebook users indicated their organ donor status online and over 13,000 registered for the first time as organ donors.
How Social Media Helped
Janet Murnaghan is a stay-at-home mother of four that lives in Newtown Square, Pennsylvania. She used to work in communications and graduated from Villanova University. She launched a campaign on Change.org and it hit the top 1% of its petitions, according to ABC.
“Five, 10 years ago, this wouldn’t have happened,” stated Dan O’Connor, a staff member that specializes in ethics of social media and health care at Johns Hopkins Berman Institute of Bioethics. “Her primary goal was to save her daughter’s life. Anyone in that situation would use whatever tools were available to them.”
In Janet’s Change.org campaign, she highlighted the Under 12 Rule, which is an organ transplant policy she said that was pushing Sarah to the bottom of the adult lung transplant list. However, Sarah was eligible for the adult lung transplant list. The Under 12 Rule said that Sarah would be given priority when pediatric lungs became available, adult lungs would have to be offered to adult matches in her region before they could be offered to her.
Around 30,000 petitions are added to Change.org per month. Janet’s petition went viral and hit over 10,000 signatures over Memorial Day. The petition even passed 370,000 signatures.
Politicians became interested in this case and they asked Secretary of Health and Human Services (HHS) Kathleen Sebelius to look into making an exception. The HHS did not make the exception, but the law firm Pepper Hamilton LLC took the case to court. A federal judge issued a temporary restraining order that prevents Sebelius from enforcing the rule for Sarah. On June 10th, the Organ Transplantation and Procurement Network ended up reevaluating the Under 12 Rule. They decided to create a mechanism to make exceptions on a case-by-case basis. Sarah’s case was expected to be reviewed on June 14th, but she received a transplant the day before.
Janet launched a new campaign on gofundme.com for $10,000 to help pay for Sarah’s medical expenses. The Murnaghan family raised $3,586 in four days through the campaign.