June 26, 2013 -- Regardless of whether one agrees that 10-year-old Sarah Murnaghan should have gotten an adult lung transplant, one thing is clear: Sarah's mother figured out how to turn the Internet into a megaphone to fight for her daughter.
"Not every story catches media attention," said Dan O'Connor, who specializes in the ethics of social media and health care at the Johns Hopkins Berman Institute of Bioethics. "It's like lightning in a jar."
Janet Murnaghan may currently be a stay-at-home mother of four in Newtown Square, Pa., but she wasn't always, according to her Facebook profile. The Villanova University graduate used to work in communications, and some of that know-how certainly paid off. Her Change.org campaign was in the top 1 percent of its petitions, and the attention ultimately led to Sarah's lung transplant.
"Five, 10 years ago, this wouldn't have happened," O'Connor said, adding that storytelling through social media gives patients and their families a sense of control they lose during illness. "Her primary goal was to save her daughter's life. Anyone in that situation would use whatever tools were available to them."
Murnaghan started with a Change.org petition, calling attention to what would become known as the Under 12 Rule, an organ transplant policy she said was pushing Sarah to the bottom of the adult lung transplant waiting list even though she was eligible for adult lungs. The rule said that even though 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.
But 30,000 petitions are added to Change.org each month, said Change.org spokeswoman Megan Lubin. Somehow Murnaghan's petition went viral, starting with 10,000 signatures over Memorial Day weekend that eventually surpassed 370,000 signatures. It's in the top 1 percent of Change.org petitions.
"If you read that story, it's actually difficult to not want to do something," Lubin said.
O'Connor said that although a lot of the Murnaghan attention was probably the result of being at the right place at the right time, people's gut reactions to hearing about the Under 12 Rule certainly helped generate buzz.
"We're used to giving children everything first," O'Connor said, adding that even though there were scientific reasons for the policy to be the way it was, it seemed strange to the public that children would get adult lungs last.
Once the change.org petition took off on Memorial Day weekend, politicians took interest. They asked Secretary of Health and Human Services Kathleen Sebelius to make an exception for Sarah, but the HHS secretary refused. Soon, the law firm Pepper Hamilton LLC offered its services to the Murnaghans for free. The firm started with a letter to Sebelius and went to court the following day.
On June 5, a federal judge issued a temporary restraining order to prevent Sebelius from enforcing the rule for Sarah. By June 10, the Organ Transplantation and Procurement Network re-evaluated the Under 12 Rule and decided to keep it but created a mechanism for exceptions to be made depending on the case. Sarah's case was expected to be reviewed in court on June 14, but she got her transplant the day before.
On Saturday, June 22, Sarah woke up after nine days of sedation. She is expected to be taken off her ventilator and breathing on her own toward the end of the week, Murnaghan wrote on her Facebook page.
And now, the Murnaghans are using a new social media tool, gofundme.com, to raise $10,000 to pay for expenses associated with Sarah's treatment. In addition to updating Sarah's supporters on her condition, Murnaghan promised to post a video of her "awake and fully experiencing her new lungs."
O'Connor said telling health stories has become increasingly popular over the past few years, in part because all anyone needs to tell a story and generate buzz today is a cellphone or an Internet connection.
"You don't need to be friends with the director of your local newspaper," he said. "You don't need to have gone to the same college as a news anchor."
The Murnaghans raised $3,586 in four days.
Lubin said health petitions have done especially well on Change.org since she started working there a year and a half ago.
"People are winning and winning at really increasing rates," she said, adding that these victories can vary from getting better rates for certain procedures to prompting a review of the federal organ transplant policy. "It's been fascinating."