Posted: 5:31 p.m. Tuesday, June 4, 2013
By Mary Agnes Carey
A child in desperate need of a lung transplant clinging to life. Long waiting lists of patients who need organs and too few donors to meet the demand. Rules that govern who gets what life-saving organs – and when.
Department of Health and Human Services Secretary Kathleen Sebelius had to confront all those issues on Tuesday when Republican lawmakers asked her repeatedly why she would not use her authority to make sure a 10-year-old Pennsylvania girl gets a lung transplant that could save her life.
Sarah Murnaghan, who is suffering from end-stage cystic fibrosis, needs a lung transplant or will die in two to three weeks. Current organ donation rules make her ineligible for an adult lung and there are fewer children’s lungs that come available. She has been on a waiting list since 2011, according to published reports. The Organ Procurement and Transplantation Network, whose duties include collecting and managing scientific data about organ donation, says that nearly 1,700 people nationwide are waiting for lung transplants.
Rep. Tom Price, R-Ga., drilled Sebelius about the situation during a Capitol Hill hearing on the HHS budget Tuesday. Murnaghan cannot get the transplant she needs “because of an arbitrary rule that if you’re not 12 years old, you’re not eligible to receive an adult lung,” said Price, who is a physician. “Madam Secretary, I would urge you this week to let that lung transplant move forward … It simply takes your signature.”
Sebelius said she has spoken with the girl’s mother and “can’t imagine anything more agonizing” than what the family is going through. Sebelius said about 40 very seriously ill people in Pennsylvania over the age of 12 also are waiting for a lung transplant, as are three other extremely sick children in the same Philadelphia hospital as Murnaghan.
“I would suggest that the rules that are in place and are reviewed on a regular basis are there because the worst of all worlds, in my mind, would be to have some individual picks who lives and who dies,” she said. “I think you’d want a process guided by medical science and medical experts.”
That answer didn’t satisify Rep. Lou Barletta, R-Pa.
“Why do we have such bullcrap around this place and we have the chance to save someone’s life. … Why wouldn’t we do this?” he asked.
While Sebelius has ordered a review of transplant rules to analyze their fairness, “a study will take over a year [and] this young lady will be dead,” Price said at the House Education and the Workforce Committee hearing.
After the hearing, Sebelius told reporters that HHS lawyers “very much disagree that there is any ability for an individual to reach in” and change the current organ rules.
Kaiser Health News is an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communications organization not affiliated with Kaiser Permanente.