This little girl deserves to be treated the same as anyone a couple of years older. Instead, she is kept at the bottom of the primary transplant waiting list and will die in a few weeks. --- The plight of a dying 10-year-old girl in urgent need of a lung transplant has been taken up by some GOP lawmakers, and itâs shining a light on what critics say is a questionable policy that puts children further down the waiting list. The family of the Pennsylvania girl, Sarah Murnaghan, has garnered the media spotlight, on cable news and in other outlets. And some GOP congressmen have joined the fray, quite literally âbeggingâ HHS Secretary Kathleen Sebelius to intervene and save the girlâs life. Both Pennsylvania senators â a Democrat and a Republican â have also written on the childâs behalf. âIâm begging you,â Rep. Lou Barletta (R-Pa.) told Sebelius at a House hearing Tuesday morning, asking her to suspend the transplant rules until they can be revisited. âSarah has three to five weeks to live. Time is running out.â The child has cystic fibrosis. At the hearing, Sebelius called the situation âagonizingâ and said she had talked to the girlâs mother. She has ordered a review of the policy, which she acknowledged would take too long to have any impact on this girlâs situation, but said it wasnât her place to pick and choose transplant recipients. âI canât imagine anything worse than one individual getting to pick who lives and who dies,â she said. Sebelius said putting Sarah next in line would disadvantage other young people who have also been waiting for transplants â including three in the same area. Helping one child could possibly hurt another. Some experts agree that the lung allocation policy may need to be revisited; it has been for kidney and liver transplants. But they say no snap decisions should be made because of the media glare. âShould Sebelius step in and do something? No. She doesnât have all the facts,â said NYU bioethicist Art Caplan. Acting under pressure from a media savvy family âor the noisiest person in lineâ is bad policy, he added. Transplant policy in the U.S. is made and administered by the Organ Procurement and Transplantation Network working with the United Network for Organ Sharing under contract with HHS. Itâs inherently charged and complex because there arenât enough organs for everyone who needs them, and people do die waiting. While Sebelius can certainly order a policy review, as she did in a May 31 letter to the procurement network, her authority to intervene in a specific case is unclear. Rep. Tom Price (R-Ga.) told Sebelius on Tuesday that ât simply takes your signatureâ to help this child. Caplan said: âIt isnât clear no matter how many congressmen yell at Secretary Sebelius that she has the ability to do anything.â The policy of setting transplant policy is complicated. OPTN has expert committees that draft proposals and submit them for public comment. Approved policies are subject to the secretaryâs discretion of enforcement or reconsideration, according to a summary of the regulations by OPTN. The policy that the Murnaghan and their advocates are questioning is one that puts children under 12 at the bottom of the waiting list for lungs from adult donors. Young children would be first in line for lungs donated by kids their age. But far fewer of those are available. In recent years, younger kids have been given greater priority for kidney and liver transplants, Caplan said, and that that is in-keeping with the desire of donors that their organs provide as much life as they can. A transplant into an older patient might not provide the same number of âlife years,â he said, an important consideration. But whether thatâs in order for lungs as well depends on the actual science of transplanting adult lungs into children, not just the instinct to save a child. Doctors can use an adult lung for a child, but they normally only use a piece of the organ. Another option that has been tried in some occasions: transplanting from a living donor, like a parent, Caplan said. The Murnaghan family issued a statement Tuesday afternoon in response to Sebeliusâs comments at the hearing, saying that they werenât asking for special treatment for their daughter alone, just that the odds be evened for adults and children waiting for lungs, regardless of the donorâs age. âAll we want is fair treatment for all of these children, including Sarah,â the statement said. âWe have yet to hear an explanation why the secretary will not do this.â http://www.politico.com/story/2013/06/kathleen-sebelius-childs-lung-transplant-92237.html