The obstruction of medical progress by a blind bureaucracy is the future we all face under Obamacare, where bureaucrats will make arbitrary rulings that affect your health. Without a doctor ever seeing you or knowing your story, you may get handed a life-and-death decision, with little chance for appeal. We saw a foreshadowing of this brave new world last week when HHS Secretary Kathleen Sebelius refused to approve the waiver that would have put a dying child on the adult-lung transplant list.
Sebelius could have chosen to overturn the outdated policy — the Organ Procurement and Transplantation Network’s Under 12 Rule — that kept ten-year-old Sarah Murnaghan from being considered for an adult lung at the Children’s Hospital of Philadelphia even though she was sick enough to belong at the top of the list. Dr. Samuel Goldfarb, medical director of the lung-transplantation program at CHOP, acknowledged that children can successfully receive adult lungs, but the bureaucracy disregarded his input.
The allocation of limited resources automatically involves some form of rationing. That’s a daily fact of life in medicine, whether we are talking about scarce chemotherapy or emergency heart drugs or the fewer than 2,000 donor lungs that are available for transplant every year.
One can only hope that scarce medical resources make it to those who need them the most. It is only when this happens that the health-care system is actually working. That’s why loving parents everywhere, who naturally put their child’s needs before their own, were cheering this week when Sarah, suffering from end-stage cystic fibrosis, was snatched from the jaws of death to receive healthy new lungs after the family hired a pro bono lawyer and a federal judge issued a temporary restraining order against the Under 12 Rule. Fox legal analyst Peter Johnson and Fox News brought the case to national attention, putting pressure on government officials to do the right thing. The judge’s courageous science-based decision as well as the Fox-led debate helped educate the public and laid the groundwork for offering the best care to children who need organ transplants across the country.
In contrast, Sebelius played a cruelly obstructive role: Since she wasn’t a physician, she wasn’t in a position, she claimed, to disregard or overturn the policy. One shudders to think of how many people will be denied essential care because of this head-in-the sand approach under Obamacare.
Let’s look at the medical facts of Sarah’s case:
According to Dr. Frank D’Ovidio, surgical director of the Lung Transplant Program at Columbia University Medical Center, “the long-term prognosis using parts of adult lungs [with immuno-suppression] in children is excellent.” Dr. D’Ovidio pointed out to me that “of all the end-stage lung diseases, cystic fibrosis has the best survival for lung transplant.” The survival after one year is close to 90 percent, and 75 percent after five years. Dr. Bob Giusti, pediatric pulmonologist and CF expert at NYU Langone Medical Center, added that once the lungs are transplanted, CF patients do quite well, though they need to be watched for signs of infection, risk of rejection, and tolerance of immuno-suppressive drugs. Other complications of the disease involving the pancreas and sinuses can be managed. Both experts said they felt it was wise that children like Sarah be considered for the adult list.
So why did Sebelius refuse to make an exception or create a new policy, both well within her powers? I wish the answer were an isolated display of poor judgment, but it points instead to the flaws at the heart of Obamacare, where arbitrary bureaucratic rulings and archaic regulations will take the place of independent, case-by-case judgments by informed, caring physicians.
Some kind of rationing is inevitable with scarce medical resources, but with death-panel Sebelius in charge, patients who need care the most, such as Sarah, may not be the ones to receive it.
— Marc Siegel is an associate professor of medicine at New York University and medical director of Doctor Radio at NYU Langone Medical Center. He is a Fox News medical contributor and author of The Inner Pulse: Unlocking the Secret Code of Sickness and Health