- - Monday, June 10, 2013

Kathleen Sebelius, secretary of the Department of Human Services (HHS), is on the hot seat because a little girl with cystic fibrosis is dying, and Mrs. Sebelius is the “death panel of one” who tried to stand between her and a lung transplant.

Mrs. Sebelius has been criticized for her cold and callous bureaucratic attitude in refusing to issue a waiver for the rule that keeps Sarah Murnaghan off the adult transplant list. Now a federal judge has ruled that she must be given a waiver.

The question we should be asking, however, is this: Why does Mrs. Sebelius have the power to keep Sarah off the list, or the judge the power to override her? Neither probably knows anything about transplant surgery, and neither is responsible for Sarah — or for the adult who won’t get the lungs if Sarah does. The federal government has no constitutional authority to interfere in the practice of medicine. Yet with Obamacare, we can expect to see more and more politics in medical decisions. Sarah and other patients will be like gladiators in “The Hunger Games,” competing for sponsors to help them win a dispensation from the general deprivation.

Transplantation is a special case in that it is inevitably a zero-sum game. There are not enough organs, and when one person receives a transplant, someone else is denied. By the way, the donor has to die. This raises chilling possibilities, as explored in Robin Cook’s novel “Coma” and my novel, “Neomorts.”


With the expansion of price controls and other government diktats, artificial shortages are also inevitable. The secretary has enormous discretion under Obamacare to dispense or withhold approvals or waivers. She’s supposed to use her power to optimize population health, reduce disparities and achieve other politically desirable goals.

Under the Complete Lives System, she could decide that 10-year-old Sarah, or her 70-year-old grandmother, shouldn’t be eligible for any scarce resource. To reduce disparities, she could order that minorities be moved ahead on the transplant waiting list, even if the organs aren’t as good a match and are more likely to be wasted. Or she might decide that transplants should not be done at all, so that more prevention could be funded. Just think how many abortions we could buy for the cost of one lung transplant.

Sarah’s family probably cannot afford to pay for a lung transplant, so they must depend on government funding — and thus, on the secretary. Their options are restricted to what the government will pay for. In a true free market, options other than an adult lung transplant might be available — possibilities that are now excluded from third-party payment on some pretext, say a designation of “experimental.”

Might it be possible to transplant a lobe from a living, related donor, as is happening with livers? Could Sarah’s own stem cells be used to build her a new lung on a scaffold prepared from a cadaver or animal lung? Might a medical therapy be developed to forestall or repair the damage inflicted by cystic fibrosis? What rapid progress might we see if government got out of the way, and insurance paid an indemnity the patient might use as she chose?

Even now, could there be hope for Sarah? One way to drive more oxygen into the blood is breathing it under pressure in a hyperbaric chamber — at low pressures, say 1.1 to 1.3 times atmospheric to avoid oxygen toxicity. Lung disease is a relative contra-indication. However, the now-deceased renowned scientist Edward Teller reported that his wife, emaciated and bedridden from chronic obstructive lung disease, with an estimated life expectancy of two months, became alert, well-nourished and ambulatory, and lived for years with this treatment. Insurance generally refuses to pay. Chambers, by the way, can be as large as a hospital.

Sarah needs a doctor who is free to think innovatively and to advocate for his patient as he thinks best, without having to curry favor with the Department of Health and Human Services.

None of us want Mrs. Sebelius to be our doctor — nor do we want our doctor to be her serf.

Dr. Jane M. Orient practices internal medicine in Tucson, Ariz., and is executive director of the Association of American Physicians and Surgeons.