The case of Sarah Murnaghan, a 10 year old girl in Philadelphia with end stage lung disease due to cystic fibrosis, has captured the attention of the American public since it was picked up by the mainstream media. This unfortunate child would have certainly died without a lung transplant, and apparently, the only one standing in her way was Kathleen Sebelius, the Secretary of Health and Human Services, whose signature would have cleared the way for Sarah to be placed near the top of the transplant list, because of the severity of her disease. A federal court intervened, and Sarah received her lungs, but this case is instructive in illustrating the problems inherent when medicine and politics are intertwined.
Issues such as these are commonplace in the medical arena. Doctors are routinely confronted with situations which pose medical, moral, and legal challenges, as they decide how best to care for their patients. Should parents who are Jehovah’s Witnesses be permitted to withhold a life-saving blood transfusion from their child? Do parents have the right to have a baby for the purpose of donating stem cells to another child who would die without such a transplant?
These medical dilemmas can be gut-wrenching, complex, and multi-faceted, often without a clear cut solution. Consequently, most medical institutions have bioethics committees to help resolve these difficult problems, because medical decisions cannot always be based on a “one size fits all” algorithm. These decisions must recognize that each individual and often each medical situation is unique.
In the case of transplantation of solid organs, another problem arises- that of scarcity of resources. When one patient receives an organ, it means that another who might be just as ill and equally deserving of such an organ will be denied. Because there are not enough organs to satisfy the needs of all who need them, there are protocols that have been developed to help determine the most equitable way to make the best use of a valuable commodity. These protocols have been developed by transplant surgeons and other specialists at UNOS (United Network for Organ Sharing ) based upon the best available medical information at the time that they are created.
There can be problems with this approach. The first is that medical innovation is rapid in this field, so that by the time that protocols become official policy, they are often outdated. In the case of Sarah, techniques have been developed such that pediatric thoracic surgeons can now successfully use adult lungs in children. Whether this procedure is indicated in her case should be a private determination involving her parents and her physicians. Possible deviations from guidelines should be reviewed by medical experts already invested in this process, not politicians, bureaucrats or judges. Often, when medical policy becomes the purview of bureaucrats, there is little room for deviation, no mechanism to evaluate individual cases, and no way to make exceptions.
Ironically, the Affordable Care Act (ACA, Obamacare) has given Secretary Sebelius incredible and unprecedented latitude regarding virtually all aspects of American health care decision making. The ACA left the regulatory scope of the law including the powers granted to the Secretary intentionally vague, potentially allowing her office unlimited oversight into every aspect of healthcare.
An equally frightening reality involves Secretary Sebelius’ new partner in the execution of Obamacare - the Internal Revenue Service (IRS). The recent revelations regarding their lack of impartiality in applying tax policies to political opponents of the Obama administration are unforgivable. But now, the IRS will be intimately involved in healthcare, in ways that we currently do not fully understand. At the very least, they will determine based upon your tax records, the level of federal subsidies an applicant will receive to assist with the purchase of health insurance inside of the new state exchanges. The IRS will also determine the penalty should someone choose not to purchase insurance.
Given their track record, all Americans should be worried about the potential for abuse by some “rogue” agents who could theoretically target groups of Americans and delay applications or interfere with medical care if their political views vary from those of the President.
The Sarah Murnaghan case should not be used to make a scapegoat of Kathleen Sebelius. Neither she, nor her office should have been involved in this case at all. That the ACA vests such broad sweeping power in the hands of one non-physician federal bureaucrat should be lost on no one, and should give pause to all who supported this massive law. The further we take medical decisions away from patients and their doctors, the greater the potential for abuse and for possible politicization. We cannot have bureaucrats and regulations coming between us and our medical care. The recent scandals involving government agencies that have become too large and unaccountable should be a wake-up call for all Americans. It is precisely why we need less government in healthcare, not more.
Hal Scherz is the President & Founder of Docs4PatientCare. He is a full time pediatric urologist at Children’s Hospital of Atlanta and a clinical associate professor of urology at Emory University.
Please visit http://www.docs4patientcare.