The San Francisco Chronicle has been covering a case of a young boy with metatropic dysplasia, a disease so rare, according to the Chronicle, that it appears there is only one surgeon in the US, Dr. William MacKenzie at the duPont Hospital for Children in Delaware, who has experience treating it.
(A quick PubMed search did corroborate the disease's rarity, revealing only 27 articles ever published on it. The most recent case report, from 2005, noted that only 67 cases have been reported world-wide.)
Yet, Health Net, the family's managed care organization, has resisted four appeals to authorize payment to Dr. MacKenzie.
Chronicle columnist, C. W. Nevius, wrote, "HMOSs never want to hear about rare diseases." He quoted a local health care advocate, "When you have to fly a patient out to the East Coast, it is a fundamental HMO no-no. It is the M.O. [modus operandi] of health care providers [presumably meaning HMOs] to deny access to expensive treatments. They give you the runaround and hope you go away."
The HMO in question, Health Net, which initially failed to respond to Nevius' requests for comments, apparently was not moved by a note from the patient's primary care physician that "it is imperative" that he see the East Coast specialist. The Chief of Pediatric Orthopedics of University of California- San Francisco, Dr. Mohammad Diab, admited he had no experience with the necessary surgery, but suggested it be done fast, "the door is closing, if not closed."
After the story appeared in the Chronicle, Health Net partially relented, according to Nevius' next column, authorizing a consultation with the specialist, but no further treatment. David Olson, the Senior Vice President for Corporate Communications, dismissed the notion that the patient is in imminent danger, calling it a "typical lawyer ploy. There is nothing in the record to indicate that something has to happen right now."
This sort of heavy-handed approach to cost-containment is what sparked the anti-managed care backlash in the 1990's. As is usual for managed care, the emphasis seems to be on restricting access to care, rather than on bargaining down the costs of egregiously high-priced goods and services.
Moreover, focusing on restricting treatments for patients with rare diseases will almost never be truly evidence-based, because rare diseases will not be subject to studies of sufficient statistical power to demonstrate that particular treatments will not work. But focusing on such restrictions will not even save much money in the aggregate, since rare diseases are, well, rare.
So the main result of this approach will be to reinforce managed care's reputation for heartlessness. In the case of Health Net, it seems particularly distinct from the preamble to the company's statement about business conduct and ethics, "Health Net, Inc. is dedicated to helping people be healthy, secure and comfortable. To succeed in our mission, we must maintain our customers' trust...."
Perhaps managed care would do better if it were lead by people who have some knowledge of the clinical context. In contrast, Mr. David Olson, the one Health Net official who has spoken publicly about this case, according to his his official biography seems to have no obvious direct health care experience. Mr. Olson is now responsible "for the company's investor relations function and internal and external communications, and also oversees government relations and charitable contributions." He previously served as "vice president, Investor and Public Relations, for Health Systems International, Inc. (HSI)," and " vice president, Corporate Communications for National Medical Enterprises, Inc. (NME), having joined NME in 1989 as director of Shareholder Communications." His only academic qualifications are "a BA in English from Washington and Lee University." Maybe he needs to talk to a doctor.
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