Patient with Rare Disease Finds Lifesaving Treatment: HMO unwilling to pay

The story in The Los Angeles Times,Patient is out of network, out of luck, describes a patient, Jalal Afshar, 58, with a rare disease who, despite Kaiser Permanente’s denial to pay for treatment, found the appropriate treatment for himself and is now cured. He is suing Kaiser for 2 million, the sum total of his medical treatment that saved his life.

If this isn’t the most perfect example of a take-charge patient, I don’t know what is. Jalal’s doctors at Kaiser admitted to never having treated a case of Castelman’s Diseaseand offered hospice to him. Jalal did his own research to find a specialist in the treatment of Castelman’s disease at the University of Arkansas for Medical Sciences in Little Rock. Kaiser authorized the referral to see Dr. Fritz van Rhee for preliminary tests but ultimately denied payment for treatment. If Kaiser approved the referral to see the specialist, why then did they disallow the treatment?

Perhaps Kaiser Permanente’s pre-certification process rendered the proposed treatment as medically unnecessary, not appropriate, or not at the level of care or effectiveness in keeping with Kaiser’s standards.

Boy, were they wrong.

Why would Kaiser deny treatment that ultimately saved Afshar?


If their review of the proposed treatment for Castleman’s disease was considered too much of a financial risk, they probably declined payment on that basis.

With an HMO like Kaiser, treating patients like Afshar boils down to making money and saving it. According to The New York Times article, The Face of Future Health Care George C. Halvorson said, “We think the future of health care is going to be rationing or re-engineering,”

And rationing is right. Afshar’s case is the perfect example of rationing of care and right in keeping with the mission of HMOs.

The journal, Radiology, (University of California, Irvine Medical Center, CA) reported on a case where a woman’s appendix ruptured while she had to wait 8 days for diagnostic tests for abdominal pain. The court decided in favor of the HMO, stating that “rationing health care is intrinsic to the design and mission of HMOs.” See article here

Jalal Afshar took it upon himself to research effective treatment for his disease, something Kaiser Permanente should have been willing to do or at least authorize. After all, Kaiser is the only HMO to earn a four star rating for overall quality of care in theHealthCare Quality Report Card from the California Office of the Patient Advocate.

People have asked me, “What is the value of being a take-charge patient if you’re a patient at Kaiser, which has some of the best integrated data systems in the country?” I’ve told them that being a member of Kaiser does not obliterate the necessity for becoming an active participant in one’s health care. Successful, quality outcome of care isn’t just about closed, integrated systems. It involves a number of things, one of them being an empowered and engaged patient who is willing to do his or her own research and pursue treatment options when necessary.

An HMO like Kaiser wouldn’t have helped me one bit when I received 10 misdiagnoses from 11 physicians of differing specialties for a severe, chronic pain condition that lasted 16 months. I didn’t give up. I kept pursuing answers even after several doctors suggested that I adjust to a life of chronic pain. I found my own diagnosis in The New York Times article, In Women, Hernias May Be Hidden Agony. The surgeon and hernia specialist (at a major Los Angeles teaching hospital) who was interviewed for The New York Times article, performed surgery on me to fix hernias with nerves passing through the holes.

I’ve been pain free for two years.

If patients think that closed, integrated systems like Kaiser Permanente, Cleveland Clinic, or Mayo Clinic, are going to solve all of their health care problems, they are sorely mistaken. Electronic Health Records are very successful in decreasing fragmented care, preventing certain types of medical errors and more. But patients still have to be engaged, empowered, and invested in their care. They have to be willing to do some of the work.

Just like Jalal Afshar. But patients like him are now being asked to shoulder the risk when HMOs are unwilling to assist.

I understand why HMOs like Kaiser are becoming popular and are encouraged by The Affordable Care Act (ACA.) The U.S. far outspends other countries on health care, dedicating more than 17 percent of its gross domestic product (GDP) to health care compared with 12 percent or less in all other countries. We have to do something about our country’s overspending on health care. But is rationing care to a 58-year-old male fair? Are HMOs the way we want to go?

I welcome your comments.

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