UniCare officials, in three separate letters, wrote that the SCOT trial is not a covered benefit…. The insurance company considers the SCOT trial experimental, says it's not medically necessary, and maintains that it lacks evidence of effectiveness. The Colers received a denial letter from UniCare stating, in part, “The fact that a physician ordered it or that this treatment has been tried after others have failed does not make it medically necessary.” Tony Felts, a spokesman for UniCare, said health plans often contain exclusions for coverage pertaining to medical trials. “A lot of this is UniCare basically administering the rules based on our customer, in this case the Group Insurance Commission,” Felts said.
In a sad twist of fate, Coler's father had switched from Blue Cross Blue Shield to UniCare so the family could see doctors outside of network. He could have chosen from other providers, including Blue Cross Blue Shield, Cignet and Uniform Medical, which have provided coverage for the SCOT trial. When the Colers appealed Unicare's decision, the GIC sided with the insurer.
GIC Executive Director Dolores Mitchell wrote, in a Nov. 12 letter, “I regret that the appeals committee decision could not be more favorable to you and Ms. Coler, but the language provided on the SCOT trials Web site establishes that this trial is investigational and that the treatments provided are not standard medical treatment for systemic scleroderma.” Andrew Coler disagrees. “The SCOT study is the only proven, and most effective, treatment,” Coler said. “It's got a very good track record, and it's documented that people have made a full recovery.”
From a soulless, cost-benefit point of view, I don't know if the experimental treatment requested by 21 year-old Hannah Coler and her doctor is worth it. I'm not an ethicist or an insurance company. I am a parent, however, and if there were a $300,000 treatment that gave my daughter a chance at life, I'd want it. Cost-benefit analysis be damned.
As case of Hannah Coler demonstrates, rationing is alive and well and living in the private sector. It's even endorsed by our quasi-independent representatives at the GIC. Rationing health care is already part of the insurance game and the stakes are life and death.
You can donate to the Help Hannah Coler Medical Fund here.
Mark
NOTE: I mistakenly said the GIC offered insurance plans that would have covered Coler's condition. Others GIC plans may indeed cover her condition, but those I mentioned were evidently available to her father through UMass, but not as part of the GIC.
it’s depressing, but necessary. I look forward to the day when we have single payer and our necessary treatments are decided by doctors in consultation with their patients — not medical insurance companies.
The SCOT Trial treatments are not approved by the FDA. See below from the trial website:
SCOT is a clinical research study designed for people with severe forms of scleroderma. SCOT stands for Scleroderma: Cyclophosphamide Or Transplantation. The SCOT study will compare the potential benefits of stem cell transplant and high-dose monthly cyclophosphamide (Cytoxan) in the treatment of scleroderma.
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p>These 2 approaches are investigational which means that they are still being tested in research studies and are not approved by the U.S. Food and Drug Administration (FDA) for the treatment of scleroderma. If you decide to participate in SCOT, you will receive 1 of the following:
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p>Stem cell transplantation: Stem cells – immature cells that can develop into different blood cells – will be withdrawn from the participant’s bloodstream. High doses of drugs to suppress the immune system will be given, followed by reintroduction of the stem cells into the blood.
High-dose monthly Cytoxan: Participants will receive high doses of intravenous Cytoxan, a chemotherapy drug often used to treat cancer.
Individuals with severe scleroderma will be enrolled in North America and assigned to either group. The primary objective is to evaluate differences in the rates of death and significant organ damage between the two groups.
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p>Treatments associated with clinical trials are supposed to be covered by the researchers. Why is that not happening in this case?
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