NSF-Talk.com

Archive for July, 2008

TennCare, Tennesee’s Medicaid managed care plan for uninsured kids and the disabled, will pay for a woman with Nephrogenic Systemic Fibrosis (NSF) to undergo photopheresis. For two years, TennCare had refused to cover the treatments for Jeanie Deason, saying it was experimental.

Extracorporeal photopheresis involves removing blood from a patient’s body, exposing it to ultraviolet light and then re-infusing the blood into the body. It’s believed that the treated blood alters the body’s immune system so it can better fight the disease. It can cost around $8000 for one treatment.

Deason’s physician, Dr. John Zic, has treated four patients with photopheresis. In all, three of Zic’s patients improved and one died because of issues with dialysis treatment, not because the treatment was ineffective.

But TennCare steadfastly refused to pay for the photopheresis for Deason. So for the past two years, she has been fighting the insurer. Finally, in April a judge ordered TennCare to cover the treatment, because it is medically necessary. Now it appears TennCare won’t appeal the judge’s decision.

In the two year’s she has been fighting TennCare, Deason’s condition has deteriorated dramatically. Her legs and right arm have become frozen in a bent position, and she needs someone with her around the clock. Now she spends her days in bed in constant pain. All of which might have been avoided if TennCare had shown a little more compassion, and paid for her photopheresis two years ago.

Deason is hoping that photopheresis will eventually allow her to walk again. But she also knows her chances would have been better if she had been able to start treatment before her NSF progressed to the point that it has.