TennCare will pay for a woman with Nephrogenic Systemic Fibrosis (NSF) to undergo a treatment that might save her life. TennCare,  Tennesee’s Medicaid  managed care program, had refused to do so for two years because it said the treatment was experimental.  But a Judge in April said it must pay, because the treatment is medically necessary, and the insurer has indicated it won’t fight the decision.

Like all people with NSF,  Jeannie Deason was a kidney patient who developed the condition after she was exposed to gadolinium contrast dyes that are used in MRI procedures. Deason’s NSF has progressed to the point where her legs and right arm have become frozen in a bent position. During the fight with TennCare her condition deteriorated to the point where she needs someone to stay with her 24 hours a day. Now she spends her days in bed, limbs throbbing, only getting up when her parents help her go to the bathroom. She even had to miss her daughter’s graduation.

The treatment that Deason hopes will restore some normalcy to her life is called extracorporeal photopheresis. It 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, an assistant professor of dermatology at Vanderbilt University who has treated four patients in this way, told the Tennessean he has seen dramatic results. One patient who was initially unable to close her hand could use a pen to sign documents after three months of treatment. Another patient had significant joint stiffness and difficulty walking. After about seven months, the patient was walking without a significant limp. In all, three of Zic’s patients improved and one died because of issues with dialysis treatment, not because the treatment was ineffective

There is currently no cure for NSF and no one understands its specific cause. The disorder is characterized by high blood pressure, burning, itching, swelling and hardening of the skin. Other symptoms include red or dark patches on the skin; pain deep in the hip bones or ribs and muscle weakness. NSF can progress to the point of causing severe stiffness in joints, and it can lead to death.

In 2007, the Food & Drug Administration (FDA) asked the manufacturers of gadolinium contrast dyes to add a black box warning to the product labels about its association with NSF. The FDA also warned that patients with kidney disease should avoid gadolinium contrast agents.