Community Chat

[makeup addict]

My best friend has a rare disease called sarcoidosis. It's in her nervous system and a recent MRI shows that it's now in her spine. She is on her husband's insurance, which pays 80%. She has been taking steriods for 15 years, high dose. The steriods are no longer treating the disease so they are now using an IV treatment with a drug called Remicade. It's working. She feels better and the doctors hope to ween her off the steriods. Problem: It costs $10,000 a treatment and she is suppose to go every six weeks. Insurance has agreed to pay 9,000, but she will be responsible for 1,000 every six weeks. They can't afford that. She has called the makers of the drug, but they said since it's only FDA approved for Crohn's Disease, they can't help her with the cost.

Are there any programs that could help her? She and her husband both work, but she has been on short term disability for the last two months since it went to her spine. She is considering applying for federal disability, but either way she can't afford the treatments.

Any information you may have will be greatly appreciated.

Thank you