Is anybody taking care of someone who has myelofibrosis? How is everything going with this complicated disease?

This is very tough. My husband has recently been diagnosed with this. I understand it's quite rare. Every single week he has a blood test indicating that he needs a blood transfusion and goes to the hospital where he receives 2 units. Will feel okay for a couple of days and then start slipping again. We've been referred to a doctor at University of Alabama at Birmingham for a 2nd opinion and will be going there next week. The medicine our doctor at home prescribed, Jackifi, costs over $13,000 for a 60 day supply. Have insurance but with a 26% co-pay. After many, many phone calls I found an assistance program that will cover the co-pay. I am exhausted as I not only work full-time but have had to take total control of everything in our lives.

Does anyone know about this disease ? Do you have a relative a friend ?