The extraordinary cost of MDS Drugs

[PJD]

Please forgive me in advance for posting somewhat prematurely. The results of my most recent BMB were "non-diagnostic" for MDS (or anything else at this point). But as those of you on this formum know, a bone marrow biopsy isn't quite as clear as a pregancy test (either you are or aren't). I'm told that bone marrow biopsy can confirm the existence of MDS, but can't necessarily rule it out.

My counts have been mildly low for 6 or 7 years. More than 1 hematologist has suggested that MDS could be "brewing". With that as a backdrop, I'm trying to plan ahead. I've done enough investigation to know that the drugs used most often to treat this disease are VERY expensive. I am retired (60 years old), on COBRA...but that will be running out in 5 months. I'm investigating individual insurance at Healthcare.gov. I've looked at the approved medication lists for the companies offering coverage in my state (Florida) and less than half of the drugs most commonly used for MDS are covered.

Based on my research, some of these medications can cost (retail) $8,000...$10,000 dollars a month or MORE. My question: How are you handling this. How much are you paying for things like Vidaza...Dacogen...Revlimid etc.? Thanks for any assistance. My prayers with all who now deal with this very difficult disease.

[Data]

PJD,
I can't help you on cost of medicines as I am retired Air Force and get care through the Veterans' Administration. I did notice you were from Florida. There is an Aplastic Anemia & Myelodysplastic International Foundation (AA&MDSIF) conference next month on the 14th. I went to last year's conference and it was very informative. You do have to register for it at:

https://friendraising.donorpro.com/c...s/137/register

Good luck

Data

[alyasa]

May you have good health.

I do not know about the US, but I do know that Dr Reddy's in India is now making a generic Vidaza. The cost may be significantly lower than Celgene's.

[vickij]

I was on revlimid for several months and am now taking jadenu , both are very expensive but with the help of my Dr I get them at no cost through the drug company. All I had to do was fill out a form for financial assistance.

[PJD]

Thanks for the information. I'll continue to research and check back here for any additional input.