Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Mon Oct 19, 2015, 06:16 PM
PJD PJD is offline
Member
 
Join Date: Oct 2015
Location: Florida
Posts: 2
The extraordinary cost of MDS Drugs

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.
Reply With Quote
  #2  
Old Mon Oct 19, 2015, 08:26 PM
Data Data is offline
Member
 
Join Date: Sep 2014
Location: Florida
Posts: 245
AA&MDSIF Conference

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
__________________
Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
Reply With Quote
  #3  
Old Mon Oct 26, 2015, 10:47 AM
alyasa alyasa is offline
Member
 
Join Date: Jul 2014
Location: Polokwane, South Africa
Posts: 19
Generics seems to be on their way - but not sure of pricing

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.
__________________
Alyasa, father aged 72, dx July 2014 RAEB-2, (10.5% blasts) on Vidaza, low WBC (<1)
Reply With Quote
  #4  
Old Tue Oct 27, 2015, 09:41 AM
vickij vickij is offline
Member
 
Join Date: Apr 2013
Location: Connersville, Indiana
Posts: 117
PJD

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.
__________________
62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
Reply With Quote
  #5  
Old Sun Nov 1, 2015, 10:32 AM
PJD PJD is offline
Member
 
Join Date: Oct 2015
Location: Florida
Posts: 2
Thanks for the information. I'll continue to research and check back here for any additional input.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
MDS - VA assigns diagnostic code 7725 Tommy Daniels MDS 4 Sun Jan 22, 2017 03:51 PM
Drugs that perhaps will be approved for MDS Birgitta-A Drugs and Drug Treatments 0 Thu Feb 7, 2013 05:56 AM
New Tool: MDS Classification Marrowforums Site Announcements 7 Tue Jan 4, 2011 05:12 AM


All times are GMT -4. The time now is 10:52 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org