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Old Wed Nov 21, 2007, 12:12 AM
5qminus 5qminus is offline
Join Date: Nov 2007
Posts: 3

Hi, I'm new to this forum. I started taking Revlimid 1/2006. I"m curious if anyone knows where the patient that took revlimid for five years was being treated. Is anyone interested in petitioning for changes in insuranse coverage so that prescription meds. for treating diseases such as MDS be covered under major medical. I went broke paying 50% and now I am on SSDI. I'd be interested in helping organize a national effort to change how insurance co. work with the new cancer drugs.
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Old Wed Nov 21, 2007, 06:43 AM
Birgitta-A Birgitta-A is offline
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Revlimid for 5 years

Hi 5qminus,
Kirby Stone wrote this 09-27-2007:
Originally Posted by knstone View Post
At the AA/MDS conf in Las Vegas one male patient had been on Revlimid for 48 months without a transfusion, counts near normal. One patient in Arizona who was on the first Revlimid trials at the Univ of Arizona has been on Revlimid for at least 5 years. These are the longest responses I've heard of for patients on Revlimid.
Kind regards
68 yo, dx MDS intermidiate-1 May 2006, transfusion dependent, Desferal 4 days/month, Neupogen 2 injections/week, Prednisolone 2.5 mg/day. Asymptomatic.
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Old Thu Nov 22, 2007, 10:20 AM
knstone knstone is offline
Join Date: Aug 2006
Location: Cincinnati, OH
Posts: 118
Hi 5qminus

The man on Revlimid for 48 months(in Aug 07) was from Pittsburg; unfortunately, I don't have his name. He was not -5q, the same as myself, but both of us have responded well.

My insurance thru my former employer pays for the drug, some will not pay if one isn't -5q but others will.

A friend here in Cincinnati has had to change to Medicare part D as a result of his company dropping drug coverage for retirees. He said that Revlimid will be covered but at a fairly high cost. I think part D will pay 95% after one pays the first deductibles and works thru the "donut whole". At 5% my Revlimid would cost over $350/month.

Do you have insurance or are you on medicare?

I believe that the Doctor or cancer clinic can petition your insurance for coverage that might normally not be covered. It may take a few tries to make it work.

Hope this helps a little.
Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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Old Fri Nov 23, 2007, 11:29 PM
5qminus 5qminus is offline
Join Date: Nov 2007
Posts: 3
thanks for your reply. I have insurance. I'm too young for medicare, so now I am on medicaid. I had a 50% copay with my insurance.. Celgene's PAP helped me until I was given disability determination. It was costing me 6,000. a mo. initially. My insurance covered 50%, but when the med. costs 12,000 amo. it did't take long to go thru my savings. Iwas dx. in 04, so I was pretty desperate to try it. I'm hoping that insurance co. will consider covering the "new" cancer and marrow disorder drugs under major medical coverage, which would make them more affordable. I've had great result, transfusion free for almost two years. Thx
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