[Sunbunys]

Denied thalidomide compassionate-use access (Ontario)

by Sunbunys on Mon Jun 08, 2015 3:52 pm

We live in Ontario, Canada. We have just been told that my husband, who has multiple mye­lo­ma, has been denied compassionate use access to thalidomide.

We have not spoken to the doctor to find out why this has happened, but I have been told there are other ways we can avail ourselves of this potentially lifesaving drug.

Any assistance would be greatly appreciated!

[Nancy Shamanna]

Re: Denied thalidomide compassionate-use access (Ontario)

by Nancy Shamanna on Mon Jun 08, 2015 4:58 pm

Hi Sunbunys,

I think that thalidomide must not yet be on the list of drugs for Ontario that are provided for myeloma patients? I was also denied compassionate use to thalidomide back in 2010, on financial grounds. I think it costs about $30,000 per year, or more. Perhaps a reader from Ontario could provide more information about this too?

However, it was at that time that Revlimid was approved in Alberta, and I was able to use that drug. I was grateful to be using Revlimid instead of thalidomide, since the side effects of neuropathy are less.

Could you explain a little more about why your husband was prescribed thalidomide instead of one of the newer drugs available?

[Nipon Ginko]

Re: Denied thalidomide compassionate-use access (Ontario)

by Nipon Ginko on Fri Jun 12, 2015 11:31 pm

I've got a question here about thalidomide. It was originally used as an anti-nausea drug for pregnant women and then banned after they found out it was causing birth defects! SO in that case, the expense could not have been very high, otherwise they would have used something else. The development costs have been long paid for, SO how is it that now the drug now costs $30,000 per year? Are some people getting richer at the expense of the ill and dying?

[Nancy Shamanna]

Re: Denied thalidomide compassionate-use access (Ontario)

by Nancy Shamanna on Sat Jun 13, 2015 8:13 am

Hi Nipon,

I think you are right that thalidomide is not an expensive drug. it is available in Mexico and India for much less than $30K a year, for example. But I think that the costs are factored into the way it is distributed as a 'special access' drug. Because it is teratogenic, it is controlled tightly in Canada. So is Revlimid controlled, by special distribution, in both of our countries. No one wants these drugs to be causing birth defects.

Hope that helps in understanding the high cost of thalidomide. I was surprised to find that out at the time, but now realize that most myeloma drugs and treatments cost much more than that.