Luspatercept

[Beth Stanaland]

Is anyone on Luspatercept? Side effects? Can you share your history leading up to starting Luspatercept? Thx

[Newton Munson]

I became aware of Luspatercept at the July 21 MDS Foundation meeting in Boston. This drug appears to address my greatest MDS challenge which is anemia with a continuously shrinking transfusion cycle.
However, my understanding is that Luspatercept has been in clinical trials for some time, but those trials are now closed. The latest word I have is that Celgene is completing the process of getting the drug approved which may happen by “early” 2019.
I asked if the new “Right to Access” law passed recently would eliminate that gap. I was told that it gives the patient “right to access” an experimental treatment but does not mandate the pharma company to allow its use. Also the law will be implemented state by state and therefore it may work differently in different states. Celgene is an American company so that may work in our favor.
If anyone has any more encouraging news about gaining access to Luspatercept I would be VERY interesting in hearing about that.

-Newt-

[Allan Romriell]

Thanks for the update Newt. If it has concluded trials and is working on being approved that is good news for all of us with primarily anemia. I understand it was targeted for those with the RS type MDS as well which is what I have. I am not in need of transfusions now but I know the day will come, as MDS will not go away but just get worse. I hope they do have it out next year.

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