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This is a difficult MPNforum issue, emotional and challenging.

https://mpnforum.com/march-2016/

I have to finally get it out of my computer and into the world but I know it still needs proof-reading and editng,  If you can help this afternoon, please send any comments/corrections to me: zhenyasenyak@gmail.com

The melanoma story that kicks off the issue was researched and written before news broke about pacritinib.  I left it in as the lead because of the brilliant scientific work Leonard Zon did uncovering the stem cell origins of  of cancer formation. It stands in sharp contrast to the rest of the issue.

The pacritinib affair – FDA suddenly putting a stop to the clinical trial and prohibiting further distribution of the CTI myelofibrosis drug – has had a devastating effect on Patients.

That makes it twice in two years that a Phase III MPN drug collapsed at the finish line. This time however, it was the Feds that did it…and by every indication through brutal over-reach.

Either way we the patients are left powerless, unconsulted about matters that directly affect our lives, and lost in a maze of clinical trial mumbo jumbo

This March Issue of MPNforum is given over to the Clinical Trial Lottery, the pacritinib affair, a view of MF patients abandoned without alternatives, and an overview of how messy the clinical trial system is and how we can avoid getting ensnared.

MPN Lives Matter,

Zhen

 

 

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