Your pre-publication copy is now available.
Just a couple of years ago Sanofi’s fedratinib – a Jakafi competitor — was dead in the water. Its Phase 3 clinical trial was suspended by the FDA. The trial was aborted by its sponsor, Sanofi.
This year, in the hands of Celgene, the drug was revived as inrebic and approved by the FDA. Last month Bristol-Myers Squibb acquired Celgene for $74 Billion.
It’s part of the MPN Gold Rush that transformed our rare disease into rock star status with Incyte’s Jakafi rocketing to $1.4 billion in MF annual sales. And it complicates our MPN lives.
It all started with a tube of skin cream…
That’s the lead story of the January 2020 MPNforum…PLUS Good news as gene editing closes in on blood cancers. AND a fresh update of the List of Patient-recommended Hematologists.
Your MPNforum pre-publication copy is available now at https://mpnforum.com/january-2020/
You have the weekend to look it over before publication so do please shoot any corrections or comments to us: ourMPNforum@gmail.com
Comments on: "The MPN Gold Rush" (3)
Great article Zhen. Bravo for revealing to our clouded eye, the pitfalls of big pharma marketing and research! Thank you for stating what I truly believe to be the balanced truth.
Not sure why I am getting advance copy, though I enjoyed reading your editorial. Two suggestions:
(1) Your thesis seems to be a call for more genetic research that would lead to cure vs. pharmaceutical development that manage disease. It would be clearer if you stated that up front instead of the long story of why you skipped ASH.
(2) Some of your data is not referenced. Where did you learn, for ex, how much Incyte has made from Jakafi? Maybe this has been established in previous reportage? Text links would be helpful.
FWIW, I offer support strictly to fellow ET patients through a grassroots blog and FB page. The biggest problem I see is the utter lack of info patients receive at diagnosis from local hemos. ASH might have turned MPNs into rock star diseases, but the average ET patient diagnosed by a local hematology oncologist gets little info about their disease or is utterly overwhelmed and frightened by what they do get. Many read that CBD oil will cure them (and the MPN Foundation got hoaxed last year by a woman who claimed she was keeping platelets controlled with CBD. Turns out she was selling it. I alerted the foundation to this. All they had to do was google her name like I did. It struck me as quite a gaffe given the foundation’s reputation.)
The second problem I see is that no one–not hemos or education orgs–really addresses the anxiety and mental health aspects of these diseases, anxiety exacerbated by lack of good info at diagnosis and by chemo itself.
No criticisms implied toward you, just passing on what I see in my small attempt to help others as a patient myself trying to wade through hype and confusion.
Thanks for the comment, Jean. Having grown up in a much more leisurely literary era, I usually take a slow walk around my thesis and jump in at whatever entry point appeals at the time of writing. Sorry if I misled you.
My absence from ASH was just a literary device to develop the central theme and compare the old MPN world with the new. The MPN world has grown too commercial as large pharmas pile on to get a piece of Incyte’s action. That was illustrated by the explosion of MPN research witnessed by the vast expansion of MPN posters at ASH, the Gold Rush graphic and the many references to Big Pharma investment and the Sanofi fedratinib story ending in Celgene’s acquisition by BMS for $74 billion.
I’ve long been concerned that this search for a lookalike JAK2 inhibitor has sucked up billions of dollars and countless hours to research time that could more profitably been spent in research into fundamental molecular biology focused on the underlying causes of MPNs; And a corollary concern is the limitations and risks of Jakafi are somewhat overlooked in the course of aggressive marketing and widespread payouts to docs, medical institutions, and nonprofits.
I strongly agree with your main point. We don’t do enough to address the widespread anxiety and emotional distress felt by many MPN patients who imperfectly understand their clinical realities and associated therapeutic options. The reasons for this ignorance, I think, are twofold: (1) The MPNs are still a relatively rare disease and many hematologists – and oncologists – are just not familiar enough with the condition…and some who are don’t believe it necessary to fully engage patients in their therapeutic options. And (2) in the beginning patients feel they don’t know enough to press their physician for more information. As they gain experience and contact with patient groups I’ve seen many become more assertive. Social media, informative articles (see the MPNforum archives) and one on one patient support like that offered by Chris Harper, featured in the article can all help patients gain control of their own MPN journey
Good for you and your ET patient support efforts. If you care to supply the URL for your blog we would be happy to direct patients to have a look. And it’s easy enough for anyone to check the Incyte revenue figures. Just Google it. We do provide links to background materials and journal articles.