Science & Medicine

 

 

 

December, 2018 — The Big Issue — Is Now Available

www.mpnforum.com

Featuring:  Conflict of Interest, PV and Jakafi — Hype or Hope?

ASH Wrap-up — Atlas of MPN Mutations — More Power to SSTT

Writings by:  Mary Cotter, Barbara Ann Kurtz, Jeremy Smith

Bonnie Evans,  and The Last ASH…ever

PLUS an expanded List of Patient-Recommended Hematologists

 
Let me tell you about my doctor.
And then how about you tell me about yours.

Josh Gettinger is a family doctor at my local medical clinic. He’s the only guy I’ve seen for my MF in the past eight years. He reviews my CBC quarterly, keeps up with MPN research reports, consults with specialists as needed and calls me when he has concerns. He’s smart, caring and great. I just added him to the List of Hematologists… even though he isn’t one. He’s just too good not to share.

So how about yours? Fewer than one third of us see MPN specialists for our medical care. And many of the hematologists we do see know little about MPNs. Which is why the List of Patient Recommended Hematologists is such a gift to the community. There are the women and men who care about us. The doctors worth sharing. Get the word out. The List is probably the most popular page in the MPN world.

Doesn’t your doc belong up there?

If you’ve got a good doc, share the good news. It takes just a minute: Go here: https://mpnforum.com/good-doc/

 

 

 

 

It’s worth a second try.

Many of you responded to our Conflict of Interest survey. Most of you didn’t.  Please take a second look, it’s more important than you might think.

There have been much publicized reports of medical corruption and conflicts of interest between physicians and drug companies. For a Conflicts of Interest (COI) story appearing next month,  MPNforum convened a panel of MPN specialists.  Docs you know. We’ll share their thoughts

.For us as patients, the subject hits close to home. C0I is responsible for billions in drug costs. COI impacts MPN treatment decisions. COI affects our relationship with our physicians.

We created a  six question survey https://goo.gl/forms/rmTDTl5JPH25sCoy1. Please do click on it and take the 30 seconds to answer. We have the docs responses. We know the drug company responses. Now let’s include our own perceptions in the December article.

You can also Click here:  https://goo.gl/forms/rmTDTl5JPH25sCoy1

.       …. and Happy Thanksgiving!

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Corrupted by the Internet

 

The Internet can make freeloaders of us all.

MPN survival is not a spectator sport.  On this journey, you can’t expect to sit back, ask a question or two and then just lurk in the shadows observing.   It’s also not a free lunch. Somebody pays.

Blame it on the Internet. Gmail, Facebook, Google…all free. Except they make hundreds of millions of dollars by tracking our activities and selling the data to advertisers.  That free ride costs us our privacy…plus the hidden price increase we pay for stuff we buy since those advertising costs have to get covered.

And the Drug companies. They donate funds, support events, offer free help on-line. It’s all a PR/marketing trick. Did you know our friends at Incyte raked in 1.3 BILLION dollars on Jakafi in 2017 alone. $1,300,000,000

And then there’s that other world.  Our world. MPNforum. We’re the MPN community and we’re in this together. No advertising. No grants. No subscription fees. Just us

But some of us are confused. This is the Internet, right, What’s with asking for money?

Here’s why. For the privilege of covering the ASH San Diego conference, an exhausting affair for even the most hardy of us, we need $2487. To cover direct out of pocket expenses. No charge for interviews, writing, production and printing the magazine. 12,000 of us read each issue. If we each coughed up a 25 cents —  15 minutes on the local parking meter — we would have the trip covered with change to spare.

  Not everybody can contribute funds. That’s why we set up the Small Donation Program. Anything                                                           from $5 on up to $100. We put a lid on maximum financial contributions because none of us should have an outsized influence on content based on big bucks..

  And that’s the final point. There’s only one non-commercial, on-line, all volunteer medium serving the MPN community. It’s managed by professional editorial and science writers and serves up the creative contributions of over 200 patients, caregivers, physicians and scientists. You can see our track record in the Graphic Catalog of Articles.. More breaking news, more investigative journalism, more pure science and medicine reporting than the combined MPN commercial media supported by Big Pharma advertising.  When MPNforum reports a story it has been fact checked and validated at the source.

So when we ask for carfare to cover a meeting, we’re not doing it lightly. We doing it for you. And me. And all of us. There are real world costs to cover, real results to report.  Thank you!

The Small Donation Program — Any amount from $5 but nothing over $100.

MPNforum, PO Box 17142, Asheville, NC 28816
Donations to MPNforum are not tax-deductible

 


 

Truthfully, I hate air travel. Too many people in close quarters, long lines at airports, bad air, dicey food. Worse, I have to board my dog Dave and turn my parrot Bozo over to a local vet for oversight while I’m gone.

But the American Society of Hematology (ASH) has never had its annual meeting in my hometown, Asheville North Carolina. And since all the important news is released at this World Series of hematology, all the MPN specialists and researchers gather, there’s not much choice. It’s travel time.

Over the years we’ve brought it all back to the MPNforum, the crowds, the news, the insights. This year ASH is in San Diego. It’s where we can renew contact with old friends and talk about what’s going on in their labs, their clinical trials. Get a deeper understanding of the current status of stalled meds and the underlying realities of future MPN drugs, procedures, immunotherapy, gene therapy. And all the rest.

The tab is $2,228. Minimum. Those of you who know MPNforum know we have no reserve funds. No grants, no ad income, no subscription revenue. MPNforum has always been funded as a bare bones community effort. Covering costs together.

So do chip in if you can. It’s the price of truly independent reporting by a patient/caregiver co-operative. The same Small Donation Program rules we always followed apply: $5 minimum but nothing over $100, please.

Thank you. (And yes, I’ll make it up to Dave and Bozo when I get back.).

The Small Donation Program — Any amount from $5 but nothing over $100.

MPNforum, PO Box 17142, Asheville, NC 28816
Donations to MPNforum are not tax-deductible

 

 

 

 

 

Here is your Advance Copy of MPNforum.  (The “Return to home” link won’t work until after 5 PM)

 

https://mpnforum.com/special-issue-bringing-sct-out-of-the-closet/

 

 

 

 

STEP UP AND BE COUNTED

https://goo.gl/forms/NQxX53cXxqV3SRTA2

Where do we get our MPN care? What role do specialists play? How is our therapy impacted? Answer the quick two minute MPN Patient Care Survey and help clarify the picture.

The Survey ends this Wednesday at 5 PM so act now. And thank you, (No identifying data collected.)

https://goo.gl/forms/NQxX53cXxqV3SRTA2

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