Science & Medicine

The Last MPNforum – October, 2020

Who can we trust?

As MPN patients, we are vulnerable.

Sometimes in pain or discomfort, always uncertain of future disease progression, we rely for relief on a medical establishment deeply indebted to a few large pharmaceutical companies for research funding. And since the approval of ruxolitinib nine years ago most of that funding has poured into JAK2 inhibitors that offer short term relief but no impact on the course of our MPN. Worse this class of drugs carries a heavy load of side effects subjecting us to a variety of serious health impacts.

We are the subjects of clinical trials of drugs that are heavily promoted… and  almost always fail.  We are provided powerful drugs by institutions and physicans who are often on the receiving end of substantial funding from corporations making and selling those drugs.  The FDA lacks the capacity — and sometimes the will — to rigorously supervise approval of experimental drugs.  Virtually all our nonprofit advocate supporters as well as the commercial MPN purveyors of information receive substantial funding from drug companies..

The result: Despite investment of hundreds of millions of dollars, participation by ten thousands of patients in clinical trial, and the best efforts of a small army of researchers, scientists and physicians, since 2011 only two drugs have been FDA approved for MPN treatment, both JAK inhibitors.  And the interferons and hydroxyurea — the workhorse drugs we actually rely on — are only available to us off-label. 

 Interferon, the only drug to have a proven track record of knocking back the mutant clone, while widely accepted in Europe, is available to us only because it’s approved for other diseases… and it is only reluctantly prescribed in the United States. Our workhorse, inexpensive drug, hyroxyurea, is also not FDA approved and frequently passed over in favor of the outrageously priced alternatives. Do read Hans’ story in this issue. His is a voice we can trust.

Who can we trust?

That’s the ultimate question  and  some surprising answers are addressed in Requiem for a Dream.  In Drs. Richard Silver (retired), Hans Hasselbalch, Ruben Mesa, Claire Harrison, Brady Stein and a handful of other specialists we have our Dr. Anthony Fauci.  (And if you have not yet read Julie Libon’s amazing article on Dr. Silver, here’s your chance.)

We each  need to find our own trusted physician.  (If you’re still searching, The List may help.)  And in the MPN Research Foundation, even as it reorganizes, we have a tradition of patient support, reliable management, scrupulous Board oversight and passionate employees. Watch their grants and program decisions over this next year to get a feel for its evolution.

With this issue, MPNforum is leaving the house. We talk about that a bit in Requiem.  Essentially, our work is done.  More than ever it is crucial that MPN patients and caregivers be educated and vigilant.  Share hard won knowledge.  And support one another.  Good luck.

-Zhenya

(Note: For answers to your MPN questions please visit our graphic Catalog .)

Requiem for a Dream

 When it’s time to move on. The Last MPNforum.

Hans Hasselbalch on inflammation  

The legendary Danish professor shares findings from new MPN clinical studies

Do you believe in MAGIC?

 The one site you need to check your MPN status instantly.

Barbara’s Story

Along with her friend and partner Robert Rosen, Barbara spearheaded the major MPN science of the past decade

Mary’s Story   

What happens when your MPN hits a speed bump in the road?

Jeremy’s Story  .

Fromthe MPN pioneer: What a long strange trip it has been

s.

Special expanded List of Patient Recommended Hematologists. 

The lost trove of 50+ patient recommendations surfaced in time for inclusion in this edition of the Internet’s Most Popular web page

 

 List of 359+ Patient-Recommended Hematologists from 32 Nations & 47 States

The MPNclinics – 302 answers to 141 Patient questions… with Index

Stem cell transplant — Six front-line stories and some vital links.

THE ARCHIVES:  A Visual Catalog of MPNforum Articles.

Subscribe to MPNforum

Contact: ourMPNforum@gmail.com

line short red red 50%

Donate thumbs upWhy Donate? Why Even Smaller?  Why now?   

MPNforum is produced by and for MPN patients. The publication is freely available to the Internet community without cost or paywall.  No one is compensated for creative or production work contributed to the Forum. No funds are accepted from institutions, drug companies, or corporate entities. 

Despite suspension of publication we continue to pay for materials, overhead, hosting, web services, Internet and  software services for our two websites: MPNforum, the MPN Quarterly Journal and the MPN MAGIC Risk Calculator.  Keeping http://www.mpnforum.com on-line and available to patients and caregivers, reseachers,  and physicians requires maintenance and expense.  Please consider contributing a small donation, with a maxium of $5/month.

The New Smallest Donation Program. Thank you for your support.

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

© MPNforum, LLC , MPNforum.com, and the MPNforum Quarterly Journal 2020. MPNforum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. Reproduction is permitted provided full and clear credit is given to authors and MPNforum.com with appropriate and specific direction to the original content.

Comments on: "The Last MPNforum – October, 2020" (2)

  1. Ahhhh Zhenya Senyak..we will most certainly miss you and your amazing and intelligent reporting, your independent thoughts, rants, praise, guidance. All selflessly done over many years and no doubt extremely taxing to pull together, as much as you loved doing it. How very hard for you to “hang up your boots” I’m sure you will miss it as much as the thousands of readers will miss it and you…..
    The end of an era Zhen and the beginning of something wonderful for you…precious time to do everything you want to do, or, just rest… We all sincerely hope you’ll always pitch in online still, you’re the backbone of our MPN Group, the reason it all ticks over and I for one, alongside no doubt, thousands of members, want to thank you. Thank you Zhenya. My husband Mike and I wish you contentment in whatever it is that will fill your time.. Please please please don’t be a stranger….🙏♥️🙏

  2. Dr. Joseph Moore in Durham and Raleigh NC has retired. He used to be my doctor at Duke Raleigh, but is no longer seeing patients.

Leave a Reply to Kay Springs Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: