International MPN News, Science & Opinion

forumsphere-mod-2

Good morning…

Here is your password protected advance subscriber copy of MPNforum:

  https://mpnforum.com/september-october-2013/

   The password is   Batman

 Drug pricing – On Money and Attitudes

 Several nonprofit foundations – notably LLS and NORD — and an international group of hematologists, patients, physicians and patient advocates are resisting excessively high blood cancer drug prices. 

 To honor those of us who have fallen and those who are suffering from advanced stages of MPNs, MPNforum has joined in that struggle.  Have no doubt. Achieving cost effective, rationale pricing of these drugs will take a battle against enormous odds against profiteering drug companies with great resources, influence, and political leverage.

 These giant corporations also have marketing capabilities that are deployed in public relations and advertising programs designed to create brand loyalty and influence medical and consumer attitudes in their favor. There is a danger in this for MPN patients.

 These drugs are not consumer products. Even some approved by the FDA and EHA, considered effective within limited ranges and safe for human use, are experimental as we simply do not know the full mechanism of their actions.  It is an evolving and brave science that promises much and will surely produce augmented or replacement drugs in the near future.

 Our choice of medication, our physician’s choice of prescription, must be independent of financial consideration, of PR programs and subtle attitude manipulation.

 Incyte Corporation is not a drug giant. It partners in drug development, marketing and distribution with true drug giants. Incyte’s marketing and public relations people have shown remarkable discipline, intelligence and creativity in the Jakafi roll-out. We have met with them, worked with them, like them personally and have come to respect their forthright approach to communications.  For those reasons, Incyte’s activities exploiting MPN Awareness Month and the corporation’s response to a patient petition to lower the price of Jakafi is deeply disturbing and leads us to question the Incyte corporate culture. You can read about it in the lead article, “Incyte awareness…” and “Incyte’s response to our Open Letter.”

 The Fatigue Project

 In this issue we report on the very significant progress made by Dr. Ruben Mesa and his Mayo Clinic team in securing financing for The Fatigue Project designed to find successful interventions for MPN Related Fatigue (MRF).  The full, formal pre-clinical trial research phase will likely launch within the month.  If you have not already registered with the Fatigue Project you can participate by sending an e-mail to MRFproject@gmail.com, and simply type Fatigue in the subject area.  (Your e-mail will be added to the research cohort. The system has no automatic confirmation (sorry) but your e-mail is both entered and routed to the project coordinator to be logged.)

 And of course there’s news in TSR, the List and other good stuff.

 Enjoy the issue. As ever, this advance version of MPNforum is still in edit and proof mode and is likely to contain a few typos, etc..  Your comments and corrections in advance of publication tomorrow would be greatly appreciated.

   Cheers, be well,

      Zhen

zhenyasenyak@gmail.com

 

Comments on: "Advance Issue: September-October" (1)

  1. The thought, research and time you put into the Forum is much appreciated.

Leave a 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 )

Twitter picture

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

Facebook photo

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

Google+ photo

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

Connecting to %s

%d bloggers like this: