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For the 97%…

 Zhenya Senyak

A young woman seated at my table at a recent medical conference, clearly upset, confided she had just been diagnosed with ET and her doctor recommended a stem cell transplant.   “Why,” I asked.

“He said it was the only cure for my disease.”

 Two elements of this true incident reflect the growing crisis in MPN care.

We were at a patient MPN conference with over 200 other MPN patients and an assembled international group of MPN specialists.  The woman’s story wasn’t that surprising since so many of us can share such stories…or much worse. 

    Her physician wasn’t at the conference. None, outside of the presenting luminaries, seemed to be.  Nor would any attend the medical and scientific conference to be held the next day.   More importantly, 99.9% of US MPN patients weren’t at that conference or the combined annual patient conferences.

            Daily engaged in our on-line patient e-mail groups and our Facebook pages, etc. we are insulated from the enormity of this crisis. And yet it is true.   If neither my newly diagnosed luncheon companion nor her doctor —  both educated and well-off – understood the realities of her disease nor her real therapeutic options, what about the poor and poorly educated?

            We don’t really know how many of us we are in our MPN community.  The Yale study commissioned by the MPN Research Foundation concluded we are 175,000. The Incyte marketing department concluded there were over over 100,000 of us with myelofibrosis alone…which would place our numbers at around 400,000.    And no one can count the undiagnosed, the misdiagnosed, the poor and uninsured, the elderly who can’t even present themselves for diagnosis, or those who have little Internet savvy or access..

            Whatever our real numbers are, the overwhelming majority of us know very little about our conditions and our treatment options.

            The total population of all patients attending all MPN patient education conferences in the United Statesis  is well under 1,000. The maximum number of MPN patients participating in the Internet patient support lists and Facebook sites is well under 5,000…and that  includes substantial numbers of English language subscribers outside theUS..

           At best  that works out to 3.5%.

            The ignorance of our myeloproliferative diseases even among those of us who have the clonal mutation and our primary care physicians is nearly total. The most optimistic estimates would place our informed MPN population at about 3 in 100. 

  97% of us are carrying a potentially fatal and certainly life-threatening mutation without adequate information or medical resources.

            The American model of MPN patient education conferences is an important resource to further the development of cutting edge drug research. Without their contributions — and those of the research foundations funding basic science — we wouldn’t likely have had the JAK2 discoveries or now be queuing up for Pegasys or Jakafi.

            The big MPN patient education conferences, supported in part by drug companies,  help support the centers doing clinical investigation of new drugs through publicity, direct fund-raising, and disseminating information about clinical trials and drug approvals.  For the tiny fraction of the MPN patient population that can participate – and afford the travel, registration fees, accommodations and all the rest – the experience is exhilarating and informative.  They and their families are opinion leaders and can help, in a limited way, to spread the word.

            These MPN patient education conferences – whether in New York, San Diego, Scottsdale, Florida or anyplace at all —  serve a niche purpose and a niche market:  drug companies, clinical centers, and affluent, educated MPN patients. It is essential work…but does nothing to abate  the crisis.

            How do we reach the 97%?

            As patients, as physicians treating MPN patients, we have to take to the streets, to our friends, our own doctors, clinics, hospitals, patient support groups,  our personal networks and aggressively search out the 97%.

            One of the most successful approaches has been taken by the Mayo  Clinic’s YouTube series featuring Ruben Mesa.  Graced with deep knowledge, an easy, conversational approach and movie star flair for the small tube, Mesa has undoubtedly reached more MPN patients than anyone else on the planet. Still, the numbers show how far we have yet to go.  As of December 8, 2011, his most popular MF video first posted two years ago reached only 11,339 viewers worldwide.

            Good as this effort is, we can’t leave this work to the Mayo Clinic, to Mesa and Tefferi alone.  The need is clearly there.  Example: MPNforum Magazine, started in June of this year, has already attracted 43,121 readers to its pages.   But don’t be deceived. That number represents only the page view of computer literate readers. Still, it is illustrative.  There is a need and desire  for more information.

            The London MPN Conference, Living with MPDs Patient  Forum — (and when will we all quit screwing around and switch to the World Health Organization’s MPN designation and stop confusing people?) —    points to a promising direction.

              Living with MPDs grew organically from small, local meetings.  “We have been running short evening forums for six years now, ‘says Claire Harrison,  “all over the UK. There is a clear appetite for these and we have an increasing audience both of returning patients and their families but also new faces. In most meetings a newly diagnosed patient has come and has always fed back how helpful they found the meeting and sense of community. Clearly people want to come and return repeatedly. We have never charged for these.”

            This last point is significant since the high cost of participating in American MPN patient events is a barrier to all but those who are financially well-off and able to get away from home and job for an extended overnight stay. Registration fees plus travel to remote locations, lodging and food easily tops $1000. In contrast, Living with MPDs was held at the Brunei Gallery at Russell Square in the heart of London.  And the entry fee was only 10 British pounds, about $15.

            While the presence of international hematological superstars was undoubtedly a draw  – Tony Green, Jean Jacques Kiladjian, Tiziano Barbui, Ruben Mesa and Claire Harrison to name just part of the line-up — direct participation with each other drew appreciative responses from patients.

            Alisia O’Sullivan, ET patient and a volunteer event coordinator agreed., “The organisers included a very moving and encouraging session, where three patients and one mother of an MPD teenager, (diagnosed at eight,) shared their personal experiences. Their stories were honest and challenging, demonstrating  that living with MPDs is not always easy. Hearing their testimonies and those of other patients later in the day there was a recurrent theme of needing the emotional support of people who can understand what you are going through…”

            That requirement for emotional support , something the 97% never get, was a note also sounded by Ruben Mesa, “He pointed out,” said Chris Harper, an SCT survivor familiar to many of us, “that fighting back is very important. Knowledge is power so learn as much as you can about your disease and developments. Community gives you strength, learning from and sharing with others.”

            To extend patient and physician awareness of MPNs, we don’t have to design a new Mars Rover.  We already have  organizations committed to education and research, like CR&T, Friends of ET, MPD Voice-UK,  and the MPN Research foundation whose newsletter and website is a  candle in the darkness of MPN ignorance.   Primarily, though, the responsibility is ours.

    We can organize small events in our cities  through our hematologists, clinics and teaching universities and participate in fund-raising activities. …Easiest of all is to forward links to stories about your illness  to friends and family and ask them to help spread the word.

     It really is up to us.  No one else is going to do it for us.
Contents: January 2012: (Click on RED link )

Articles:…Marty’s Stem Cell Transplant …..My Robert ….Sevy’s Ride … ..Manuela’s Journey……Drop the “D” …Crisis in MPN Care….Nearly Painless BMB….News Briefs .

Columns: …The Empowered Patient ….The Long and Winding Road…..:..Jeremy’s MPN Life :… Body-Mind-Spirit and Prayer ….
Arch’s Corner .

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© Zhenya Senyak and MPNforum.com, 2011. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Zhenya Senyak and MPNforum.com with appropriate and specific direction to the original content.