International MPN News, Science & Opinion

Crisis in MPN Care –and what You can do about it.

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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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...Join Your MPN friends at the Forum

(If you prefer hard copy, there is a PRINT/PDF option at the end of each article.)

Raise your voice in the Forum, COMMENTS box after each article.
 
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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.

 

Comments on: "Crisis in MPN Care –and what You can do about it." (8)

  1. These are the rumblings of an MPN patient movement, one that is universal, involves us all in an active way. We need an international MPN patient union, where the pooled energy, knowledge and resources of hundreds of thousands of us will make a real difference in the world. We need to keep hammering at this until those of us who can make it happen fully emerge. We need outreach and we need money. I’m glad to read Maureen’s comment and her donations to the MPN Research Foundation. They are good people who have invested heavily in basic science and work hard to find and fund scientists working in our areas. Our MPN patient union can pour funds into their coffers, build the education infrastructure needed to get patients, caregivers, and physicians up to speed on our diseases.

    The three American Lists may attract loyal followings, etc. but together they are not even 3 or 4% of the known MPN populations let alone all the misdiagnosed and undiagnosed people badly in need of the basic information we already have here. These lists succeed in providing support services to a select group and have undoubtedly helped save lives, relieve pain and stress, and build enduring personal networks The next step is to leverage all our combined resources to in an outreach program to the entire global MPN community. We can do it together.

  2. Spreading the word! Reaching out! It is what we must do. Someone helped us now reach out to others.

  3. Hello Fellow MPD/MPN people. My experience on the LLS forum has been a life saver for me. Being diagnosed in 07, at 55, and never been ill before, was a daunting and frightening experience. I had found myself with no health insurance for the first time in 40 years, I can not imagine not having a PC to learn and chat with others about what was happening to me. It took me over 8 months to get any Onc/Hem to see me with no insurance and no money tree in the back yard. And over a year to get the Mayo to give me a discount rate so I could see Dr. Camoriano. Which by the way he told me he would see me for nothing. It still was a $668 Mayo fee, airfare from Oregon to Scottsdale, hotel, and expenses while there also. If I didn’t have friends who helped me fund this trip to a specialist I don’t know what would had become of me. Knowledge is power, and being our own advocates is even more important! We all need to ask the hard questions, and not be afraid to talk to our Dr.’s. Especially when some Dr.’s have an ego, and won’t consult with a specialist when they just don’t know something. I’m glad someone is finally addressing the issue for us who can’t afford to go to these conferences.
    Patti, 59, Et 07/ PV 2011

  4. Very informative. It is so very important to see one of the MPN experts as the majority of the local HEM’s know very little about MPN’s nor do they have the time to research for one patient. What I have learned on all of the Lists has been a lifesaver along with my trips to see Dr. Spivak.

  5. Great points, Zhen. Thank you.

    Some local efforts which have made a difference on the perimeters: Organizing and holding local support group meetings (something that MPN Foundation has sponsored and publishes on their site), leaving flyers in the offices of the hematology groups in your area (available from the Leukemia Lymphoma Society), take First Connection phonecalls from the newly diagnosed and those in crisis (volunteer to do this by calling your local Leukemia Lymphoma Society chapter), be on the Speakers List for Leukemia Lymphoma Society functions, Google to find fringe MPN groups on the Net and then join them in order to lend a hand.

    You will note that most all of these suggestions take very little physical stamina or time, so no matter how debilitated you may be these can still be accomplished. A side-benefit is that it will take you away from your own thoughts toward thinking about others. You will feel better!

    More suggestions?

  6. Wonderful and vital information. Knowledge is power – amen!

  7. Ann Christmas said:

    Very interesting contact you have sent through –
    I am an Australian, 69 yrs diagnosed with PV in Queensland only after I researched the cause of major DVT event on the Net myself. around 2002. This had temporarily blocked my portal vein and during treatment with warfarin I totally lost my superior mesenteric vein. HRT was blamed for it. Now on venesections and daily small aspirin dose. I am also a diabetic. There is little basic knowledge of these diseases on the GP level and not many haematologists who know it well. I try to keep myself educated through research on the net.

  8. Fabulous! Affordable, easily accessible, education is key. Bravo for your passion behind this.
    I lost my father to PV almost two years ago. We knew nothing. He knew nothing. His hematologist knew very little. His cardiac surgeon knew absolutely nothing when he went in for a bypass. How do we educate everyone? Your article should inspire us all.

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