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February 2012 Archives : Myeloma Voices

Looking for the Cure

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Today is #RareDisease day! Take action with @RareDiseases: t.co/EgOBYlUh

Looking for the Cure

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We are looking for #myeloma patients to complete a survey. If you have not yet done so, please visit t.co/AKdVHpBQ

Looking for the Cure

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The IMF needs myeloma patients to participate in an online survey. Please help spread the word! t.co/bVWPO79G
bdurieblogpicture.jpgThe United States is running out of Methotrexate®, which is part of a drug cocktail that cures acute lymphatic leukemia in children. Why? Because there is not enough profit in manufacturing and distributing this drug and many other drugs for cancer and other diseases.  Clearly the profit motive has trumped the social and humanitarian necessity of healthcare.  And the amazing thing is that being healthy is cheaper!  But it is only cheaper in an integrated system that includes prevention, early intervention, and carefully crafted programs for the very ill.

So what does this mean for finding a cure for myeloma?  We need a new model, and the model must consider current economic constraints. In 1777, the Scottish economist and moral philosopher, Adam Smith, triggered our faith in the natural checks and balances of the free market system, but it appears that 235 years later, new approaches are needed.


1.       To find a cure, we must truly look for approaches that have a dramatic impact- do not just move the ball a little bit forward.

2.       This requires considering the unusual, the unexpected- the "Black Swan" or "Rainbow Toad" approach.  We must be open to and foster creative thinking.

3.       Collaboration, not competition, is key. This is the central aspect of the IMF's International Myeloma Working Group (IMWG). We hold annual brainstorming meetings (summits), during which we prioritize the best ideas for action steps. Small teams form to get projects rolling.  Multiple projects are central to the goal of leaving no stone unturned.

4.       Funding must be increased. The IMF has been blessed with many generous donors.  To ensure that these innovative projects move forward rapidly, we will need to inspire like-minded individuals to increase their giving.

5.       The IMF limits overhead costs and protects both patient privacy and intellectual property rights. 

6.       The IMF carefully considers the long-term financial implications of new treatments- for example, the potential for shared royalties.

7.       If an FDA-approved generic drug (like Methotrexate) can do the job, we must be prepared for that and come up with creative solutions with shared responsibility and reimbursement.

8.       If $100 million or more is required to make a new drug, let's plan ahead to achieve outcomes that are fair for all in the short term and long term. This is definitely the hardest part: to sustain investment and ultimately keep costs down.

9.       New drug approval is key. An open dialogue with the FDA can enhance approval of drugs that we need right now to keep patients alive as well as drugs that can achieve a paradigm shift in outcomes.

10.   We must bring the "health" and "caring" back into healthcare and work together to achieve it!

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Last year, the IMF experienced a first at the Boca Raton Patient & Family Seminar. Part of the way through the Friday night dinner, Bob and Cindy Feltzin - longtime supporters of the IMF and leaders in the South Florida community - challenged the people in the audience to raise $10,000 toward myeloma research, which the Feltzin family would match with an additional $10,000. By the end of the night, more than 50 families had pledged a total of $40,000 for myeloma research. It was a once-in-a-lifetime experience, or so we thought.

Last April, Bob Feltzin lost his courageous battle against multiple myeloma. Going back to Boca Raton this year was a decision made in part because of the Feltzin family's strong connection to the local myeloma community. The weekend had been sold out for over a month, and our team arrived at the hotel prepared for the busy weekend ahead.

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We invited Cindy Feltzin and her family to join us during the Friday night dinner, to honor their commitment and accomplishments, and to present Cindy with the first annual Bob Feltzin Award for Outstanding Service to the myeloma community. When Susie Novis announced that the Feltzin family had once again committed $10,000, and that we had already received an additional $11,000 in support for myeloma research, the crowd responded again in kind. We received almost $54,000 in support for myeloma research, exceeding last year's grand total by nearly $14,000!

Cindy came forward to accept the award, and against a backdrop of photographs supplied by her children, gave an elegant reprise of Bob's always-upbeat life with myeloma, and joint work with Cindy to educate and help the myeloma community in every way possible.

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It was unplanned; it was emotional; it was powerful. Brian and Stephanie Feltzin followed their mother with equal elegance and emotional impact. A drained and exhausted family joined at the end to celebrate a new way forward. There WILL be a cure and we will work toward it together!

Saturday at the Patient & Family Seminar was a great day with a huge turnout. We will definitely need a bigger room next year to fit everybody in! Dr. Asher Chanan Khan led off, followed by Dr. Ken Anderson, who gave a wonderful overview of myeloma research and the status of new drug development. After a flood of questions, Dr. Anderson had to rush off to join the Kraft family in Indianapolis for the Superbowl. Ken holds the Kraft Chair at Harvard and the Patriots owner was obviously quite keen to see if his team would win the Superbowl!

Dr. Shaji Kumar from the Mayo Clinic and Dr. Bart Barlogie from the Myeloma Institute of Research Therapy followed with stellar presentations! Bart answered questions ranging from whether or not myeloma is currently being cured, to the value of Gene Expression Profiling (GEP). All the while patients were highly engaged with great questions. After lunch, I summarized the approach to bone disease, and Dr. Kumar joined me in the main ballroom for a general question and answer session while Susie ran the Caregivers breakout session in a separate room.

By the end of Saturday's sessions, we were all truly exhausted, but filled with an unparalleled sense of accomplishment. We met so many new people, caught up with some familiar faces, and left Boca Raton satisfied and with great hope for the future of myeloma research.



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