Continue reading Looking for the Cure.
February 2012 Archives : Myeloma Voices
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Continue reading Looking for the Cure.
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Continue reading Looking for the Cure.
The 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.
10 STEPS TO FINDING AND SUSTAINING A CURE
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!
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.
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.
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!
