I had already written part of today’s article. But after reading this comment from Nick in California, defending the MMRF, I decided to go in a different direction:
Hmm…not sure what to make of this, to be honest with you! 🙂
While the MMRF doesn’t necessarily agree with the approach that my oncologist takes, I have to say they’ve probably done more than anybody to raise awareness of this disease, fast-track drug approvals that have been hugely beneficial to us patients, and in general relentlessly push to inform and work towards a cure than any other organization.
They are widely considered the gold standard among non profits in the medical world. I know this because I have been engaged with several others on the vision side of things because of a condition that my daughter has, and they all recognize the MMRF as the model for moving things out of labs and into treatment.
Kathy and I have met several times. She is headstrong. She has an ego. In my mind, the first is important and the second is deserved, to some degree. When I was newly diagnosed, she spent 90 minutes talking with me about the disease. I spoke for another hour on two separate occasions with their chief medical officer, once to learn more about the disease and once to vet my decision to go to Arkansas for treatment.
When meeting with Kathy last, she walked me through detail about all of their spending, the clinical trials they are working on, the drugs that are in various stages at various companies.
Frankly, and I say this with respect, I think you may be trying to manufacture a story where there is none. They use the word “powerful” in their literature and this sets you off? Really? This is an orphan disease — we are lucky that somebody as motivated and headstrong as Kathy is around to drive attention. Attention is required, after all. She is an excellent spokesperson for the cause.
Just my $0.02 worth.
I’m glad Nick was so forthcoming. I want my readers to have opinions—and express them! And maybe I was a bit hard on the MMRF while making my point.
But by “defending” the MMRF, Nick missed that point. Like I wrote yesterday:
The point is: Why can’t the MMRF and IMF just get along?
My impression, based on years of interaction and exposure to both groups: The MMRF and IMF don’t like each other. They don’t communicate well, share information or work cooperatively—at least as far as I can tell.
And that’s too bad. Each specializes in different things. Aside from a culture of distrust between the founders of each group, the only reason the MMRF and IMF don’t work together is money. Competition for the almighty dollar.
Like two government agencies with overlapping interests, the MMRF and IMF compete for funding, wasting lots of money. Fund raising is expensive—and the pool of potential myeloma donors is finite.
So each group spends more and more to raise money from a stagnant—or because of the poor economy—shrinking pool of donors…
But the biggest issue? A growing dependency on drug company dollars. Let’s examine this tomorrow.
Before we take a look at how multiple myeloma non-profit’s increasing dependence on drug company dollars, I just want to finish-up addressing Nick’s point.
Nick can defend the MMRF’s co-founder, Kathi Giusti all he wants. But her self centered leadership style is one of the reasons the MMRF and IMF can’t seem to work together better.
Remember, my main point here was to suggest precious research dollars could be saved if the MMRF and IMF would merge or—at the very least—work together to avoid duplication and save administrative costs.
Now on to the biggest issue facing multiple non-profits and research: Dependency on drug company dollars.
I will keep this short and sweet. Both the MMRF and IMF learned very early it is more efficient to solicit large, corporate donations than it is to work with smaller individual donors. The obvious source—multiple myeloma related drug companies.
Both groups have forged positive, rewarding and profitable relationships with these companies. Good! I’m all for drug company support and giving back! But if and when it’s needed, how can the MMRF or IMF be critical of the same companies which fund these organizations?
Remember a few weeks ago when I was writing about the high cost of Celgene’s thalidomide? Here are some of the quotes I used from a seven year old Wall Street Journal article, written by Geeta Anand:
Thalidomide is inexpensive to make. Fundacao Ezequiel Dias, a government laboratory in Brazil, sells 100-milligram capsules to the Brazilian government health system for seven cents. The pills are given to leprosy and cancer patients free of charge. A Netherlands pharmacy sells the same dose for about $2.60…
The company devised a system for dispensing the drug that requires, among other things, regular pregnancy tests for patients of childbearing age. Since thalidomide had been around for decades and the composition couldn’t be patented, Celgene would eventually patent this system of controlling distribution…
In theory a generic-drug company could sell thalidomide in the U.S., since the patent on the drug’s composition expired long ago. However, it would need to get the FDA’s approval for a distribution system to keep the drug out of the hands of pregnant women. Such a system would be difficult to devise without violating Celgene’s five patents on its own system. And the FDA might hesitate to approve an alternative system because Celgene’s system has worked well to prevent birth defects from thalidomide. Celgene says no other company has attempted to bring thalidomide to market in the U.S…
The two biggest advocacy groups for multiple myeloma haven’t made lower drug prices a priority. “I try to focus on the positive rather than coming after them on price,” says Kathy Giusti, president of the Multiple Myeloma Research Foundation.
Susie Novis, president of the International Myeloma Foundation, says taking on drug companies over pricing is a losing battle. “They won’t even discuss it. They say, ‘It is what it is,’ ” she says.
BINGO! There it is. As long as seven years ago, given an opportunity to champion the “little guy—us,the patient—both groups declined to use any leverage they might have to try and keep thalidomide prices down.
Now there’s Velcade and Revlimid—and they are even more expensive than Thalidomide. Soon there will be carfilzomib and pomalidomide and vorinostat and…
I’m going to stop here. You get the point. I’m not going to add a bunch of “to be fair” or “in defense of of” statements. We all realize far less would get done if myeloma fund raisers and researchers weren’t “in bed with the devil”—a good, well meaning devil—but the devil nonetheless.
Yep—it’s all about the dollars. And I don’t see how that can ever be changed, can you? But use of these dollars can be made more efficient. Research groups can learn to share information more freely, avoiding expensive duplication. The MMRF and IMF can work together more closely instead of competing with each other at every turn.
Most importantly, patients can demand transparency and respect. We can put pressure on the drug companies, MMRF and IMF to try and keep prices down on new lifesaving novel therapy agents they are all working together to create. We can remind the MMRF and IMF that they represent us—the patients—not the drug companies.
Feel good, keep smiling and don’t be afraid to express your opinions!