There has been some discussion lately about an alternative method of funding myeloma research known as crowdfunding. Crowdfunding is the act of raising money from a large number of individuals on the internet for a specific project or venture.

Is this something which might be helpful for the myeloma community? Perhaps.

Fortunately, many mechanisms currently exist for myeloma research funding through the government-funded National Institutes of Health (NIH), National Cancer Institute (NCI), and private foundations. The question is: what types of research are not receiving adequate early or “pilot” funding (the typical type and level of funding that comes from crowdfunding)? The answer is funding is available. If there is promising new drug activity for the treatment of myeloma, a rather robust venture capital marketplace has emerged to move testing forward.

So, where does crowdfunding fit into the myeloma-research scheme?

Investigations into more basic scientific questions require substantial ongoing funding (from the NIH, for example). Velcade ® is a case in point. As I explained in a previous blog, its development was the result of many years of research into the mechanism of cell action, at a cost of hundreds of millions of dollars.  Crowdfunding might not be a good fit for this type of research since the payoff comes many years in the future. For simpler translational-type research projects, which might benefit patients in the shorter term, there are several mechanisms in place, both private and corporate.

In this arena, it is important to prioritize and not squander resources. I believe that the most critical source of prioritization at the present time is the IMF’s research division, the International Myeloma Working Group (IMWG). Through the IMWG workgroup activities, top-level projects are identified—those that can have the greatest impact upon the myeloma community, based upon the collective input from the top investigators in the field. Those projects include: clarifying the nature of high-risk disease; comparing X-rays with whole body low-dose-computed tomography (WBLD-CT) to assess bone disease; determining outcomes for relapse/refractory patients and of course, the Black Swan Research Initiative ®.

Articulating the need for and importance of these projects has led to substantial funding and has allowed them to proceed. Are there other projects which deserve funding? Possibly. But to avoid wasted efforts and conflicts, it is best that these be evaluated and discussed, with crowdfunding as one possible mechanism of pilot funding if needed.

Donors and patients are now highly informed and need to know the value of projects as a basis for decision-making. There is also a need to know if alternate sources of funding are actually available and, if crowdfunding is a “last resort,” where does it fit in the scheme of overall funding?

Time will tell how crowdfunding for myeloma research will evolve. But as yet it is unclear if there really is an urgent need for this type of funding and how effective or valuable it can become.

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

Comments

Dr Durie, I respectfully disagree and the main reason you yourself addressed;: "Through the IMWG workgroup activities, top-level projects are identified—those that can have the greatest impact upon the myeloma community, based upon the collective input from the top investigators in the field. "
By limiting research projects to only those that have the greatest impact on the myeloma community, you are effectively ignoring the more rare and generally more aggressive forms of MM such as Primary Plasma Cell Leukemia. While only a small number of patients each year are affected, the lack of research, studies and clinicals for this disease offer no hope for this most aggressive form of MM. Great progress has been made in MM over the past years, but little to none has been advanced in pPCL.
If crowd funding resources spur a single institution, physician or researcher to further investigate possible therapies to improve the survival rate of pPCL patients, it will be more than worth it.If crowd funding allows this disease to gain attention from MM specialists, it will be more than worth it. If crowd funding spurs a single study which might help my husband live longer, or which will prevent another family from the fear, hopelessness and frustration of dealing with a disease that is essentially ignored, IT IS WORTH every penny raised.

We're still enduring the horrible chemo, we're still dying from MM long before our time, I've heard researchers speak and a common theme is lack of funding. The drug companies and hospitals are grossing over $5b per year off us in terms of maintenance and upfront treatment. that is incentive for new efforts. Every dime and every reasonable effort available should be pursued. its time for a cure.

Dear Vicki,

In case you are not aware of the Myeloma Crowd Radio interview with Dr. Guenther Koehne at Memorial Sloan Kettering Cancer Center in New York City, please search the Myeloma Crowd Radio archives for this interview that took place on April 11, 2015. Dr. Koehne successively treated a myeloma patient with plasma cell leukemia using a pioneering T cell depleted allo transplant technique. You might find the interview of interest.

You will also be linked to a video on the MSKCC website that includes short interviews with Dr. Koehne and his patient who survived the transplant.

It appears that my husband who is a myeloma patient (in New York City) and has been successively treated with Kyprolis for two years is slowly beginning to relapse. As recently as last Friday, his oncologist suggested that he have a consultation with Dr. Koehne regarding one of the new allo transplants that are being offered at MSKCC, which my husband's oncologist believes is potentially curative, although in the early phases of investigation.

I wish you and your husband the best.

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