Crowdfunding for Myeloma Research: Is It a Good Idea?
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 that 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 are 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 the high-risk disease; comparing X-rays with whole-body low-dose-computed tomography (WBLD-CT) to assess bone disease; determining outcomes for relapsed/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. Brian G.M. Durie serves as Chairman of the International Myeloma Foundation and serves on its Scientific Advisory Board. Additionally, he is Chairman of the IMF's International Myeloma Working Group, a consortium of nearly 200 myeloma experts from around the world. Dr. Durie also leads the IMF’s Black Swan Research Initiative®.