Wednesday, April 7, 2010

Questions and Answers: CCFC Donations and Research Funding

A few days ago I sent an email to 3 different people within the CCFC (Crohn's and Colitis Foundation of Canada) asking two questions about how donation dollars are spent and how it translates into actual results. Recently as I was making a donation, I wondered whether my donation dollars were funding research that might later lead to a treatment that would cost me a small fortune to access for myself. I also wondered whether promising but potentially non-profitable treatments were funded.... such as the Helminthic Therapy which I had previously mentioned on this blog.

Pleasantly, I received a full reply to my questions only one day later from Dr. Tolomiczenko, the Executive Director of Research & Scientific Liaison for the CCFC. In a nutshell the response is about what I expected. Patents for treatments are held by whoever applies for them, regardless of who funded the research. I can only assume the CCFC does not apply for patents themselves, and why would they? The doctors and companies connected with the research are solely responsible for getting a treatment to market and bear those costs themselves and therefore can charge whatever they want for it. It would be impossible for the CCFC to go the next step of translating research results into actual treatment products, and this is not their mission, nor should it be.

As for which research they fund, this is totally open as long as there is scientific merit to the research and it has a chance of advancing toward a cure for IBD. This is regardless of whether it would lead to a profitable treatment or not. They also focus on research that increases our understanding of IBD and it's causes- and that's a good thing.

So, ultimately it's not the "I funded it, so I should get free access to it" answer that I dreamed of but didn't seriously expect. It's just not feasible. Bringing a treatment from research to actual product (or service) is a lengthy process involving many individuals and organizations. I myself guess that most doctors and scientists working on this research are doing so in the employ of a large company who actually owns the results and would determine it's cost to patients. Companies like this would be unlikely to pursue research that does not lead to a profitable product. I assume that this corresponds to the types of research proposals sent to the CCFC. I think this leads to the question: how do we get companies and scientists to pursue research that is promising but maybe not as profitable? Government grants? Social pressure/encouragement? I'm open to ideas.

I think the CCFC is an important ally in our struggle to find a cure for our disease. I hope we continue to hear good news about advancements in our understanding of IBD and more treatment options - hopefully some that don't involve powerful drugs.

If you are interested in reading my actual email to the CCFC and the reply email I received, they are included below.

Dear Dr. George Tolomiczenko,

I am writing to you as a CCFC member, as someone who has Crohn's Disease, and as someone who makes additional donations to the CCFC. I have a couple of questions related to how the CCFC funds research projects and what happens to the results of this research.

I'm very excited by the projects that the CCFC currently supports, such as the Gem Project, and I think that projects like these are donations well spent. Recently however I was investigating treatment options for my Crohn's Disease and discovered that some treatment medications cost close to $1,000 per infusion! This got me to thinking about the research that the CCFC funds. I have two main questions regarding this.

1) Who owns the patents for, or who determines how much any treatments or cures discovered by CCFC funded research will cost? I find it disconcerting to think that my donation dollars might help to discover a cure or treatment that may later cost me a small fortune to access for myself. Who gets to profit off of treatments discovered by CCFC funding?

2) Does the CCFC also fund research that may lead to viable but possibly non-profitable treatments or cures? Some research on Helminthic Therapy by Dr. Weinstock (His Paper: comes to mind. This therapy seemed to be showing promising results, and then research for it seems to have disappeared. Is this because it would not be a profitable treatment?

I want to stress that I am proud to be a CCFC supporter and am just curious to learn more about what happens with my donation dollars. Thank you for your time and for all the great work that the CCFC does on behalf of those of us with IBD.

******* ********

Dear Ms. **********:

CCFC uses a peer-review approach to funding research across a broad variety of areas related to IBD. The majority of the research has been focused on basic science so that we can understand aspects of CD and UC that are necessary - though not sufficient - steps toward cures. The current strategic plan directs CCFC to steer more money toward supporting research that is more clinically focused through targeted initiatives such as the new Pediatric IBD Research Initiative currently in development. To answer your questions directly:

1. Patents are held by the individuals or institutions that file them. CCFC is currently developing an intellectual property policy to give the foundation more of role than it's had in steering research in the direction of development into new treatments and products. This is almost entirely in the domain of companies that have the resources to move ideas from the "bench to the bedside". This typically costs quite a bit and can lead to expensive medications that cost much to make. To recoup their investments, industry charges what payers are willing to pay. The profit incentive is very powerful and serves to drive drug development and other innovations.

2. CCFC is open to funding any and all proposals of scientific merit that have a chance of advancing toward a cure. The helminth exposure work connects with a wide range of "toll-like receptor" and "cell signaling" research that is ongoing among a number of different scientists across Canada. We are working with our scientists to ensure that they translate their science into hope for cures in plainer English but that's certainly not an easy task.

I hope this addresses your questions. I would be happy to talk with you at some point by phone if you would like. This would work best if you sent me a few times that would work for you and we could arrange an appointment.

Thanks for your questions!


George Tolomiczenko, Ph.D., M.P.H., M.B.A.
Executive Director of Research & Scientific Liaison
Crohn's & Colitis Foundation of Canada

No comments:

Post a Comment