Written by Terry Arnold, founder of The IBC Network Foundation

I recently shared a research publication regarding inflammatory breast cancer (IBC) in an IBC support group. One of the members of the group was stressed about the paper and said she found it depressing, the poor outcome language, sad stats and so on. I think sometimes our perspective of what is happening in the research world varies, as I get excited over every paper published, even if the news is not always uplifting.

And I would like to tell you why.

First off, there is little research done for IBC. Funding for breast cancer research might seem huge to the outsider as we have seen a sea of pink wash over us in the last twenty years. However, if you look at even the major charities, a good deal of their funds are directed to awareness, education and prevention. Sure, they might give a large sum of the funding to research but in reality, it is a fraction of their funds. I mention this not to throw rocks at anyone or any organization but to point out something about research that is not well known.

Truth bomb. There is not a huge bucket of funds just sitting out there being dipped in and doled out for research. That is not how it works.

I will try to make this brief, or it will turn into an article that will be as a long as the book “War and Peace.”

The skinny is when a researcher is hired into a lab, he or she are to seek out research funding. Normally an undergrad is under a more senior researcher, allowing them some time to develop new projects, help advance their boss’s research and then work to apply for grants, and then expanding research.

The next skinny is this.

No grants, no job… and since most of us need to work, here is where this truth really hits in the rare disease world, like IBC. Researchers in rare disease are truly risking their careers by going for research that is not what is referred to as the “low hanging fruit.” With any rare disease, there is not typically a large volume of patients in one location to study, making patient samples hard to get, data hard to collect, patients can’t travel to be a part of this to help collection, allowing research to be translated beyond “bench to clinic”  moving into clinical application of treatment or clinical trials.

So, when a researcher applies for a grant, even if the score on the grant is high enough to warrant funding, it might be declined or deferred due to what is labeled “low impact.”

That label does not mean the research will not be impactful. However what it means is the research might not help a high event volume of people for the relationship of the dollar amount ratio to number of people served. So basically, the grantor wants the most “bang for the buck.” I understand this. If my dollar can help 1,000 people, vs my dollar helping 100, I might go for the larger impact to show fiscal responsibility.  However rare diseases are then at a huge disadvantage and get pushed aside. This is why I said, “researchers are risking their careers, no grant, no job.” So, whenever I see a research paper, I say a silent “bless you” for their work, since I know the struggles they have suffered just to be in the space to get funded to then in turn, get published.

To wrap this up, I am sharing a snippet from an article on breast cancer funding, “Pink +”. This article was written by Dr. Oliver Bogler. He is at the National Cancer Institute (and also a male breast cancer survivor). The data shared is a few years old but the numbers have not changed much. I have linked the full article he wrote for us but this is portion relates to the graphic I am sharing.

Snip from the full article, Pink +

<In the last few days, I searched a database of funding called SciVal Funding, which captures major grants from US and European government and private funding agencies which have been awarded over the past decade or so. While I fully appreciate the limitations of such key word searches, I think the numbers of hits are at least food for thought. In the context of the observation that the search for “cancer” retrieved 227,262 grants here are the numbers:

  •  “breast cancer” found 35,283 awarded grants
  •  “metastatic breast cancer” found 1,280 grants (3.6%)
  •  “triple negative breast cancer” found 458 grants (1.3%)
  •  “inflammatory breast cancer” found 112 grants (0.3%)
  •  “male breast cancer” found 53 grants (0.15%)

(Please note that there is likely overlap so that it is likely, for example, that the 53 “male breast cancer” grants were also found in the 35,283 “breast cancer” results. The percentages are based on this assumption). >end snip

My reasoning for sharing this is many. I want people to understand that we need a more fairly distribution of funds in research. Rare diseases need a place at the table. Rare diseases study can overlap into other diseases, and also some diseases labeled rare, might not be all that rare at all but just something that was discovered and label properly.

So, please let’s get behind rare disease research and also support charities, like the IBC Network Foundation that is working hard to fill this gap. Truly, lives are at stake. Not just numbers on page but real people.

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