Looking for research on metastatic breast cancer? This can be a problem.
It was precisely for this reason that Dian (CJ) Corneliussen-James started a non-profit called METAvivor. “It was out of outrage,” she says.
For those who don’t know, people who have Stage IV (4) cancer have metastatic disease. Metastases means the spread of a cancer from the place of its origin, be that skin, breast, blood or lung, to one or more organs elsewhere in the body. “Ninety percent (90%) of metastatic cancer patients die of metastases. One hundred percent (100%) of those who die of breast cancer, die due to metastatic breast cancer,” CJ states.
“The public doesn’t even know what mets is. Say you’re stage IV and they ask when will treatment end. The Answer: When I die, “ CJ explains.
Why is there so little research on metastases?
CJ found that most of the funding from donations and taxes has gone to early detection and prevention… But it has made little difference. The same numbers are still metastasizing and dying. “Prevention continues to elude us and early detection has failed to make a difference for many cancers. Only lung and colon cancer have seen improvement,” CJ explains. “In the US only 2% of research funds go to Stage IV cancer research.…. One study showed the American Cancer Society gave ALL stage IV cancers only 2.3% of its research budget in 2010. The Federal government gave 0.5% to stage IV cancers in 2005. “The same is true for other organizations. ACS, Komen, Avon, NBCC ALL focus their funding on prevention and they NEVER defined CURE.”
METAvivor is trying to change the funding of cancer research. “One third of cancer patients die annually. 90% of these die from a metastasized cancer. So why isn’t Stage IV research receiving one third of the research funds instead of a paltry 2%?” No one seems able to explain this. Proportionate funding is key. And proportionate would be 30%.
CJ’s quest for research led her to friendships and working relationships with well-known researchers and cancer advocates such as Danny R. Welch, Ph.D. and Clifton Leaf. There are “Superb Stage IV researchers and proposals. But if they are funded at only 2%…they can’t do much with that, “ she says.
Research on metastases in all cancers is needed. “Progress in any stage IV cancer research helps other stage IV cancers. We need an increase in stage IV research across the board,” CJ states. “we need to rally the entire stage IV community; and we need the healthy community to help us raise our voices … say enough already! Help us promote 30% for 30%! They are welcome to 70% to use as they wish. We’re not asking for new money …we’re asking for a redistribution of existing funds. We’re asking for funding that is proportionate to the need. We are asking for 30%.”
Founded in 2009, METAvivor is 100% volunteer and a 501c3. METAvivor gives donors the rare opportunity to donate exclusively toward metastatic breast cancer research and have 100% of their donation used toward that end. METAvivor is in its fourth year of awarding annual metastatic breast cancer research grants and by the end of 2013 will have awarded more the one-half million dollars in research grants.
CJ served four years as President of METAvivor, stepping down this year to have more time to focus on her area of passion – advocacy. She now serves as METAvivor’s first dedicated Director of Advocacy.
For more information please read CJ’s post on trying to stay alive on 2% research and her post on 30% for 30%.
Medivizor applauds CJ and METAvivor efforts to draw attention to and focus towards a population that they consider not sufficiently well served by research funding.
The level of funding for different areas of research is a fiercely debated topic. The opinions expressed here are CJ’s and METAvivor and do not necessarily represent Medivizor’s stance. Instead Medivizor’s blog is providing a forum where various views and perspective, like the one above, are presented.
Medivizor does believe that prevention and early detection via screening have been shown to be effective for certain types of cancer (e.g. colon cancer) and can reduce or prevent suffering while reducing overall healthcare costs.
We encourage our readers to share their thoughts about the various issues discussed in this post.
What do you think?
I agree with you totally and I am too pushing for research funding for late stage breast cancer. I admire your work.
Here is the thing that upsets me the most is hearing that Brinker (Komen) has rec’d a raise (684K) and this infuriates me but there are still those die hard Komen supporters that say they saved a sister by providing, in part, to the patients clinical trial that continues to extend the life of the sister…..that’s great that Komen was able to help this person’s sister and Komen’s share helped to extend her life but was it a FAIR AND PROPORTIONATE SHARE? We are fighting on two battle fronts now-one with trying to regain the budget cuts that are affecting present and future research and two, fighting with these non profits (ACS/Komen just to name a couple) in giving a fair and proportionate amount of funding specific to stage IV cancer research! The American Cancer Society 2013 stats are as follows:
(F) 232,340 estimated new cases (M) 2,240 = 234, 580 est. new cases
(F) 39,620 estimated deaths (M) 410 = 40,030 est. deaths for both male and female
The new cases increase while the death toll remains virtually the same, so as a society, do we not recognize the overkill of prevention and early detection? The medical industry is over diagnosing for all types of cancer; Now add the budget cuts into the mix for the next 10 years and we have a stalemate and as a result, a probable uptick in these cancer deaths. Medivizor would be wise to recognize the need for such crucial advocating for proportionate funding in my opinion. As CJ states “…we’re asking for a redistribution of existing funds. We’re asking for funding that is proportionate to the need. We are asking for 30%.”
So we will see the various changes and cuts right before our very eyes and more now than ever before, we shall hear more public service announcements that being over weight and smoking will prevent cancer and eating your veggies will prevent cancer and taking Yoga classes and eating yogurt because we have poor eating habits and go walk because your physically unfit and all of these other BS infomercials will tell us that we caused our own cancer, which is simply not true! The message needs to change! Funding needs to change! Cancer is not cheap and neither is funding research……
Thank you for posting this information. I would encourage other organizations to post their statistics. Tell us what percentage of your research goes toward metastatic cancer research. We would love to be disproven!
I agree with you 110%, Hopefully things can get thru them and we can get our 30%. Its pretty upsetting that we get treated like this. GOd Bless You for your hard work..
As a woman who has lived the past six (!) years with metastatic breast cancer, I applaud the work CJ has been able to do–while dealing with this insidious disease herself! It is absolutely mind boggling to me how so little funding is given to studying how and why cancers metastasize–because people are DYING from metastases! I initially bought into the pink fluffy hype of early detection–until I was diagnosed with Stage IV breast cancer after receiving mammograms and sonograms on an annual basis. Screening didn’t detect the cancer–pain in my bones did! I implore each and every one of you to get on your soap box and inform the world we need a CURE–and we need it now.
Thank you all for the comments. I would add a comment on the “cure”. It is not certain whether or not stage IV can ever be cured. That should not dishearten anyone. Diabetes has not been cured. HIV has not been cured. But people with these diseases now live full, happy and productive lives because their diseases are controlled.
I would settle for a full, happy and productive live. Indeed, I would be forever grateful to have MBC “merely” controlled because that would give us our lives back. If we ask for a “cure”, then we need to define a “cure”, because to most organizations, the “cure” means a preventive vaccine to prevent breast cancer altogether. Thus if we ask for the cure, they’ll all say they’re fighting for the cure, even though they are doing nothing for us. cure. We need to force the issue by avoiding use of the word “cure” and instead shouting: “No more deaths from mets.” THAT will get our point across.
CJ, thanks for that important clarification. People do use the word “cure” often inappropriately. Your point helps focus the attention on the bigger picture.