Friday, February 4, 2011

Trying to Stay Alive on Two Percent

Since the New York Times published its recent article, A Pink-Ribbon Race, Years Long, and with the passing of Elizabeth Edwards late last year which attracted huge media attention,  metastatic breast cancer is having a spotlight moment of sorts.  And not before time.

The current level of research for metastatic breast cancer (and other metastatic cancers) is abysmally limited both in the United States and the rest of the world, despite metastases accounting for the majority of cancer deaths.

Today, I introduce you to guest blogger, "CJ" (Dian) Corneliussen-James, president of METAvivor Research and Support, Inc, who weighs in on the current state of metastatic breast cancer research and support, and a possible way forward.  This is not the breast cancer story we normally hear, and I hope you'll agree, this is a powerful and eye-opening article, which I urge you to share with your community.

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Trying to Stay Alive on Two Percent
by CJ (Dian) Corneliussen-James, President, METAvivor Research and Support, Inc.


My interest in the allocation of cancer research funds began January 13, 2007 ... the day I learned that only 1% of the $5 billion annual cancer fund was devoted to any stage IV cancer, despite the fact that stage IV causes 90% of cancer deaths.  I had just been diagnosed with metastatic (stage IV) breast cancer, or "BC mets" as we tend to call it, so the statement really hit home.

The stage IV research fund allocation is now considered closer to 2%, but that is still minuscule and breast cancer is a subset of that.  One might think breast cancer organizations would look after their own stage IV community.  They do not.  The vast majority of their funds go into prevention and early detection.  Their few so-called metastatic breast cancer research grants are often aimed at preventing breast cancer from metastasizing, not at finding solutions for those already at stage IV.  For this reason all the millions poured into the disease have done nothing to change the fact each year 73,000 - 86,000 Americans are diagnosed with terminal breast cancer and close to 41,000 die of the disease.

These and other facts are not well known.  The media, cancer organizations and drug companies prefer not to recognize our existence except to highlight an individual now and then as a stellar example of positivity and health despite their disease -- hardly the typical person with stage IV breast cancer.

The only ones trying to rectify this situation are non-profit organizations run by patients, working out of their homes as volunteers, dependent upon hard-to-get donations and grants and trying to get someone outside the metastatic breast cancer community to listen.  How many non-profits are doing this?  I know of only two.  METAvivor Research and Support, Inc , of which I am President, and Metastatic Breast Cancer Network, directed by Ellen Moskowitz.  Upon meeting Ellen in 2008, we quickly agreed that any duplication of effort was a complete waste of time, energy and money.  So we work as complimentary organizations with METAvivor targeting research, support and awareness and MBCN targeting advocacy.  We lend each other support, encouragement, advice and friendship.  Progress has been slow, but we have made some headway.

METAvivor awarded its first research grant in January 2010 and we are very pleased with the results. We could do a lot more with an increase in donations, but we work hard to put our small grants to good use.  METAvivor is willing to fund the out-of-the-box ideas ... the ideas others will not touch.  We do this in the hope that at the end of the year the results can be placed in a nice, neat package that appeals to the "big bucks" organizations, which will hopefully pick up these projects and fund them to completion.  METAvivor also promises something promised by no one else.  We put 100% of every research-designated donation into our research grant because what we want more than anything is a solution that will allow all stage IV patients to live without the constant knowledge that each year could easily be their last.

Why are other organizations not funding stage IV research?  Here are my thoughts:

1. Image and Turn-Around:  Grant-givers prefer projects of short duration with a relative certainty of success.  That is good for the image and encourages future donations.  Mets research is enormously complex and the best chances for significant improvement tend to be out of the box ideas. Such research takes longer to accomplish and the predictability of success is shaky.

2. They are Getting Away with It.  Cancer organizations have used token advances to claim they are making great strides forward with metastatic cancer.  The advances they speak of are rare and normally involve extending life at best for several weeks or months, but this is not made public.  Even those who know the truth keep giving, including some of those dying of the disease.  They are caught up by the glamour, the big names and the enticing events.   There is no need to take the difficult road.

3. Money .. Money .. Money.  Metastatic cancer research is enormously expensive, especially if sufficient models (animal or otherwise), which are critical to much of the research, are to be developed.

What would METAvivor do if money were not an issue?  No question there.  We would convene a conference and bring together the world's premier, career metastasis researchers to develop a 20-year collaborative plan aimed at eradicating death from stage IV breast cancer.  We know this is possible .. we need only the funding.

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Brief Biography:
After spending 24 years as an Air Force Intelligence Officer, "CJ" (Dian) Corneliussen-James, retired as a Lieutenant Colonel and took a Senior Analyst position in the Defense of Defense.  Slowed down by the diagnoses of both metastatic breast cancer and systemic lupus in 2006, she retired from the government but was soon busy running a support program for metastatic breast cancer.  Her quest to fund much needed research for the disease led to the establishment of a 501(c)(3) non-profit organization, METAvivor Research and Support Inc., of which she is President.   CJ lives in Annapolis, MD.

17 comments:

  1. Anna, once again I applaud you on another persuasive and intelligent post - the world needs bloggers like you! Keep up the great work.

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  2. This is crucial. NBCC has also promoted a focus on mets research as part of the Breast Cancer Deadline 2020. Excerpt from this essay is posted on Pink Ribbon Blues with a link to your site.

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  3. I can't believe such a small amount of donated funds is used for Stage IV research. For those of us with OC, nearly all of whom are metastatic, we don't see the separate classes of patients, and our donated funds are used in all areas of prevention, research, and treatment.

    Thank you for bringing this lamentable situation to my attention. I applaud your efforts!

    Sarah

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  4. BRING IT BRING IT BRING IT! Women with cancer need this kind of information, energy, and vision.

    Count me in.
    Jody

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  5. I had no idea the funding was so abysmal. Very eye-opening article. Your energy is SO inspiring!

    Sarah

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  6. CJ--thank you for continuing to make a difference for BC mets research. You are truly an inspiration.

    --Katherine, volunteer with Metastatic Breast Cancer Network (www.mbcnetwork.org)

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  7. It frustrates me that well meaning people year after year give money to organizations whose titles and events are misleading. Any event that has the word "cure" in it leads people to think "research". Let's spread this information far and wide. From now on when someone wants to make a donation, I know where I will direct them!

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  8. Thank you all for your comments. CJ has written a tremendously powerful article, that reminds us that we must keep talking about this and demanding change in the way our major charities distribute funds. It is a disgrace that less than 2% of research funds are directed to a stage of cancer that accounts for more than 90% of mortality. I believe this is a situation that can change, but with it must come a huge change in public mindset. The public must start demanding more accountability from the charities they donate to, and ask deeper questions about where their donations are being spent. Government and industry must also play a role and change the way in which cancer research is prioritized. An integrated, evidence-based and consultative research methodology is required and a concerted push to avoid the duplication of efforts that CJ mentions in this post. We must just keep chipping away at this issue. Too many lives are at stake for us to fail in this challenge.

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  9. Sigh. Yet another of pink's little secrets. Makes me both sad - because there are so many still being diagnosed and and hopeful - because of folks like CJ and orgs like METAvivor and MBCN doing their thing.

    Thanks for writing it, CJ and sharing it, Anna. I'm linking to it from my blog if that's ok...

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  10. Please do share this Felicia....it's just so important to get CJ's message out there...

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  11. This is an important -- and shameful -- story. Thanks for posting this. I will be sharing it, believe me.

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  12. Anna, I had no idea the dollars were so pathetically low. Shocking really and very sad. Thanks for CJ's post and all you're doing to raise awareness here. Hopefully, things will change one day in the not too distant future.

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  13. Anna, This disparity of funding is outrageous and unacceptable. It's time to spread the money (and the word) around. Thank you the post.

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  14. Someone Trying to Stay Alive on Two Percent. The current level of research for metastatic breast cancer is abysmally limited both in the United States and the rest of the world, despite metastases accounting for the majority of cancer deaths.

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  15. You should watch the video link to Nancy Brinker of Komen on Tavis Smiley's show on 10-1-10 where she makes the comment that "no one can afford to treat all the late-stage cancers."

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  16. http://www.pbs.org/wnet/tavissmiley/archive/201010/20101001_brinker.html

    Sorry, I believe I forgot to include the link to that Nancy Brinker interview on Tavis Smiley's show.

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  17. Thank you for posting CJ's piece.

    As a non-profit organization dedicated to funding research for breast cancer, we are proud that our first clinical trial was for metastatic breast cancer patients.

    One of our goals is to help spread awareness of metastatic breast cancer...two percent is a shameful figure and I hope CJ's hard work will result in an increase in research.

    Julie
    The Side-Out Foundation

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