2 Percent is for Milk, Not Cancer Funding

This post originally appeared in Anna Rachnel’s excellent Cancer Culture Chronicles.  I was shocked when I found out how little research money is going to metastatic Stage IV cancer: two percent. Anna’s comments follow. –Jackie Fox

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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.
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Save the Drama for Your Mama

This is an open letter to every woman in a waiting room or chemotherapy room who feels compelled to share her every thought on treatments past or present: Don’t.

I thought about this after reading some mordantly funny tweets from Anna, who blogs at the Cancer Culture Chronicles and started another round of chemotherapy this week.

People seem to fall into one of two categories. They’re either determined to scare you out of your wits, or they get into a twisted kind of one-upmanship. One of Anna’s tweets was about a woman who was bragging about her good veins. Seriously? Does she have a bumper sticker on her minivan that says, “My veins are honor students at Oncology West?”

Anna’s running commentary reminded me of my experience before having my first-ever surgery, a wire localization/outpatient surgery. (I’ll translate. My cancer was so early stage there was no visible tumor yet, just tiny clusters of cancerous cells.  They used a mammogram to guide a wire into my breast, which guided my surgeon to the bad cells so he could try to clear them all out.)  

The woman who was having the same procedure just ahead of me talked absolutely nonstop, like a Chihuahua after one too many lattes. And why is it that these women never have pleasant voices? Anna likened one of her waiting room companion’s voices to a buzzsaw. This woman was a dental drill.

She had an opinion on everything from surgery to my socks. I had decided I was going to own this experience so I had on a loud pair of smiley face socks. When I didn’t remove them as recommended, she said, “You’re supposed to take off your socks!” Great. A loudmouth and hall monitor.

This woman felt compelled to tell everyone about the sheer hell she and I would be going through. The stereotactic biopsy I had leading up to this was not wonderful, and the thought of having a wire inserted into my chest was getting me worked up into a pretty good lather. So were some of the women waiting for a mammogram.

After she had us sufficiently terrified of all things breast-related, my nightmare companion went on to describe how a vaginal biopsy was the most excruciating pain you could ever experience. At this point I wanted to punch her, but I just shrank into my chair.

The one silver lining was the kind woman who came over and put her hand on my shoulder after the loudmouth finally left. She said, “When people tell those kinds of stories, I’ve found it’s best to just stay in your own little bubble.” When they called her away, she smiled at me and said, “Remember, stay in the bubble.”

Her kindness has stayed with me, and I hope I have managed to repay it, through my writing if nothing else.

Equally high on the kindness chart was the nurse who told me getting the wire inserted into my chest would be comparable to a needle stick for a blood draw, and she was right.

So if you happen to end up sharing space with the bragger, the buzzsaw or the fearmonger, just remember, “Stay in the bubble.”

The Gift of Little Girls

One of the things I promised myself after being diagnosed with breast cancer was that I was never going to work on my birthday again. My birthday’s in late December, so when I was a kid it was always during Christmas holiday. For some reason I decided this would be a good way to spend the rest of my working life.

I had big plans this year: reading The Bolter on my shiny new Christmas Kindle, surfing the web, blogging, reworking poems. Then came a knock at the door. It was a flock of four little girls and a big friendly orange cat. I’d seen the cat around; he greeted me with a head butt and twined around my legs. “He likes you,” one of them said.

The little girls told me they were going door to door to try to find his owner. I said I didn’t think he was homeless but if he needed one I’d sure take him, since my kitty had passed away a few months back. I wished them luck in their search and went back to my laptop.

Knock knock knock. They were back.

“He won’t follow us. Do you still have a leash?” (They must be dog people. Cats don’t do leashes, or following.)

“No, I”m sorry, I don’t.”

“Okay.”

Back to the laptop.

Knock knock knock.

“Can you show us how to hold him?” (They’re definitely dog people.)

“Sure, but kitties don’t always like to be held. We’ll see.” I scooped up 15 pounds of cat and he didn’t protest for the first 20 seconds, then started squeaking. I set him down. “He asked nice but he didn’t like that. I’m sure he’ll be fine.”

“Oh, okay. Thank you.” I went into the house.

Knock knock knock. Little blond girl. “Will you watch him while we go knock on doors?”

It was actually a pretty decent day for late December in Nebraska–something like 50 degrees. I thought what the heck, I could do worse than hang out with a cat. “Sure, I’ll watch him. I’ll be right out.” I wanted to grab my Kindle. I closed the door.

Knock knock knock. Little brunette girl. “We just wanted you to know we decided if he doesn’t have a home, we think you deserve him.”

I could feel myself melting into a puddle. I said, “Well, thank you. I appreciate that.” And off they went.

I watched them walk away, hair shining in the sun, on a mission to save a cat. I pictured them growing into young women, comforting each other through their first loves and losses, and later, the heartbreak of cancer, the same way they comforted me over a cat. We need to give these little girls a different outlet for their kindness by the time they grow up. I think they deserve it.

Has Komen Lost Its Way?

I want to like Komen. I really do. But they’re making it harder and harder. They’re turning into a sad case study of how organizations, like people, can forget where they came from. Komen seems to be devolving from advocacy to corporate brand. And they’re every bit as protective of that brand as Disney or Pepsi; probably more so as evidenced by the recent flap over lawsuits.

In a way, Komen is a victim of its own success. It’s a PR truism that the bigger you are, the more tempting of a target you become. Komen has used this argument in their own defense, as Gayle Sulik reported in Poor Pink Goliath. But that doesn’t mean you have to shoot yourself in the foot.

No one has ever done awareness building better than Komen, and it’s a pretty safe bet that pink ribbons are as recognizable as the golden arches. So their awareness goals would seem to have been met. This is when marketers “evolve the campaign.” Given their founder’s stated desire to end breast cancer forever (I’m not making this up; it’s on their website)  research offers the best opportunity to do that. It’s where the rubber meets the road in fighting this disease.

Yet just the opposite has happened, as Anna Rachnel reported in her excellent two-part series “Komen by the Numbers.” Do we really need more awareness, when every October sees us drowning in an ocean of pink? Is their mission to find a cure, or is it to perpetuate the brand?

Let’s take the cynical view and say it’s to perpetuate the brand. If so, you’d think they would show far more discrimination in what they endorse. Most large corporate brands are selective about what their names and logos are associated with. Not Komen. Do we really need to see pink ribbons on buckets of chicken and vaccuum cleaners? How are we supposed to react, other than to think they’ve crossed over from awareness to anything for a buck?

On a related note, why is it okay for Oreck to team with Komen to Clean for the Cure, but not for someone to use Mush For A Cure without being threatened by Komen’s lawyers? Can it be because Komen isn’t getting a cut?

Does Komen really think anyone’s going to confuse Mush For A Cure with Komen’s Race for the Cure? Do they really think the $10, $20 or $50 someone might give MFAC will preclude these people from giving to Komen? Actually, it might. Not because of any confusion over where the money’s going, but because Komen has created a self-fulfilling prophecy. I’d love to know how many people are turned off enough by Komen’s “Lawsuits for a Cure” strategy and lack of research funding to decide to donate their money elsewhere.

Komen is clearly at a crossroads. It’s time for them to decide who they want to be, an organization devoted to finding a cure for breast cancer or a corporate brand. I hope they decide to get back to their roots and give us a reason to like them again.