All Aboard The Pink Gravy Train......

Garden toolkit benefitting NBCF

Recently my beloved and I were shopping in our local big-box hardware store.  Beloved stopped at a large display of pink gardening tools.   Pink hoes, rakes, trowels, loppers, snippers;  you name it, we saw it.  Once he stopped laughing he inspected the packaging on one of the items and found that a portion of the money's raised from the sale of the product went to the National Breast Cancer Foundation ("NBCF").

He stared for minute, pondered and then said to me "Oh NBCF?  They're one of the good ones aren't they?"  I then asked him why he thought that.  He then said,  "Well their name sounds very official and look at their logo. Aren't they for research?"  Well, not really, but more on that later.

A name and logo that seems to suggest some kind of official credibility in the minds of consumers.  Canny marketing to say the least, and the clever kind of branding that even had my beloved  pausing for thought.

But (luckily) he's married to me.  And as you know readers, I ask questions first before any money leaves my pocket.  Perhaps some of you are wondering how I go about researching an organization.

I find going straight to the source is a good place to start.

First stop, the organization's mission statement.

That's nice, but not necessarily a mission that I would support, given that I'm more interested in activities that might help actually eradicate breast cancer, which to me means research.  But does NBCF support research at all? Not according to its mission statement, but further digging yields this little snippet from a section on "Partnering with NBCF";

So apparently they do support some research through "breast cancer research projects", but exactly how much?  This requires a bit more exploration into the wonderful world of non-profit financial reporting.

I think any organization interested in transparency should have their Audited Financial Statements and IRS Form 990's linked on their website.  If they don't, that's an immediate red flag in my opinion.  Check the "About Us" section, "Media" section,  or run a search on their website for their financials.  Failing that,  go to Guidestar.org, register for free, and you can find copies of IRS Form 990's for most charitable organizations.  (Click here for a guide on how to read a Form 990.)  Generally I avoid looking at the financial information listed in an organization's annual report, because it's usually summarized in a form that the organization wants to report and lacks the detail that I'm interested in.

In this case, NBCF's audited financials and Form 990's were readily available on their website.  From their audited financials, I was able to determine that research only made up 7% of their program allocations for 2010.  From total revenue and support of $10.1M, research amounted to $716k.  Not much when you compare the expenditures on "Awareness" ($3.7M or 37%)  and "Detection" ($2.1M or 21%).  Or even "Fundraising Expenses" for that matter which accounted for $1.0M or 10% of total revenues.

Now I'll be the first to agree that not every breast cancer organization has to fund research.  Certainly patient support, assistance with treatment, education, and screening and diagnostic programs are important functions,  in coping with breast (or any other) cancer or other incurable illness.  But as I've said before, the focus on breast cancer awareness and early detection seem to be the favored programs by so many organizations and I continue to harbor serious concerns that all of this expenditure is coming at the expense of potentially life-saving research.  And don't even get me started on the massive duplication of breast cancer education resources!

In this case, NBCF advertises to potential sponsors that some of its donations go to "breast cancer research programs", but without any supporting detail.  Why does NBCF mention research when attracting sponsors but neglect to mention it at all in their mission statement?  This seems odd to me.   Is this a deliberate attempt to avoid public scrutiny on the whole question of research, whilst still appealing to sponsors who are interested in funding research? I really don't know the answer to this question,  but  how many donors, sponsors and indeed, consumers of all those NBCF pink products, are aware that only 7% of NBCF's funds are being used for research?

From NBCF's financials it's clear where their priorities lie.  Awareness and Early Detection.  But what are NBCF doing differently that isn't already being done by so many other breast cancer organizations? What about Susan G. Komen for the Cure®, for example, who also demonstrate similar  Program spending, but on a much larger scale?  What are NBCF doing, that Komen isn't already doing?  How much more awareness and mammography for under-resourced women do we need?  Where's the evidence that this kind of spending is yielding meaningful results in stemming the breast cancer epidemic?

And so I continued to explore NBCF's resources.  Their website is pretty, fairly user friendly and clearly laid out.  But what about website content, which no doubt forms a large part of their Awareness program budget?  There's a discussion forum and social networking application which some might find useful, although this feature is not unique in the online breast cancer community.  I clicked through many of the links to breast cancer information, and didn't find anything new or different from other breast cancer websites.  Same information.  Same messages that early detection saves lives.  Same lack of scientific discussion.  However, it's obvious to me that NBCF have mastered the art of repackaging generic information and presenting it in an appealing way.  An excellent example of this is a new educational resource that NBCF recently released.   In their words, "an innovative, online resource for breast cancer education", it's basically an animated video presentation and website called Beyond The Shock® which is separate to their main website;

"BeyondTheShock.com utilizes ground-breaking technology and the resources of the global medical community to create an accessible platform for understanding a diagnosis of breast cancer and to help women understand all the treatment options available to them."

The resource is certainly aesthetically pleasing and graphically stylized, set to a stirring musical soundtrack, narrated by a comforting motherly voice  and is also very pink.  It also utilizes a metaphorical theme likening the experience of breast cancer to that of a train journey.  A journey that weaves through what looks like magical pink lollypop land to me.

Screenshot from the Introduction section

After watching the Introduction....

"...[y]et somehow these challenges become fertile soil or seeds of strength, love and resilience mature and grow strong...", 

and the Conclusion ....

"...[f]amily, friends and other breast cancer patients are your shield and safety net, carefully knit together to strengthen you.  Alongside them your triumphs over new hills will be celebrated and your struggles through new valleys will be endured....."  

and feeling rather underwhelmed I decided to take a look at Chapter 5 "Types and Stages".  I watched the subchapter on Stage IV.  All one minute and five seconds of it.  I learned that;

• I might find treatment exhausting.

• I should "...make careful decisions and plans.."

• "....many women discover strength of character and qualities of resilience they never knew they had..."

• I should have a good support network of family and friends.

Ho Hum.  Thankfully, I never heard the words "death",  because that would be a buzzkill after my lovely pink train journey.

As for NBCF's main website.  More of the same pretty pink graphics and nifty little tools.  Catchy programs with names like Help for Today...Hope ForTomorrow® through its National Mammography Program, Early Detection Plan®, MyNBCF online social community, the Pink Ribbon Challenge, and the usual stock of generic and duplicated educational information that we see on many other breast cancer sites.  Shockingly, I couldn't find much information relating to metastatic breast cancer other than a few little definitions here and there and of course that lovely trip through magical pink lollypop land.

But interestingly, although NBCF's mission statement states that it provides "mammograms for those in need" and provides "nurturing support services", from the website I couldn't find out how to get a mammogram, nor do they list a telephone number on the "Contact Us" section.  Too bad if you do need a mammogram or some nurturing support!

But there was plenty of information if you're considering donating or becoming a sponsor!

But I am pleased to see that NBCF is diversifying beyond the business of breast cancer and pink train journeys,  into the self-defense industry.

I may have Stage IV Breast Cancer, but at least I'll be well-armed.  Well not against breast cancer, but all those nasty perps.

Thanks NBCF!

www.reddotshooting.com

One of the good ones?  You be the judge. 

MBC Needs You!

Whilst at the National Breast Cancer Coalition's ("NBCC") recent conference, I had the opportunity to attend a meeting for women dealing with metastatic breast cancer ("MBC").  There were about forty women in attendance.

The meeting was similar to in-person support groups, where we all went around the room and introduced ourselves.  I started off and gave my age, and talked a little about my blogging activities and my feelings about having MBC.  As we proceeded around the room I noticed how much more detailed everybody's introductions became, expanding to include detailed  MBC diagnoses and also their primary diagnoses.

What struck me was the number of women who revealed they were originally diagnosed at Stage I and went on to develop MBC at a later point.  Surely this unscientific observation alone is a stark and serious reminder that MBC can happen to anyone.  Regardless of stage at original diagnosis.  In fact, Dr Susan Love, noted author, and founder of the Dr Susan Love Research Foundation and the Army of Women, discussed in the workshop that I attended, that the Staging system is in her view obsolete.  Staging is not a predictor of survival.  Molecular biology of cancer cells and the cell micro-environments trump staging hands down.

Here in this room, was living evidence of Dr Love's theories.

The women in this room came from all walks of life and all age groups, although I think fellow blogger @whymommy and I were the youngest.

Each of the women in that room,  I would describe as strong, feisty, intelligent and mad as hell about the state of  MBC advocacy and research.  We understood only too well when someone said "We need to be our own advocates".  There was a resounding "Yes!".  But then, someone else added this comment:

"But, as well as being our own advocates, we need the rest of the breast cancer community to advocate for us as well".

"YES!!!!!!!!".

It seemed so simple, but then I thought about it and I realized that this is something that is not happening on a wide enough scale.  Why?   MBC advocate Musa Mayer presented some thoughts on this issue during one of the NBCC workshops.  Musa says;

"Very few advocates focus on MBC-- WHY?":

• Avoidance:  Vast majority of advocates are primary breast cancer survivors at risk of recurrence. "We are what the pink crowd wants to forget because we are the painful reminders of what can happen"

• Expertise required:  Lack of knowledge about complex MBC treatments and the different issues that women with MBC face

• Lack of data: Incidence and prevalence of MBC unknown, so basic tools for advocacy are missing

• Screening and early detection still a primary focus

• Naivete and fatalism both play a role

I'd like to add a few more thoughts to expand Musa's list and perhaps highlight why I think it's so important that we also draw advocates from outside the MBC community.

• Reduced Priorities:  Many of us are struggling with grueling treatment regimens, and our energies are focused on just staying alive and trying to enjoy our lives as best we can.  It's incredibly difficult to find the room to expand our priorities and the time to focus.  In some respects it literally comes down to focusing on what's important from an individual perspective as opposed to a collective view.

• Succession:  Let's face facts.  Our community is made up of people dealing with incurable and mostly terminal illness.  We are all too painfully aware that our time on Earth is limited.  Who's taking the reins when we are gone?  Do the issues simply die with us?  

It's clear to me from my forays into social media and many of the online discussion forums that there are deep chasms within the breast cancer community itself.  Many people who have known a breast cancer diagnosis seem to view attempts to question the status quo,  as being simply angry, negative, bitter or just plain mean-spirited.

The armchair psychologist in me tends to think that this kind of reaction seems to come from people who believe themselves cured of their cancer.  They seem to have adopted the notion of survivorship with such celebratory fervor and zeal, that they tune out any information that may possibly lead them down a path that is personally confronting and contradictory to the culture which they have felt embraced by and have embraced in return.

Trust me when I say that I get it.  But the trouble is, by refusing to entertain an alternative viewpoint we just feed and maintain the status quo.  And for the MBC community the status quo means;

• no significant decreases in mortality in decades; 
• rates of MBC diagnosis that have remained constant for more than 40 years; and
• incremental drug treatments whose "success" is judged by survival in weeks and months;
• very little research funding and focus; and
• disease which is incurable and responsible for 90% of breast cancer deaths

I'm thankful that we have some key organizations helping the MBC community to mobilize and advocate, including MetaVivor, Metastatic Breast Cancer Network, and AdvancedBC.org, to name a few, and links are listed on the right side-bar.  Indeed, the NBCC is also chairing a Metastasis Prevention Summit in August, which has drawn some criticism from the community as to the specific agenda, but I'm hoping to see some action items that might benefit people already dealing with MBC, in addition to benefiting those yet to be diagnosed with MBC.   There's also going to be an Advanced Breast Cancer International Consensus Conference to be held in November in Lisbon which will be addressing many issues related to MBC.  (Incidentally, there are reduced registration fees for patient advocates wishing to attend this conference).

But we need more.  We need a critical mass of advocates for MBC, and we need to draw people from outside of the community.

Here are some ideas of things you can all do to help advocate for MBC:

• Join the mailing lists for all these organizations and stay up to date with MBC news and initiatives, and share it with your communities
• Join Dr Love's Army of Women and participate in research. (It doesn't matter where you live in the world!)
• Attend conferences and  workshops relating to MBC.  Get informed!
• Donate to organizations that support research and advocacy for MBC (see list on this blog)
• Get active in social media.  Start blogging, tweeting, or join Facebook and/or simply start participating in online discussions.   MBC represents an alternative viewpoint and we need to get it out there. Have an opinion and share it.  Every voice matters. 
• Question, question and keep questioning.  Don't be afraid to dissent; this is what generates discussion.  Just be heard.
• Most important of all.  Don't ignore MBC.  The community needs your support and every little bit helps.

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

This post is dedicated to my Twitter friend Sarah of @sprucehillfarm  who passed away last night from metastatic breast cancer.  RIP gorgeous lady, I will miss our chemo-day tweetups.  How many more?  

  

My Girlish Dream

No shovel but a dream trip regardless. Egypt, April, 2005

When I was a kid I had big dreams for myself.  At the top of the list?  Archaeologist.  And me excavating a previously undiscovered ancient Egyptian tomb.  Whilst some kids were setting up lemonade stands in their front yards, I had a backyard museum.  It was full of things that I'd gone digging for in our garden.  I found some cool stuff too.  A little leather purse with pennies in it, broken bits of china, and okay maybe a couple of things swiped from my Dad's antiques collection.  Anyway if you wanted to see it, you had to pay the 10-cent entry fee.  I sat out there curating my museum all weekend.  I made about 50-cents thanks to my Dad's friends who generously indulged my silly childish fantasies. "Look but don't touch", I told them!

But as the years dragged on and I became slightly more cynical and, some might say realistic, my dreams changed.  I went from Archaeologist to Hospital Administrator.  I remember looking it up in my tenth grade book of careers.  Imagine being the boss of all those people?  The perfect job for the ultimate Leo and also strangely ironic with the benefit of hindsight.  I'm not sure what happened to that idea but it went by the wayside, along with another girlish dream of becoming a Librarian.  Who doesn't love the smell of old musty books?  Just ignore the nerd-alert at this point please!

Alas, instead of slugging it out in trenches of Ancient Egypt, I ended up becoming a public accountant.  Horribly boring and dull but it suited me down to the ground.  As you know from this blog,  I love a good data based rant any day of the week, and I never met an argument I didn't like, so really public accounting was the perfect situation for me.  I loved getting into the tax code, researching case law, writing argumentative memorandums and going fisty-cuffs with the tax auditors.  And then there was financial statement preparation.  Ahhh....blissful days of tabulating, analyzing, and collating.  I really did love it.

Then amidst my dream career, came breast cancer.  And nothing like a good dose of breast cancer treatment to put a major dent in your career, and indeed the visions for the rest of your life.

Now that I'm dealing with metastatic breast cancer, and undergoing a rather grueling treatment regimen, I find that my career options are somewhat limited.  Of course there's blogging which I seem to have taken to like a CPA jacked up on international tax code loopholes. And then there's the career that I never would have envisioned for myself in a gazillion years.

GUINEA PIG.


You see in chemotherapy drug development the process goes something like this:

Preclinical Screening

• Animal and laboratory testing      
• Can take 10-15+ years
• ~40,000 chemicals screened each year; ~25% are selected for preclinical screening; ~10% are tested in phase I, human trials.

Phases of Clinical Trials:

• Phase I:  Specific aim is to determine toxicity and maximum tolerated dose.
• Phase II:  New drug is studied in a specific tumor type to determine response and further define toxicities.
• Phase III: New drug or treatment is compared to standard therapy to determine superiority.
• Phase IV: Post-marketing trials to further evaluate in larger numbers of patients.

From listening to prominent metastatic cancer researchers Pat Steeg and Danny Welch speak at the National Breast Cancer Coalition's recent conference, this is what I understood (and please readers feel free to chime in if my understanding is incorrect in any way).

I learned that chemotherapy drugs are almost always  developed using primary breast cancer tissues and then are tested in Phase I and II trials on metastatic cancer patients.  If the metastatic tumors remain fairly stable or shrink by a certain number, then the drug  moves to a randomized trial phase where "survival" is measured.  In the metastatic testing setting survival is measured in weeks or months and this is how "success" is defined.  From there the drug moves to next phase into the adjuvant setting and evaluated on a much larger group of patients.


It's only at the end of the drug development phase that any outright prevention of new metastasis is looked at and assessed.  BUT, for a drug to progress through the clinical trial phases, it must show that is has shrunk established metastatic tumors, NOT necessarily prevented new metastatic tumors.  In the words of Pat Steeg, "THIS IS STUPID!".    In the metastatic setting, the way the drug developments and approval phases are currently structured, drugs specifically designed to address metastasis, a biologically different animal to primary tumors, are destined to fail.  Because the aims of the drugs that the metastatic researchers like Danny and Pat are focusing on, are those that will induce metastatic tumor dormancy NOT necessarily shrink existing tumors.  Real prevention!

So just to recap.  My value to the drug development process right now, is as a guinea pig.  To have drugs tested on me, that are developed with the intention of treating earlier stage breast cancer.  Not specifically metastatic breast cancer.  The drugs may or may not work on me.  If they do work, most likely only for a finite period of time.    My outcome in treating my metastatic breast cancer is simply an (un)lucky by-product of the current drug development cycle.

Guinea pigs.  NOT GOOD ENOUGH.

I also learned from Pat Steeg that there IS a robust pipeline for secondary metastatic prevention drug trials.  But with the current structure for drug development and the associated incentives and funding costs, getting these drugs into clinical trials is a fight.  Besides bureaucratic red tape, the roadblocks to metastatic-specific drug development are immense.

We are entrenched in a breast cancer culture that favors research for primary and early stage breast cancer.  There is a dearth of metastatic breast cancer tissue available for research; most metastatic breast tumors are not biopsied because it's considered too invasive and unnecessary.  We don't know exactly how many people are living with metastatic disease as we are not officially counted anywhere.  How can the needs of our population be properly assessed and researched? Metastatic research is seen as to difficult and complex making funding grants hard to come by.   Big pharma must work to a business model to appease its shareholders, and metastatic cancer research is way down on the priority list because of the lead times and costs involved. And so the excuses pile up........

All of these roadblocks, yet around 30% of people receiving a breast cancer diagnosis are known to go on to develop metastatic disease(1).  And metastatic disease accounts for 90% of breast cancer mortality with around 40,000 deaths a year (2). And with less than 5% of cancer research funds spent globally on researching metastases (3), is it any wonder that, according to Danny Welch,  there are less than 1000 metastatic researchers worldwide?

How can we scream loudly enough that:

IF WE SOLVE THE RIDDLES OF METASTATIC BREAST CANCER THEN WE CAN ALMOST ELIMINATE MORTALITY FROM THIS DISEASE!

WHY THE ROADBLOCKS?

I'm not sure who coined the phrase first, but I've  been hearing it loud and clear from U.S. based metastatic breast cancer advocates like Musa Mayer of AdvancedBC.org, CJ Corneliussen-James  of MetaVivor and Ellen Moskowitz of Metastatic Breast Cancer Network.

What we need is this:

30% for 30%*

 

*30% (research funding)  for 30% (of the breast cancer population who will develop metastatic breast cancer)

Again I will quote Pat Steeg:  "Do we care enough to study mets?"

I certainly hope so, because I don't want to be an (angry) little guinea pig for the rest of my life. Well that's my girlish dream anyway.

(1) O'Shaughenssy, Oncologist 2005; 10(suppl 3):20-29
(2) Metastatic Breast Cancer Network
(3) J. Sleeman, P. Steeg, "Cancer metastasis as a therapeutic target", European Journal of Cancer 46 (2010) 1177-1180

No Awards Here

Last weekend I travelled to Washington D.C. to attend the National Breast Cancer Coalition's Advocacy Training Conference, along with over 800 other people interested in hearing more about the NBCC's bold mission to end breast cancer by 2020: "Breast Cancer Deadline 2020".

Can it be done?  Well the jury's still out on that question, but it's a start and we can't do any worse than where we already are. Click here to read  to read the NBCC's Breast Cancer Deadline 2020 publications,  including a baseline status report, their white paper on the mission, and a letter to scientists.  

This deadline represents a tangible goal to which this organization intends to be held accountable to.

In coming posts I will be sharing my reflections about the conference as well as other important information about things that we can all do to continue our efforts in helping to change the conversation about breast cancer, in order to bring about the paradigm shift that will be crucial to achieving the NBCC's goal of ending breast cancer by 2020.

So where does one start?


I was pondering this question, as I was on the train returning home and reading "Ending Breast Cancer: A Baseline Status Report".  Facts were jumping out at me and I began to feel overwhelmed. Here's a small sample.

90% of breast cancer deaths are due to metastasis. The incidence of women diagnosed with advanced breast cancer has not changed.  Rates of diagnosis of truly lethal disease have remained stable since 1975.  Mortality rates have not changed significantly. Forty thousand women and hundreds of men in the U.S. alone will die from breast cancer this year. The evidence of a mortality reduction from early detection is conflicting and still under question.  The efficacy of mammography as a screening tool remains a highly contentious issue.  Early detection is no guarantee that a later stage diagnosis can be prevented, nor that that a cancer will spread through metastasis at some later date.  Treatments to eradicate metastasis do no exist.  There is still SO much we don't know.

Lest I become too disheartened and simply fall into a heap crying "it's all too hard!" I decided to take a break from my reading, and go and hang out on Twitter for a bit.  Perhaps @BurbDoc could lighten my mood with his humorous rantings from #Suburbia.  Perhaps something like:

@BurbDoc

Suburban Physician

ACTUAL PATIENT QUOTE: "What do you mean no one prescribed quaaludes anymore?"

But it wasn't to be.  Instead I saw this:

Komen for the Cure (@komenforthecure)5/3/11 10:21 AM CALL FOR ENTRIES: Submit your loved one to be named Komen #GlobalRace Survivor / Co-Survivor of the Year by 5/8/11! http://bit.ly/mFegAO

Blood pressure rising, the banshee scream beginning to curdle, but of course I had to click through.....

Susan G. Komen for the Cure®, the global leader in the fight against breast cancer, celebrates survivorship and we want you to as well. Please describe in 750 words or less why you or someone you know should be the 2011 Susan G. Komen Global Race for the Cure® Survivor or Co-Survivor of the Year. The Co-Survivor category recognizes someone who has gone above and beyond in support of a breast cancer survivor. To be eligible for either award and to submit a nomination, you must be a registered participant for the 2011 Komen Global Race for the Cure. Remember, 750 words or less for either category. The winning pair, to be selected by the 2011 Susan G. Komen for the Cure Executive Survivor Committee Task Force, will have demonstrated the greatest impact on their community as well as the global spirit of survival. 

************ FULL BANSHEE SCREAM ************

So Komen wants us to "celebrate survivorship" by nominating a  "2011 Susan G. Komen Global Race for the Cure® Survivor".

I guess the forty thousand women and hundreds of men who died last year of breast cancer won't be eligible.  Because they clearly didn't survive, and I guess that's an important criteria in order to receive this accolade.

Apparently the lucky recipients of this award "will have demonstrated the greatest impact on their community as well as the global spirit of survival."  I'm not really sure what all this means, but I'm wagering that "greatest impact on their community" has something to do with how much money the winners raised for Komen, and that their "global spirit of survival" at least means they are not dead.

After entertaining myself for a good few train journey miles about the blatant hilarious ridiculousness of the very notion of a "Survivor of the Year" award, I was left with the following thought.

Imagine if we acknowledged the truth about breast cancer and paid as much attention to the DEAD,  as we do to celebrating the so-called achievements of the mainstream breast cancer movement at all those pink parties and pink events, and handing out Survivor of the Year awards to those who revel in the "global spirit of survival".

Maybe, just maybe "Breast Cancer Deadline 2020" could be achieved.

A picture of me paying attention to the truth.
There were no awards handed out at this conference.
(Also this is not a product placement for Ocean Spray OJ ;) )

*********************************************************************************
Today's post is dedicated to Sarah, aka The Carcinista, who passed away yesterday of metastatic ovarian cancer at the age of 39.  If my posts read as a bit snarky, I owe it all to Sarah, whom I shall always remember as The Queen of Snark (with a Message).  On one of her last comments on my blog, she described my snark as "delicious".  No Sarah, you,  my friend,  were delicious.  Your wit, humor, sensitivity, smarts, and downright courage in the face of a terrifying beast will be remembered always.  Another shining bright light in the cancer blogosphere went out with the loss of the beautiful Sarah.  RIP.

(For more information and resources on ovarian cancer, please see this guest post by The Carcinista)