Sunday, January 30, 2011

Komen By The Numbers: The Context of Research

Context: the parts of a discourse that surround a word or passage and can throw light on its meaning. 

Context is an important word, particularly within the cancer culture.  We hear those three little words; "You have cancer", and immediately we are thrown into a frightening void, where often the first battle is understanding the world into which we have just been forced.  After shedding our tears, and numbing ourselves to the shock and pain of it all, we take a deep breath and start asking the questions we are supposed to ask.  After we have figured out which questions we need to ask.  Soon we begin to understand this new context.  Our diagnosis, options for treatment, and how our lives will be irreparably changed. Context provides some comfort in the form of clarity, but we can't get there unless we ask the relevant questions.

It is with this in mind, that I continue my investigation into the activities of our nation's largest breast cancer fundraiser, Susan G. Komen for the Cure® ("Komen").  I still have questions.

In my recent essay, "Komen By The Numbers" , I analyzed the available audited financial statements for Komen for the six year-period for financial years ending March 31st, 2004 through 2009.  I calculated Komen's total Net Public Support and Revenue for that six-year period; $1.54 billion.  I then calculated the total allocations to Komen's "Program Services" for the same period.  Allocations were made in the following proportions, expressed as a percentage of total Net Public Support and Revenue: Research 25%; Education 35%; Screening 11%; and Treatment 6%.  The remaining 22% was used for Fundraising and Other Administrative Expenses.

I also investigated the types of research funded by Komen and determined that, according to information provided on their website, from 1982 to 2010 they have awarded research grants to the tune of about $491 million. Using the total research figure of $491 million and other ratios, I estimated that from 1982-2010, Komen has received some $2.1 billion in Net Public Support and Other Revenue. Types of research are expressed as a percentage of the $491 million:  Biology 33%; Treatment 22%; Early Detection 15%; Prevention 10%; Survivorship 9%; Etiology 8%; and Model Systems 3%.

In this essay, I drill a little deeper into Komen's Research program.

Research Growth

Komen's "Research Involvement" media sheet dated 10/29/09, (since replaced by a new media sheet in the last week entitled "Research Programs: Overview")  states;
"Since funding its first research grant in 1983, the organization’s commitment to research has grown at unprecedented rates."
Is it fair to say that Komen's research allocations have "grown at unprecedented rates?"  The best way to tell is to look at Komen's available audited financial data to see the changes that have occurred over time.

Here are the dollar amounts of Komen's Net Public Support and Revenue, compared to Program Services and Other Expenses allocations, from 2004 to 2009.

This chart tells us that Net Public Support and Revenue has steadily increased, from $147 million in 2004 to $331 million in 2009; growth of 125%.  The Education program has increased from $44 million in 2004 to $135 million in 2009; a significant growth of 206%.  By comparison, Research has grown from $39 million in 2004 to $70 million in 2009; growth of only 79%.  In terms of dollars, the Research program has clearly not increased as much as the Education program. Whereas a 79% growth rate has a nice ring to it, the actual dollars invested in Research compared to other expense categories does not support Komen's statement that it's Research program has "grown at unprecedented rates".

To determine which of Komen's programs have indeed grown at "unprecedented rates" it is important  to understand how each of the Program Services are allocated  when expressed as a percentage of the total Net Public Support and Revenue over a period of time.  The following chart tells a very different story.

From this perspective it becomes very clear that Komen's policy was to fund its Education program (pink line) at ever-increasing rates, with the sharpest increase occurring between 2006 and 2008. In 2004, 30% of Komen's Net Public Support and Revenue was used to fund its Education program.  By 2009,  this percentage allocation had risen to 41%.

By comparison, the percentage allocation to the Research program (navy blue line) has barely changed since 2004. In fact, it seems to be on a slight downward trajectory except for a blip in 2008.  In 2004 Komen allocated 27% to Research, and this dropped to 21% in 2009.  Over the six year-period,  total monies allocated to Research were only 25% of the total Net Public Support and Revenue. This does not indicate "unprecedented growth."

Research Commitment

Also in Komen's 2009 "Research Involvement" media sheet, the organization proudly states its commitment to research:
"In 1983, Komen invested in one research grant worth $28,000. Ten years later, the total had exploded to 21 grants worth $590,000, and 10 years after that, Komen distributed $21 million in research funds. This year, we’re providing researchers worldwide with $60 million."
Such statements are meaningless unless the context is understood.  How do these research amounts relate to the amount of Net Public Support and Revenue Komen earned in each of those years? Further, how do they compare to the amount spent on the Education program in those years?

Komen states that they are providing $60 million to research this year alone, which sounds like a lot of money, especially when compared to the $28,000 invested in 1983.   Komen's 2009-2010 financials are not yet available on their website. But if history is a guide, the organization probably earned in excess of the $331 million in Net Public Support and Revenue that it earned in 2009. Based on this estimate, a Research investment of $60 million would amount to about 18% of Net Public Support and Revenue.  When viewing the $60 million research allocation in the context of Komen's full financial situation, this investment sounds a lot less impressive.

Research Focus

Komen's 2009 "Research Involvement" media sheet states that the organization's research focus has shifted:
"Beginning in 2008, Komen’s chief scientific advisor, Dr. Eric P. Winer, and the organization’s Scientific Advisory Board initiated a strategic shift in the focus of Komen research to translational studies that would contribute to significant reductions in breast cancer mortality and/or incidence within the decade."   
Now for anybody who's not aware, "translational studies" refers to research that "...transforms scientific discoveries arising from laboratory, clinical, or population studies into clinical applications to reduce cancer incidence, morbidity, and mortality." (See National Cancer Institute for more information).

This all sounds quite promising, but what does it mean for Komen's Research program allocation? Since this new focus began in 2008, it may be too early to draw any conclusions from the financials, except to note that the 21% allocated to the Research program in 2009 is lower than each of the five years previously.  Is this what Komen really means when they talk about a "strategic shift" in their research policy? That there will be less money allocated to Research even as Net Public Support and Revenue continues to increase?  I certainly hope not, but I'll be watching the numbers closely as they become available.


How does all of this evidence support Komen's statement that it's Research program has "grown at unprecedented rates"?  It's all in the context.

In performing these analyses, it's been my intention to answer the many questions that I have about Komen's policies and activities.  There is too much money at stake, and there too many clocks ticking for the women who are currently living with breast cancer, and too many women yet to be diagnosed.

If I invested in the shares of a public company, it would be within my rights, as a shareholder, to question that company if I had concerns about their operations and how my investment was being spent.  As a past donor to Komen, and as someone living with metastatic breast cancer, I am a stakeholder for whom the Komen organization looms large in the fight to end breast cancer. I maintain my right to ask reasonable questions of the Komen organization.  I need an investment in a cure, and sooner rather than later.  This is my context.

Monday, January 24, 2011

Komen By The Numbers

Living with metastatic breast cancer is a bit like playing an evil game of Whack-A-Mole. Chemotherapy, at this point, is more art than science.  Tumors come up and tumors go down and you never quite know where they're going to strike next.  You just keep whacking those pesky tumors and if new ones come up, you whack 'em again, and again, and again.  You just hope that you have enough chemotherapy hammers in your arsenal to be able to keep whackin' 'em before you lose the game.

In recent months, I've been following with interest the debate in the blogosphere, over the Susan G. Komen for the Cure® ("Komen") lawsuits with respect to apparent trademark violations over other charities using the phrase "for the Cure". Komen argues that trademarking the phrase, and protecting that trademark through legal strategies, is a form of stewardship of donor funds.  Many others see it differently. Indeed, the debate itself is also starting to feel like a game of Whack-A-Mole because as one question comes up, it's debated by some and whacked by others as Komen offers a superficial response.  In turn, the organization's official statements cause more questions to come up.  Whack! And so the game goes on.

If you need to get up to speed on where the debate currently stands, I recommend reading the following articles by Gayle Sulik, author of Pink Ribbon Blues, which also contain links to other news stories and essays on the topic, along with official responses by Komen.
Also check out The Accidental Amazon's recent article, "Hubris for The Cure".

There's no question in my mind that Komen has, and continues to engage in good works, but I fear their stated mission, and their actions are starting to get a little confused.    On their website, Komen clearly states that is their mission "to end breast cancer forever".  This mission ties in nicely with the organization's recent name change to Susan G. Komen for the Cure®. Straight-forward. For. The. Cure.

As a person living with metastatic breast cancer, I clearly have a vested interest in Komen fulfilling their mission; to end breast cancer forever, and more specifically to find me a cure.  But is it really that simple? Do Komen's activities actually support this mission?

In considering this question, I decided to go back to my training as a public accountant, a career that spanned some fifteen years, before I was forced to give it up to focus on my health and on-going treatment for breast cancer.  Financial analysis is my thing.

Audited financial statements are available on the Komen website covering years ended March 31st 2004 through 2009. After some pretty intense number-crunching, I was able to get a clearer picture of how Komen allocates it's donor funds and other revenue, and the amount and type of research they have invested in since they opened their doors in 1982.

First, as a non-profit organization, Komen's activities are divided into four major Program Services to which donor funds are allocated: (1) Research,  (2) Education, (3) Screening and (4) Treatment. The remaining funds go towards administrative and fundraising expenses.

From 2004 to 2009, Komen allocated a total of $1.54 Billion of "Net Public Support and Revenue" of in the following categories: Education 36%; Research 25%, Administration and Fundraising Expenses 22%; Screening 11%, and Treatment 6%.  See pie chart below.

Now it's a question of opinion as to how one might define activities that could possibly result in a "cure" for breast cancer, and it's a question that was raised by blogger Alicia Staley in her posts, "How do you define the Cure for Cancer?", and "Lawsuits for the Cure".  For me and the people I know who are in treatment for breast cancer, we understand a "cure" for our disease to mean that we will be completely healed and never have to worry about breast cancer invading our lives ever again.

However, Andrea Rader, corporate spokesperson for Komen, stated in response to Alicia's Staley's question;
"Research is just one piece of delivering cures for cancer. Education is critical: even today, many women don’t know they’re at risk for breast cancer, or they continue to believe myths like underwire bras cause cancer (they don't)." 
From this statement, Komen seems to be saying that "cures" for cancer result from other activities, in addition to research.  I must have missed that memo.  Education, screening and treatment won't "cure" my cancer.  Sure, by being "educated" I might be able to find out more about my particular type of breast cancer. By being "screened" I might be able to see if my cancer has spread.  By being "treated" I might be able to keep the cancer I already have under control.  But will any of these activities result in me being cured? No. The only hope that my cancer will be cured, is by research and research alone. The only way that breast cancer will be prevented, given that many of those diagnosed have none of the known risk factors, is through research.  Indeed, the only way we can "end breast cancer forever" is with research.  Education, screening and treatment activities deal with finding and treating cancers we already have, not curing them and not ending breast cancer now or forever.  Period.

Spending anything less than the bulk of its resources on research, clearly does not support Komen's mission of ending breast cancer forever.

In addition to the allocation of funds to other activities besides research, I analyzed how Komen allocates funds within the research category itself.  Of the total $1.5 billion raised from 2004-2009, Komen allocated $391 million to their Research program.  It costs money to run a research program, in this case $33 million, so $357 million of actual research awards and grants were made.  This means that from 2004-2009, Komen only spent 23% of "Net Public Support and Revenue" on actual research, down from the 25% allocated to the research program category.

Analyzing how the research dollars were actually spent and what types of research have been funded was more difficult.   Although some of the information is available on the Komen website, the reports provided require the reader to click on a map and go through each country/U.S. state to calculate total expenditures by research type.  Here's what I found.
Code's Defined by International Cancer Research Portfolio
(Click here for detailed definitions)

Since it's beginnings in 1982, through to 2010, according to its website research map, Komen has invested some $491 million in awards and grants to researchers in the U.S. and around the world. This sounds like a lot money.  However, to put this number in context it's necessary to compare it to "Net Public Support and Revenue" for the same period, which was not available on Komen's website.  From an accounting standpoint, one could calculate an estimate of total "Net Public Support and Revenue", using the average figure of 23% allocated to actual research, calculated from the 2004-2009 audited financial statements.

Estimated Total Net Public Support and Revenue for 1982-2010  

                                                   = Total Research Awards ($491 M)               =    $2.1 Billion
                                                   Average % Research Allocation (23%)

Thus Komen's total "Net Public Support and Revenue"for 1982-2010 would total somewhere in the order of $2.1 billion.  Now I have no way of verifying this number, since Komen does not provide the revenue data for the years prior to 2004, but  Komen's research media sheet, and factoring in operations costs, suggests that my estimates appear to be reasonable;
"Susan G. Komen for the Cure® is the global leader in funding life-saving breast cancer research. Komen for the Cure has invested nearly $1.5 billion in research and community health programs, nearly $465 million of which has gone directly to research. Since funding its first research grant in 1983, the organization’s commitment to research has grown at unprecedented rates."  
Of the estimated total public support and revenue of $2.1 billion from 1982-2010, Komen spent only $491 million on research.  This means the remaining estimated $1.6 billion was spent on everything else.  Does this seem like a commitment to "ending breast cancer forever"?

I have to wonder how much further we'd be along on the breast cancer research front, had Komen been more generous with their research allocation over the years.  At this point it seems prudent to point out that I am not alone in questioning the tactics of this country's breast cancer fundraisers and research protocols.  The National Breast Cancer Coalition states on their website;
"Hundreds of thousands of lost lives justifiably mock our acceptance of the fragmented, siloed, no-end-in-sight strategy currently at work. We couldn’t possibly do worse. The question we ought to be asking ourselves is, “How do we succeed, and what must we do differently in order to?” Over the past eighteen years, despite all of the funding and all of the walks and runs and gala dinners, annual breast cancer deaths in the U.S. have barely budged. They were close to 40,000 then, and they’re close to 40,000 now. If this is our definition of success, we need a new one."
Further they say;
"It’s time to move beyond awareness to action. It’s time to peel back the pink to see what’s really happening in breast cancer research, treatment, prevention and cure." 
All of this conduct by the United State's largest breast cancer fundraiser is starting to feel a bit unbecoming of a charitable organization. I can only hope that going forward, Komen do indeed honor their "organization’s commitment to research" and that their research allocation does grow "at unprecedented rates", as they state in their research media sheet.

Let's end this game of Whack-A-Mole. Change tactics and allocate more money to breast cancer research.  Perhaps then, we can all trust that Komen really is "for the Cure".

[EDITORS NOTE: Since publishing this article, the Komen research media sheet that I refer to in this essay has been replaced by an updated version.  A copy of the original version dated 10/29/09 is available by clicking here.  The new version, published by Komen during the week of 1/24/11, is available by clicking here.]

Friday, January 21, 2011

How Being Sarah Came To Be

Through writing this blog, I've had the pleasure of "virtually" meeting so many incredibly talented, intelligent and interesting women.   Many of these women are also bloggers, and we enjoy flitting around cyberspace and visiting each other's sites, catching up on the latest news, engaging in lively debates, talking about life's highs and lows, appreciating and commenting on each other's writings, despite completely different styles and perspectives, and providing a wonderfully powerful network of support, helping each of us make sense of our cancer ordeals.  Many others visit our sites simply to read, reflect, and perhaps to remind themselves that they are not alone with their thoughts and struggles with this disease.

Indeed Chemobabe just published an amazing post on the power of this virtual community in "Over Our Heads" where she says;
"I cannot overstate the value of having a community of people who understand life under the dangling sword. Yet it’s hard to find companions on this journey. Typical support groups are not a match for me because I am unusually young to have this disease. Other women have different reasons for feeling alone."
One of these women whom I've been able to connect with is Sarah Horton, who writes a blog at Being Sarah .  Sarah has impressed me with the way she is able to articulate and channel her anger at having breast cancer, but also with the beautiful way in which she writes about life's simple pleasures, reminding us of the importance of finding a balance in coping with this hand that we have been dealt.

The other thing that struck me about Sarah, is that only three years after being diagnosed with breast cancer she achieved the tremendous feat of publishing her book, "Being Sarah", a narrative about enduring breast cancer, her anger at having developed it in the first place, her views on the politics of the breast cancer culture, balanced with how she has continued to live her life in the face of this adverse circumstance.

Recalling the ordeal of my first round of treatment back in 2004, after my initial diagnosis, all I can remember is how overwhelmed I felt; the constant struggle against the side-effects of chemotherapy, as well as the physical debilitation of all those surgeries and radiation.  But mostly, I just remember the constant mind-numbing fatigue, and the daily struggle of just getting out of bed and putting on my clothes to be ready to face a new day.  I barely knew my own name.

This begs the question as to how on earth does anybody endure breast cancer treatment AND write a book on top of it all? My mind boggles in thinking about this, which is why I was so interested to hear more about how Sarah was able to accomplish this incredible feat.

Please click here to read 'The Story of Being Sarah", published via my sister blog, Can-Do Women.

Tuesday, January 18, 2011

Selling Hope

There's been a lot of talk recently in the breast cancer blogosphere about language and how it's used in the breast cancer culture.  Uneasy Pink's post on "Word Matters", Being Sarah with her post, "What's the Word?", and The Accidental Amazon's post, "A Lump By Any Other Name" provided excellent commentary on the issue, and generated much discussion amongst readers.

Well, I'd like to throw one more word out there as the subject of today's post.

Yes it's a tattoo

  1. to desire with expectation of obtainment
  2. to expect with confidence
In the cancer culture, "hope" is a word that carries a lot of power and emotion when uttered in the context of cancer patients and their desire to be healed from their disease by the miracle cure that everyone wants to believe will be forthcoming within their lifetime. 

And in the breast cancer culture particularly, "hope" is a concept that holds plenty of marketing cache' for the savvy corporations looking to make a buck off society's hope for a world free of breast cancer.

You can purchase a "Facets of Hope Breast Cancer Awareness Bracelet" for the bargain price of $99 where;
"Companionship, courage and love today; hope for a cure tomorrow. That's the heartfelt message that this Facets of Hope crystal bracelet expresses to everyone, whenever you wear it to show your compassion and support for those who face the challenges of breast cancer."
Except just be sure to read the attached warning label which, although legally only required by the State of California, should probably be read by anyone  considering buying this bracelet.
"California Proposition 65 WARNING for lead crystal: To enhance optical clarity, the crystal in this product contains lead, a chemical substance known to the State of California to cause cancer and birth defects or other reproductive harm."   
 My hope is that nobody buys this ridiculous piece of pink-ribbon schlock, since it's production might actually contribute to increasing cancer incidence, and purchasing it doesn't really feed my hopes that we'll have a "cure tomorrow".

In the U.S., Susan G. Komen for the Cure®, the nation's largest breast cancer fundraiser, has a commercially vested interest in this concept of "hope", as do their corporate partners, evidenced by the following examples of campaigns undertaken in recent years.  We've seen Komen trademark the phrase "For The Cure" and enforce it's legal rights over anyone else deigning to use such phrasing in their fundraising efforts.  I wonder if we're going to see a similar scenario unfold for the word "hope" when used in the context of breast cancer?

DOVE® Chocolate: Promises of Hope: 
Susan G. Komen for the Cure is proud to be the beneficiary of DOVE® Chocolate Promises of Hope™.  DOVE® Chocolate Promises of Hope™ feature messages of hope and inspirations written by breast cancer survivors. These messages capture the strength, compassion and voice of women who have overcome the battle of their lives.
 MMG Corporation
Susan G. Komen for the Cure® is proud to partner with MMG Corporation for their “Knots for Hope” campaign to support the vision of a world without breast cancer. The Knots for Hope collection of 100 percent silk ties featuring the Susan G. Komen for the Cure signature running ribbon logo will be available at,  Belk Stores, Boscov's, Lord & Taylor, Macy's, Nexcom, Peebles, Stein Mart, Veteran's Canteen, and select TJ Maxx and Marshall’s stores nationwide. 
 Smiles of Hope ® toothbrush
Susan G. Komen for the Cure is pleased to partner with Cause Care, LLC in the breast cancer movement.  From August 15, 2008 through August 15, 2010, Cause Care will sell a specially designed Smiles of Hope ® toothbrush through various retailers nationwide to benefit Komen for the Cure. 
 Susan G. Komen for the Cure®, Seattle branch, is also the recipient of a portion of proceeds from sales of the Walther P-22 Hope Edition gun from Discount Gun Sales LLC in recognition of Breast Cancer Awareness Month. Yes that's right, a "Hope" gun.
Does this gun accurately represent 
your hopes for a world free of breast cancer? 
It just makes me hope for better gun control laws in this country.
The Hope Bear
And the slick marketing campaigns go on ad nauseum with many, many examples to be found, where "hope" is the primary focus of campaigns designed to tug on the heartstrings of ordinary citizens to buy products that support the desires of breast cancer patients everywhere to receive the miracle of a cure.  The message is simple.  If you buy this product, then you invest in "hope", and what better way to show you care about breast cancer?  This is all very nice, but does the average person really know where their dollars are going when they cuddle that Hope bear, drink that Hope wine, or shoot that Hope gun?  They hope that their dollars are going to the right place, but is that enough?

"Hope" as a marketing strategy is not limited to corporate America alone.

The Cancer Treatment Centers of America, a network of cancer hospitals, actually have a website devoted entirely to this concept of "hope" called "The Journey of Hope", an online resource for cancer patients and their families seeking spiritual support.  Indeed, you can even train to be a "Hope Navigator"  so that.... "As you minister to cancer patients and their families, you help them find hope for their journey … hope spiritually, mentally, emotionally and physically. Hope for a successful battle against cancer."

The American Cancer Society offers their Hope Lodge service which provides free accommodation to cancer patients and their families and "is a place created to ease the burden of cancer treatment - a place where we give hope a home."  In addition, they have a charity campaign called "Give Hope" where "we all have reason to hope for a world with less cancer and more birthdays".

But what does "hope" really look like for someone dealing with a cancer diagnosis? Hope that the cancer is not too advanced and responds to treatment? Hope that the cancer doesn't come back?  Hope that we get to live out our dreams? Hope for a miracle cure? Hope that future generations won't have to worry about developing cancer? Hope that we won't die a painful and premature death?

Hope, it seems, is everywhere, especially in the breast cancer culture.  But is it really? Or do we just hide behind a mountain of pink-ribbon laden merchandise oozing syrupy hopeful messages, trusting that our purchases and donations will make all the difference and that corporate and benevolent America will deliver on the hopes of every breast cancer patient? Or are we being sold on false hope?  Perhaps,  the reality is that we are just hoping against hope, a state in which we hope without any basis for expecting fulfillment, because if we don't have hope then what else is there?

There are so many dynamics to "hope"in the context of cancer and yet what evidence do we really have to think that "hope" alone will save us?  It won't.  It's not enough to simply hope.  What we must to do is keep critically questioning.  Why does the incidence of cancer keep rising unchecked? Why have cancer mortality rates remain largely unchanged for decades? Where is the cancer research focus? Where are all those cancer fundraising dollars really going? Are we simply pouring money into more cancer awareness and education campaigns at the expense of funding potentially game-changing cancer research?   When will the government make cancer research funding a top priority? When will governments realize, that in setting law and policy, they can address key issues that will result in cancer prevention? What else can we be doing to aid the fight?

And what about my hope? As someone living with metastatic breast cancer, the statistics of my disease are frightening and offer very little in terms of "hope";

(Statistical information sourced from MetaVivor and Metastatic Breast Cancer Network).
  • It's estimated there are currently 162,000 women in the U.S. living with metastatic breast cancer 
  • 90% of cancer deaths result from stage IV cancer, but only 2% of research funds are devoted to stage IV cancer research.
  • In developed countries, nearly 30% of women with early stage breast will go on to develop metastatic breast cancer
  • Only 27% of patients whose breast cancer has spread to other organs survive five years
  • Median survival after diagnosis is three years with no statistically significant improvement in the past twenty years
  • The number of Americans who lose their lives to metastatic breast cancer is about 40,000 per year, a number that has changed little in decades.
  • Far too many patients must face their challenges with little to no support. Most programs focus on wellness and recovery, avoiding any reference to stage IV. 
  • Breast cancer is the most common kind of cancer in women, and the leading cause of cancer death for women worldwide, with nearly half a million deaths every year.
So where do my hopes lie?
  • I hope that I can continue to defy the grim statistics that come with my disease.
  • I hope that, sooner rather than later, metastatic cancer will be given the research priority and funding that it needs, so that we too stand a chance to live long and productive lives.
  • I hope that we will move away from cause-based product marketing and consumerism that has become so ingrained in our collective psyche', so that we can be sure that every dollar we invest in "hope" for a cancer-free world is directed to meaningful and potentially life-saving research.
  • I hope that I can expect positive change in the way we confront cancer to happen within my lifetime.  
  • I hope that I can still have real hope.

Thursday, January 13, 2011

Doing My Bit to Keep Cancer Care Costs High

I just got back from my first chemotherapy session of 2011.  Going to the oncologist's office is always a barrel of laughs, but I couldn't help noticing just how many people were there today, all clamoring to do their bit in contributing to high cancer care costs in this country.  It really seemed like the entire state of New Jersey had cancer and they were all getting treatment today.  Times this unscientific observation with every other oncology office in the nation and you could be forgiven for thinking that the cancer situation in the United States has gotten a little bit out of control.

Indeed, there's a new study just released by the Journal of the National Cancer Institute, which says that cancer care costs in the United States, could jump to as high as $207 billion by 2020, representing a roughly 66% increase from current cost levels.  According to the the study,  the highest increases in costs are predicted for breast cancer (up 32%) and prostate cancer (up 42%).  Breast cancer is predicted to have the highest cost of about $20.5 billion because of the large number of women who will be living with the disease.

So let's just get this straight.  Researchers at the National Cancer Institute have produced a cost model that appears to make no assumptions about the possibility of the incidences of cancer decreasing in the U.S.  Rather,  the situation looks even more grim than it does today.  The model simply says that more people are going to get cancer and treatments are going to cost a whole lot more than they do now.  And it's going to be breast cancer for the ladies and prostate cancer for men. Now there's a comforting thought.  With all the money that is being raised to supposedly combat breast cancer, and the statistics predict it's still on the increase?  These statistics are partially explained by an aging population, but this can't be the only factor.  Is it because we are diagnosing and treating more cancers, than actually need to be treated? Are there environmental factors at play causing more people to develop certain kinds of cancers? And what do the NCI researchers know about current research protocols that lead them to make such pessimistic inherent assumptions about the progress of cancer research in the next ten to twenty years?

The authors conclude that;
".....rising health-care costs represent a central challenge for both the federal government and the private sector." 
A challenge to the private sector? Really?  After reviewing this study, I'm sure there are some pharmaceutical/cancer industry executives popping a bottle of bubbly and breaking out the cigars as we speak.  Because clearly we're assuming that cancer isn't going anywhere, and more and more people are going to develop it.  Longer-term survival rates brought about by oncology drugs that simply prolong a patients life (without regard to quality), rather than offering a cure, just means longer-term profitable annuities for the pharmaceutical companies.  And don't even get me started on the profits the diagnostic and screening industries stand to make with all these new cancer victims.  Suffice to say, I recommend buying any and all cancer industry stocks now, although whether you'll live long enough to cash in is another matter entirely.

The NCI researchers also conclude that;
"The estimates and projections reported in this article may be particularly useful for policy makers for understanding the future burden of cancer care and for prioritizing future resources on cancer research, treatment, and prevention."
Well no duh Einsteins!  If the government makes cancer funding a priority then we might stand some chance of eradicating cancer for good.  But can this really happen and is the $6 billion pledged by the Obama administration to the National Cancer Institute enough, especially when you consider that according to the NCI "over the next 20 years, the number of new U.S. cancer cases will increase by 45 percent; cases among minorities will double, and cancer in our senior population will increase by 67 percent."

In a recent Huffington Post article by financial columnist, Don McNay, "Jimmy V, Elizabeth, Aretha and The Economics of Cancer", commented;

"We declared war on cancer 40 years ago. Like many recent wars, we are leaving our cancer troops under-funded, without the kind of support they need. We have become a nation where our leaders can throw billions at places like Goldman Sachs, which does nothing to touch the lives of average Americans, but underfund the war against cancer, which touches almost every American family."
Further, he writes;
"Curing cancer sounds mind-boggling. Just like spending trillions of dollars in bailouts sounds mind-boggling.
It's all a matter of attitude, priority and focus. The focus needs to be on cancer on Main Street, not investment bankers on Wall Street, Germany and Switzerland."

Unfortunately, my belief is that the fight to end this disease comes down to a simple question of economics. As I commented on McNay's article:
"If all the people afflicted with cancer were magically cured, with no further treatment required, and were able to fully recover enough to go back to full-time work, would the commensurate increase in individual wealth, federal/state income taxes and the country’s overall productivity be enough to more than offset the economic effects of the disappearance of the "cancer industry"? If the answer is yes then we might have a chance at getting somewhere in the fight to eradicate cancer for good. I believe it comes down to a question of economic incentive. Incremental drugs that result in "management" of the disease are profitable annuities for the manufacturers. Drugs that result in total eradication or other policy actions that result in cancer prevention are simply not economically viable options to our for-profit health care industry and other key stakeholders."
Cancer in this country is now big business. Especially breast cancer, as we have seen with the recent trademark turf wars involving the nation's largest breast cancer fundraiser,  Susan G. Komen for the Cure®, the questionable pink-ribbon fundraising partnerships with corporate America like Kentucky Fried Chicken's Buckets for the Cure campaign,   and corporations for whom a pink-ribbon based marketing strategy is now a legitimate source of sales and profits thinly disguised as corporate altruism, it's no wonder that we don't seem to be able to move the fight forward to eradicate breast cancer.  As a capitalistic society, why would we unless there is a real economic incentive?

With the cancer care industry standing to make potentially $207 billion in revenue over the next ten years,  does the $6 billion pledged to the NCI by the government seem like it's enough?  I'm no economist, but I would say it's hardly a drop in the bucket.

Monday, January 10, 2011

Preserving our Digital Legacy

In my recent post "Confronting Tragedy in The Age of Social Media",  I discussed the possibility that our blogs, Facebook pages and Twitter feeds, may some day become our opuses, ensuring that our voices will continue to be heard, in perpetuity, by future generations to come.  

I want to revisit that assertion,  and highlight a fundamentally flawed assumption in my thinking that our digital selves will have an infinite life.  In fact, this is only true, so long as our relatives deign to keep access to our online persona available for public consumption, and that whatever corporate entity is hosting our digital selves, remains in business, and has a financial interest in keeping access to our accounts open and free.  

Now that's a lot of what-if's to think about and it causes me to pose an extremely important question:  

What will really happen to our blogs etc., once we are gone ?

Indeed, it's a question that constantly haunts Gudrun Kemper, a regular reader from Germany, whom I've had the pleasure of virtually meeting via this blog.  Gudrun, an extremely accomplished woman and one of the founders of Breast Cancer Action Germany, is also a librarian, a published author of  "Jede Neunte" (Each Ninth), a book detailing and recording the breast cancer experiences of twenty-eight German women at the beginning of this century,  a member of the board in Arbeitskreis Frauengesundheit (Working Group Women Health, the independent women health organization in Germany) and a member of Netzwerk Frauengesundheit Berlin (Berlin Women Health Network).

Gudrun wonders what will happen to all of our blogs when we are gone without a permanent guaranteed home.  In Gudrun's view, the online world is now where history is being written, and this is particularly true in the way that women now go about recording their cancer experiences.  There is a vast volume of material out there in cyber-space being written everyday, that represents an important piece of the collective cancer experience and memory, and we are in real danger of losing all of it, if we don't pay more attention to this digital preservation question now.

By sheer coincidence, as Gudrun and I were discussing this very issue of digital archiving over the email this past week, the New York Times ran a feature article over the weekend called "Things To Do In Cyberspace When You're Dead"by Rob Walker, who raises concerns over what happens to our digital persona and body of work after we have gone.
"By and large, the major companies that enable our Web-articulated selves have vague policies about the fate of our digital after-lives, or no policies at all"
The article notes further that;
"But increasingly we're not leaving a record of life by culling and stowing away physical journals or shoeboxes of letters and photographs for heirs or the future.  Instead we are collectively, busy producing fresh masses of life-affirming digital stuff:...."
Gudrun worries that if we leave the responsibility of archiving our blogs to the mercy of commercial corporate web hosting services, we may find our blogs housed in an on-line repository exploited by advertisers for things like oncology drugs, pink-ribbon paraphernalia or other cancer-related services and merchandise.  An abhorrent nightmare for many cancer bloggers, including this one, who often rail about the evils of the profit-seeking opportunists who feed off the cancer industry.

What we need and what is echoed in the New York Times article by pioneering blogger, Dave Winer, who terms this issue of online content preservation as "future-safing" is;
"an endowment, a foundation with a long-term charter, that can take over the administration of a Web presence as a trust - before the author dies."
In the U.S. this kind of a place might look like The Library of Congress which has been active in creating web archives around specific events (click here to see current web archive projects), although the collection is clearly in its infancy.   Another possible candidate may be an organization like Internet Archive, an American non-profit that was founded with the sole purpose of building an Internet library, and also has begun to post web archive collections.  Or would the National Women's History Museum be interested in preserving our voices ?  Clearly the problems that each of these institutions face in making web content preservation a priority are the huge volumes of global content that currently exist, and the commensurate funding and resources needed to make this kind of preservation work feasible.  But at least it's a start.

Think about it this way.  If every letter and every story that was ever written about breast cancer in the 1700's was preserved and available to be read, would you be interested in such a collection?  Would you think it important to save those women's records from three hundred years ago?  Fast forward to two hundred years from now, and I'll wager that our blogs become as important as those 18th century letters and stories.

So what can we do about this?  Gudrun and I would like to put this question out to you in the online community.  What do you think?  Have you heard of any projects aimed at preserving our cancer blogs? What would such a global online cancer blog repository look like?  What would be some of the important features? Accessible by anyone? Searchable by cancer-type, by country, by symptoms, by issue?  Who should have responsibility for housing this digital warehouse?  Should we trust such an endeavor to commercial concerns, or should it only be housed by a non-profit organization? Where would the funding come from?

Obviously there are many, many questions to think about, in positing such a lofty project, but I would like to thank and congratulate Gudrun for being the "Big-Thinker" with this issue.  It's not something that I'd ever considered, but since talking to her, I realize the importance of this question of preserving our digital legacy, and that there is no time to waste.  We must take responsibility for this now if we are to ensure that our voices will continue to be heard.

Please do take a couple of minutes to share your thoughts on this important issue.  What do you think?

Sunday, January 9, 2011

How Are You Feeling?

Here I am back to blogging with a vengeance after what can only be described as the worst vacation ever.  My hubby and I had slunk off for a week in a warmer climate, which at this time of year, put us half-way around the world.  We landed on Monday, and by Tuesday I was laid up in bed with a serious fever and a chest infection the likes of which my immune system had never seen before.

Similar size to the bag-o-drugs
I was prescribed on my vacation
A consultation with the hotel medical team, a butt-load of injections, and a shopping bag full of drugs, and I was at least on the road to recovery, but not quick enough to be able to enjoy our little taste of summer.  Suffice to say, I only managed to leave the hotel room on our last day there, so I was only able to soak up some rays for a couple of hours, until it was time to repack our bags (or not, in my case, since I barely got out of my bed shirt) and head back home to the freezer.

So with all that said, today I am still quite under-the-weather and still feeling somewhat irritated with life, the universe and my battered immune system, which doesn't seem to be able to protect me as well as it used to from all of these little nasties.  But enough with feeling sorry for myself !  Here's what I'm irked about today.

I had an email today from an old friend, whom I haven't seen in at least a few years, although we've traded the odd greeting over Facebook.  So she sends me this email that basically says, "Hi. How are you feeling ?  I keep up with your news via Paula (a mutual friend). Hope to hear from your soon.  Love X."

There's a few things about the nature of this email that ticked me off, so strap yourselves in, here's my first real rant for 2011.

1.  "How are you feeling?":  Why does this question have to always be the lead-in to conversations with me? It irritates the hell out of me. I could understand it if you're my doctor, then this seems like a reasonable question.  I could also understand you're wanting to know if I was lying horizontal in a bed, with a fever of 103, and a death-rattle in my chest worthy of a serious emphysema diagnosis.  Oh wait, that was me this week, but it's not me usually, is the point I want to make.

I just don't know how I'm supposed to answer this question.  I mean what is it that you want to hear when you ask me that ?  Do you really want a run-down of my entire medical file, or do you just want to hear me say "good, good" so you can feel okay about the rest of our conversation and we won't have to go THERE.  Christopher Hitchens, columnist for Vanity Fair, deigns sometimes to simply answer "I seem to have cancer today". (See his article, Miss Manners And the Big C).  I usually just turn it around, by asking the other person how they're feeling.

Someone in my family recently said to me that many people struggle with what to actually say to me as they don't know, and they're afraid of saying the wrong thing.  The problem with this kind of an attitude, is that it usually translates into saying nothing to me at all, and that's not right.  I've always tried to be open about what is going on with me, but I don't feel the need to open all my conversations by talking about my cancer.  So why should you feel the need to either ? However, I can certainly understand if you have questions, so how about something like this?

"Hi.  What have you been up to ? *talk for a good 5-minutes or so on any topic of your choosing* then feel free to throw in, "So how's your treatment going?" or "How's things with you these days?". You see by this time, you've indicated that you're really interested in hearing about what's going on with me on both the normal life-in-general front and the cancer-front.  And if I'm in the mood to talk about the cancer-front, then I'll tell you and I'll be perfectly happy to answer any questions you might have.  If I'm not in the mood to talk about it, I might say something like "Hey, do you mind if we don't talk about this right now, but I'd be happy to do it another time".  And hopefully because you know me so well, you'll respect that, and we can just get on with it.  The thing is, I don't hold the key to the all the rules of cancer etiquette just because I have it.  But I am still a person with feelings, and I'm not a walking medical file or oddity and nor should this be the only thing that we have to talk about.

2. "I keep up with your news via our mutual friend".  So why are you bothering to talk with me at all ?

3. "Hope to hear from you soon".  So you send me a three-line email and now you are expecting me to send you a full accounting of what's going on with me without even bothering to tell me what's going on with you?  I don't think so.  Friendship is a two-way street.  You get a bit about me, if I get a bit about you.  Pretty simple, right ?

All I'm saying is just have a normal conversation with me.  If you want to know about what's going on with the cancer, then just ask.  But don't be offended if I decline to answer, or don't be shocked if you get more information than you bargained for.  Most of all,  just treat me normally.  It's not required that you ask me how I'm feeling every time you talk to me.  

Ask me how I'm feeling today though, and the answer is, "grumpy!"

Saturday, January 1, 2011

The Can-Do Spirit

"You can do this.  You'll get through this".  These words, gently spoken to me by my oncologist, Dr WW, when I was first diagnosed in 2004 and facing the prospect of life-altering surgeries and a debilitating chemotherapy and treatment regimen.   And DrWW has continued to utter these words as a way of coaxing me through, each time we have another crisis, and each time we stare down yet another frightening round of scans and changes in chemotherapy treatment.

What's interesting to me,  is that for some reason, this simple mantra of "I can do this", has stayed with me and has really sustained me even through the most difficult of times.  I continue to be truly amazed by what the human body and psyche is able to endure in the face of medical catastrophe.  And whilst many people are quick to label this kind of coping mechanism as brave, or having a fighting spirit or simply strength of character,  to me it's just getting through a horrendous experience the best way I know how.  There's nothing brave about it.  It just is what it is.  And wouldn't everybody do the same if they were in my shoes?  You just do it, and you get through it.  Somehow.

In dealing with my own cancer nightmare, I have become a voracious reader of all things breast cancer.  I've been particularly interested in the history of breast cancer, and recently read an absorbing book by James S.Olson, entitled Bathsheba's Breast: Women Cancer and History. After finishing this book, I was struck by two things.  Firstly, by how long the world has known about breast cancer, apparently since ancient Egyptian times, and yet how little we still know about breast cancer, even today.  And secondly, I was completely moved by the horrifying ordeals that women have endured, and continue to endure, in dealing with the disease itself and the treatments inflicted on them by the medical establishment of the particular time. Indeed, their stories are traumatic and unbearably gruesome to the reader, but in the end they remind us of the lengths women have always been prepared to go to in the hope for a cure from this terrible disease.

Anne of Austria (b.1601- d.1666)
Mastectomy in 1655
Consider Anne of Austria, the wife of Louis XIII, who died of breast cancer in 1666 in France, at the age of sixty-five years old.  She had first noticed a lump in her breast in 1663, but chose to ignore it, probably to avoid the ghastly and daunting breast cancer treatment options of that time which included surgical excisions, bleedings and purging of the supposed cancer-causing black bile which was part of the popular Humoral medical theory of the day.  In 1664, after the pain of the tumor became intolerable and she became sicker, Anne consulted her physicians.  The doctors realized that surgery was not possible as the tumor had spread to under her arm, and so they began a series of treatments designed to keep her alive.  Bleedings, daily enemas, purges, herbal poultices and even daily surgical removal of necrotic tissue became Anne's reality.  But it was all to no avail and after her punishing ordeal, Anne passed away in 1666.

18th century mastectomy instruments
of Gerard Tabor
By the 18th-century, Humoral medical theories of breast cancer were largely abandoned, with the mastectomy becoming the preferred method of treatment by physicians of the time.  In 1811, the Victorian novelist Fanny Burney, described in a letter, her experience of a mastectomy without anesthetic or proper sterilization procedures.  It's a harrowing account, and is recounted in full in the attached link, however this excerpt is wholly descriptive of the agony endured by Madam Burney.
Fanny Burney
 (b. 1752 - d. 1840)
My dearest Esther, - & all my dears to whom she communicates this doleful ditty, will rejoice to hear that this resolution once taken, was firmly adhered to, in defiance of a terror that surpasses all description, & the most torturing pain. Yet - when the dreadful steel was plunged into the breast - cutting through veins - arteries - flesh - nerves - I needed no injunctions not to restrain my cries. I began a scream that lasted unintermittingly during the whole time of the incision - & I almost marvel that it rings not in my Ears still! so excruciating was the agony. When the wound was made, & the instrument was withdrawn, the pain seemed undiminished, for the air that suddenly rushed into those delicate parts felt like a mass of minute but sharp & forked poniards, that were tearing the edges of the wound - but when again I felt the instrument - describing a curve - cutting against the grain, if I may so say, while the flesh resisted in a manner so forcible as to oppose & tire the hand of the operator, who was forced to change from the right to the left - then, indeed, I thought I must have expired.
Abigail "Nabby" Smith, the daughter of U.S. president John Adams and his wife Abigail, found a lump in her breast in 1809.   The family physician, William Rush, who after consulting with Nabby, wrote ominously to her family:
Nabby Smith (b.1765-d.1813)
"....This remedy is the knife.  From her account of the moving state of tumor, it is now in a proper situation for the operation.  Should she wait till it suppurates or even inflames much, it may be too late....I repeat again, let there be no delay in flying to the knife."
Ultimately a surgeon, by the name of John Warren of Boston, operated on Nabby in the upstairs bedroom of the Adams' house. His kit of surgical tools included a large fork with two six-inch prongs sharpened to a needle point, a wooden-handled razor, a pile of compress bandages, with a small oven of red-hot coals which heated a flat, thick heavy iron spatula.
18th Century Mastectomy Instruments
similar to those described in Nabby's operation
Nabby entered the bedroom dressed in her Sunday best, and was directed to sit down and lean back in a reclining chair, upon where her waist, legs, feet and right arm were belted, and her left arm was raised above her head.  Whilst another physician held her raised arm, and another stood behind restraining her shoulders and neck:
".....Warren then straddled Nabby's knees, leaned over her semireclined body and went to work....."  
A full account of the operation, again performed without anesthesia or sterile conditions,  Nabby's recovery,  and then her eventual demise from the disease in 1813 at the age of forty-eight, is available in essay form, from James S. Olson's book in the attached link.

Asa and Lucy Thurston
Similarly, Lucy Goodale Thurston (b.1795 - d. 1876), a missionary living in Hawaii, also wrote an incredible letter describing her mastectomy performed without anesthesia in 1855. Consider this excerpt:
"Then came a gash long and deep, first on the side of my breast, then on the other.  Deep sickness seized me, and deprived me of my breakfast.  This was followed by extreme faintness.  My sufferings were no longer local.  There was a general feeling of agony throughout the whole operation."  
 Reading these women's stories, reminds us of the resilience of women even in the most dire of circumstances and there's something in this that I connect with in trying to come to terms with my own breast cancer treatment.  No matter how bad things seem for me at times, it's almost unimaginable to think of the sheer terror and horror that each of the women featured in this post must have gone through.  And yet somehow they found the fortitude to stare down the beast and suffer and endure the most indescribable indignities in seeking a cure for their disease.  What I find even more interesting about Fanny and Lucy's cases, is that they wrote about their experiences in a time when breast cancer was considered shameful, something to be hidden and most certainly not discussed outside of the immediate family.

But in some ways, this is where my experience and the experiences of these women converge.  Indeed Gayle Sulik, in her blog post entitled "the terrible stories" and discussing the works of African-American poet, Lucille Clifton who also had breast cancer, articulates very well the importance of writing in dealing with this kind of trauma;
"The “terrible stories” of which Clifton speaks reveal the power of story-telling especially when confronting challenging life experiences. The narratives, necessary and terrifying, are a way of communicating, finding connection, and giving voice to private, deeply felt experiences."
Unable to speak freely about their experiences, perhaps Fanny and Lucy found solace in their letter-writing, and were able to find a way to connect with what had happened to them.  In all likelihood, writing was their only means of support in trying to heal from the great traumas their minds and bodies had gone through.  In many respects, this is no different to the reasons that we blog about our own cancer experiences today.

In reading and digesting these women's stories,  what shone through for me, was the spirit possessed by these women in facing their terrifying surgeries and treatments.  It's a spirit that I think many women possess.  It's not necessarily bravery, or courage or saint-like strength.  But more of a spirit of "can-do".  I think it's the same spirit that gets me through.  And perhaps this is what my oncologist is trying to tap into when she tells me that "I can do this and that I will get through it".  It's this can-do spirit, shared by so many women and reflected in so many stories, past and present, of famous women and ordinary women alike, that I find so inspiring and motivating.

In the cancer culture, we continue to embody the spirit of can-do women everyday, probably without even realizing it.  Sarah Horton of Being Sarah, a published author and dedicated breast cancer activist in the U.K; Gudrun Kemper of Breast Cancer Action Germany, an independent voice for German women affected by breast cancer in a cancer culture dominated by pharmaceutical corporations; Gayle Sulik, author of Pink Ribbon Blues, asking the tough questions of the U.S. breast cancer movement; Jody Shoger of Women With Cancer, a tireless cancer advocate who's harnessed the power of Twitter (@jodyms) to keep us informed of the cancer-world news; Chemobabe, Katie at Uneasy Pink, Kathi of The Accidental Amazon, Stacey of Brining Up Goliath, Nancy of Nancy's Point, Brenda of Breast Cancer Sisterhood, Marie of Journeying Beyond Breast Cancer, Sarah at The Carcinista; are but a few more of the wonderful community of can-do women bloggers doing their bit to keep the fires burning and the spotlight on the realities of lives interrupted and challenged by a cancer diagnosis. We continue to share, we continue to write and we continue to just keep doing what we do.  Why?  Because we can do it !

And so readers it is with this "can-do" spirit in mind, that today I am fulfilling a promise to myself (mentioned in my post, "Moving Forward") by launching a new blog called:

Can-Do Women
An Homage to the Everyday Lives of Women, Past and Present

I will continue to write The Cancer Culture Chronicles with the same energy and attitude as before, but the Can-Do Women blog will fulfill an avid interest that I have in women's social history, and a desire to expand my writing interests beyond the cancer realm. I hope that it will become an interactive magazine-style blog, in which we can all share something about the Can-Do Women that we encounter from the past, present and in our everyday lives.  Please do let me know what you think, and your suggestions for features will be most welcome.  Features may take any form; stories, photographs, poetry, articles, interviews, pictures, advertisements, recipes, videos, snippets of everyday life, the form is really unlimited.  You can email me at or connect via the Can-Do Women Facebook page.

Please join the conversation.  You are most welcome.