Category Archives: breast cancer deadline

A True Advocate

Everybody had something to say about Angelina Jolie during May. You couldn’t open a newspaper or magazine, or read a blog without hearing an opinion about her risk for breast cancer and her individual decision.  This dialogue was probably the biggest breast cancer conversation we have had as a nation so far.  Everybody had an opinion.

Me?  I couldn’t muster much interest.  I kept thinking about Maria Wetzel.  Her story wasn’t making the NY Times or CNN.  While Angelina was announcing to the world her tough decision, Maria was making the decision to enter Hospice care.

You didn’t hear about it in the news, but Maria’s story is also about courage, about advocacy and compassion, about empowering others, and about working to make the world a better place. Maria is the real deal, an advocate for those who would come after her. She is one-of-a-kind in intellect, spirit and heart.  But she is not a celebrity. And sadly, her breast cancer story is not unique, but typical. Run of the mill.  It is relevant to more of us, but unfortunately, will go mostly unheard.

Before 1996, Maria never spent any time thinking about cancer.  She lived in northern California, enjoying the outdoors, and life with her husband and 14 year old son.  She worked as a Clinical Laboratory Scientist, looking for pathogens in other people’s blood samples.  But after the day in 1996 when she was diagnosed with Stage II breast cancer, she never spent a day without some thoughts about cancer.  She read, and connected online, everyday, learning as much as she could; First for herself, for treatment decisions, or to lessen side effects, but gradually learning for others.  She began sharing information and research findings, doing peer support work in her community for those newly diagnosed, and translating research findings into lay language for those less familiar with science jargon.

Though she had a good science background, she wanted further training and took NBCC’s Project LEAD, Clinical Trials LEAD, as well as the Quality Care LEAD. She began attending research symposia.  Over time, she became frustrated with the “breakthroughs” that never ended up doing much for patients. She began participating in peer review of breast cancer research proposals, looking to award funding to the research that would provide more than incremental benefit, and was invited to serve as an ad hoc reviewer for the Integration Panel of the DoD Breast Cancer Research Program.  She developed into a passionate advocate for ending breast cancer, and she knew this was going to require major change in the breast cancer world.

Maria always felt she wasn’t finished with the disease after that first diagnosis in 1996, but after nine years she let herself think maybe, just maybe she’d be one of the lucky ones. But in 2005 she was diagnosed with a chest wall recurrence, and in 2011, with metastasis to her lungs and liver.

Though she was living with metastatic disease, she continued her advocacy, working to help others and to see an end to breast cancer for future generations.  She called herself the reluctant advocate, but she couldn’t stop;  Friends were dying, two of her sisters were diagnosed.  She wrote in a blog, “Every time I would even think about retreating from my advocacy work, something else would happen to forcefully remind me that we’re far from having the answers we need. I would love to live my life with few thoughts of cancer. This is not how I intended for it to turn out. It has become even more vital to me to advocate for better research, to change the conversation about what is done and how it is done.”

Maria Wetzel died yesterday, surrounded by her family.  It’s a tremendous loss for breast cancer advocacy, but also for so many of us personally.  Maria has been a part of my experience as an advocate from the beginning, since I joined this world after my own diagnosis six years ago.  We’ve worked on advocacy projects together, meeting at research symposia and panel reviews, and emailing back and forth about the latest study.  Once I was working at NBCC, I could always count on Maria to help with the hard stuff, but also to be the advocate who would ask me the hard questions.  Afterwhich, she would always directly follow up with a friendly question about one of my kids or a comment about the weather or birds in Michigan.  I’m glad she asked the hard questions of me and of all of us, and I will continue to ask the hard questions of myself and others to honor her.

Angelina Jolie had a rare genetic mutation that put her at risk for breast cancer.  Over 99% of women won’t have that mutation and won’t be faced with the difficult choices Ms. Jolie faced.  Unfortunately, Maria’s story is much more common.  One in eight women will develop breast cancer over their lifetime, and the majority of those women will have the type of breast cancer Maria did.  This breast cancer is hormone responsive, and can lay dormant for many years before reappearing and spreading.  Most people don’t understand, or don’t want to understand, this fact about breast cancer.  Even scientists know very little about why or how the cancer reappears, or most importantly how to prevent it.

Maria was relentless in pushing for meaningful answers.  To honor Maria, let’s continue asking the hard questions, of ourselves and of everyone in the breast cancer world, changing the conversation and breast cancer dialogue wherever we can.  Maybe there won’t be a national dialogue about Maria Wetzel and her decisions, but we can do our best to continue the work together, no matter how reluctantly, no matter what the challenges we face individually, to truly make a difference in the mission to end breast cancer. Maria would love to see nothing less from us.

Maria Wetzel

Remarks at the Collaborative Summit on Breast Cancer Research

Collaborative Summit

I attended the Collaborative Summit on Breast Cancer Research in Washington D.C., held January 31- February 1. The goal of the Summit was to gather researchers, funders, advocates, and industry representatives together to assess the breast cancer research landscape and to develop collaborative projects for moving forward. Below are the remarks I gave during the opening plenary panel on the breast cancer research landscape and on NBCC’s current projects and priorities.

I am excited to be here and to have the chance to talk about the bigger picture of breast cancer research, where we have been and where we should be going. So much of the year is spent down in the weeds when it comes to breast cancer research, when we attend the ASCO meeting or SABCS, or when we review grant proposals, so it is gratifying to have this opportunity to for all of us to pull our heads up from the weeds and to discuss the long view.

And for me, the long view, means thinking about my 13-year-old daughter. Where do we need to be by the time she and her friends are adults? Are we on track? Will things be dramatically different in ten, twenty, thirty years when it comes to breast cancer? Or will mothers, grandmothers and young women and even men still be dying of breast cancer? Will we know by then why breast cancer cells can lay dormant for 15 years to reemerge and metastasize? Will we know how to eliminate those dormant cells from the beginning? And what about women who have aggressive disease from the get-go. Will we understand why it developed and more importantly know how to stop the progression for the long-term?

Unfortunately, I don’t see dramatic change on the horizon with current approaches. The ACS predicts that over 300,000 women will be diagnosed this year with in situ or invasive breast cancer. Dr. Gil Welch and others predict that between 30 to 50% of those could be considered overdiagnosis. We continue to add more women into the equation, putting them at risk of harm from treatments, and yet, are we seeing a difference in the measures that matter? Yes, we have seen steady, incremental declines in breast cancer mortality since the early 90s, but there has been no acceleration in this decline. And do we know what this really means? What IS working for women and what is not? Do we know how many women have died from the treatments? Do we know if death from breast cancer is being delayed rather than prevented? Are we really any closer to knowing how to prevent breast cancer or a breast cancer death for an individual woman?

What we do know is that the rate of diagnoses of Stage IV disease has remained constant for 30 years. What we do know is that 40,000 women and men will die from the disease again this year. What we do know is that the median survival for metastatic breast cancer has remained constant, at about three years.

With billions in resources and decades of effort, we see discovery of new targets, and development of new agents, that extend life by three to four months at a time, if we are lucky. We are learning a lot about the DNA of breast tumors, and the layers of complexity involved, but are we really gaining a better understanding of the why and how of breast cancer? The kind of understanding that will allow for development of gamechangers?

A pharma analysis report prepared a few years ago concluded that with what is currently in the pipeline, and based on historical trends, the median survival for metastatic breast cancer will inch forward from three years, to three years and six months by the year 2021. Important progress and critical efforts, yes, but is it good enough? No, it is not good enough. We can and must do better. We need new approaches to complement the old ones. We need new ways to look at the disease. We need to find approaches that give us hope of doing better. Targeting of mutations alone, in a disease that constantly grows and mutates, will never be enough.

In 2010, NBCC set a deadline. By the end of the decade we need to understand much more about metastasis and about development of primary breast cancer, so that we can prevent deaths and end this disease. The deadline is a tool to cause disruptive change. The purpose is to shift the focus, to look at the disease differently, to consider new approaches that give us hope of doing better.

How do we get there? To achieve success we have to do more than bring everyone together who works in the field, increase funding, and see what happens. We need to demand more focused research with the end results in mind. We need to bring new perspectives to the table. We need more translational research. And we need to measure what matters. It may just take having specific goals in mind, timelines, and yes, deadlines to get us there.

Many say to us, that’s not how science works. But, I know how science works. I did graduate work in nutritional biochemistry at Cornell University, I carried out a large thesis project involving lactating rats, looking at the impact of malnutrition on milk composition. I know that science works by asking questions, and figuring out how to test theories about the answers to those questions.

So what if we can all agree on what those questions should be? Questions that will help drive us to an understanding of how to prevent deaths from breast cancer? Science can work towards meeting goals and yes – even meeting deadlines. I know I had to answer my research questions in a certain time to finish my thesis and graduate. Scientists meet deadlines all the time. Right now, in the field of breast cancer research, we have many people asking many questions in an infinite number of directions. We are producing incredible volumes of information. But for all of that effort we are seeing minimal benefit for women. Something has to change. We need leadership and coordination of efforts, sharing of information, all of us working together on common goals. We need the will to ask the right questions, and the resources to explore those questions. And then we have to measure what matters to judge success.

NBCC has spent the last two years exploring how to do this on a small scale with what we call Artemis Projects. These are a series of collaborations among patient advocates and researchers from diverse perspectives. The purpose of the collaborations is to develop strategies, research plans and timelines for answering key breast cancer questions. Patient advocates are there to make sure efforts are always focused on the end result.

The first of our Artemis Projects was launched in 2011, bringing together a group of advocates and scientists to take a strategic, systematic yet broad approach to the development of a breast cancer preventive vaccine within five years. We bring together a group of close to 40 each year to assess progress and to readjust plans. We also hold smaller meetings to bring together experts to bear on particular issues as needed, and have an online community for the project to keep things moving in between meetings.

As most of you know, we don’t typically fund research directly. But through the generous support of National Philanthropic Trust (NPT), NBCC has awarded two seed grants as part of this project, one to Dr. Paul Spellman and Dr. Joe Gray of Oregon Health and Science University to identify possible vaccine targets using existing and developing human genomic data within different breast cancer subtypes.

And a second seed grant was awarded to Dr. Paul Ewald at the University of Louisville, and Dr. Vladimir Belyi of The Cancer Institute of NJ to look at infectious agents and breast cancer. Bioinformatic tools will be used to take a systematic approach to intersect the genomes of known viruses and a broad array of cellular pathogens to identify their presence and prevalence in breast cancer genomes relative to normal breast tissue. Initial data from both of these seed grants will be presented at the next annual meeting in March.

We will also be kicking off a second Artemis Project on Metastasis in June to focus on tumor dormancy. As with the Artemis Project on the Preventive Vaccine, our goal is to bring together investigators with diverse perspectives to brainstorm and develop innovative strategies for accelerating progress.

In summary, I think we do have the will and the resources to come together on asking the right questions. We have heard from others this morning about new initiatives focused on prevention and metastasis. I see positive steps being taken to prove that pharma analysis wrong. If we can keep the end result in mind, where we want to be when all of those 13 year olds are 21 year old adults and beyond, I feel hopeful we can change the course. I look forward to the rest of the meeting for further discussion on how we are going to get there. Thank-you.

Random Acts of Science and Business: Reflections on the San Antonio Breast Cancer Symposium

After attending my fifth San Antonio Breast Cancer Symposium it seems, once again, that we are inching forward ever so slowly in improving survival for some women, but at a great cost to many.  Much effort is going towards breast cancer research, but these efforts seem diffuse, with a hit or miss strategy.  Many results never reach the clinic.  Those that do may or may not lead to marginal improvements for some, but most often add risk of toxicities for many. Thousands of researchers and oncologists once again gathered to hear about studies focused on comparing different doses, different schedules, different combinations of treatments, with some showing marginal improvements in survival, most showing no difference.  Very few presentations focused on how to reduce the risk of toxicities from treatment for the increasing numbers of women being diagnosed with early breast cancer, many of whom may have been fine with no treatment at all.  Almost no presentations focused on preventing the disease in the first place.

I like to imagine how different it could be if there was a mission-driven approach to breast cancer research, and everyone was coming together to strategize about achieving very specific goals, rather than diffuse pursuits in many directions.  What if there was a coordinated effort throughout the year to answer a few directed questions that could lead to understanding how to prevent deaths from the disease?  How exciting it would be to come together each year to hear about that kind of progress.

Instead, the presentations I heard often seemed driven by the needs of pharma or business, but not women.  How can we recapture the market for a drug going off patent? Or how do we move the drug to another stage of the disease and capture a new market?  Or the needs of scientists.  Many presentations this year looked at associations between genomic profiles and various factors of the disease or treatments.  This is elegant science, which leads to papers and new lines of laboratory research for next year, but I didn’t hear much evidence that this work was leading to benefits for women.

A few presenters said we may be going about it all wrong.  Dr. Fatima Cardoso, in a presentation on treatment guidelines for women with metastatic breast cancer, said we need to think of metastatic disease as a different disease and study it as a different disease, not as grounds for studying adjuvant treatment of early breast cancer.  The current model is to develop a drug that shrinks tumors, prove its efficacy in the metastatic setting, and then move it into the adjuvant setting to prevent recurrences.  And add it on to existing standard of care to see if it improves survival.  The problem, said Dr. George Sledge in a presentation on tumor dormancy, is that agents that can halt progression in a metastatic setting may be completely different from those that can remove residual disease after surgery for early breast cancer, or that maintain tumor dormancy and prevent a reemergence of the disease.  I would also say that another problem of this add-on approach to breast cancer treatment is that while sometimes bringing marginal benefit, this approach continues to escalate the risk of treatment toxicities.

Our work must continue as advocates for women, to right this ship, getting researchers to focus on the appropriate questions that will lead to meaningful progress and lower toxicities.  This year, we remain hopeful that a new class of drugs, antibody-drug conjugates (ADCs), will alter cancer care, bringing greater efficacy and at the same time greatly reducing the harms of treatment.  These ADCs can deliver chemotherapy directly to cancer cells, resulting in cell death, while avoiding harm to normal cells.  But they must be evaluated on their own, and not simply added to regimens of systemic chemotherapy.  We continue to advocate for the company  (Genentech), that developed an ADC for HER2+ breast cancer called T-DM1, to evaluate the new drug in early breast cancer without systemic chemotherapy, to finally give the promise of targeted breast cancer treatment, with lower toxicity, a chance to be achieved.

Specific findings reported at this year’s symposium:

CDK-inhibitor

This was one bright spot at the meeting.  Encouraging results were presented from a small study of a new agent, done in two parts, with just under 200 women who had ER+ advanced breast cancer.  The agent, which is identified as PD 0332991, was developed from the work of Dr. Dennis Slamon and colleagues, funded by a DOD Innovator Award. It is an inhibitor of cyclin-dependent kinases (CDK), necessary for DNA synthesis.  In the first part of the study, women were randomized to receive PD 0332991 with letrozole, or to receive letrozole alone.  In the second part of the study women were screened for a biomarker, abnormal levels of the CDK protein.  The good news is that women who took the CDK inhibitor had a median progression free survival of 26.1 months, compared to 7.5 months for the women who took letrozole alone. The disappointing news was that the effort to identify a biomarker of response beyond ER was not successful.  More low white and red blood cell counts were reported with the new drug, but were readily managed and produced few complications for the women.  A phase III trial of the CDK inhibitor begins in 2013.

Avastin

Though FDA approval for Avastin in the metastatic breast cancer setting was revoked last year, clinical trials of the drug are continuing, and we continue to get reports.  I wonder how many women are still receiving this drug and what it would take for researchers to stop these trials.  Two studies were presented this year – the BEATRICE trial, looking at Avastin to prevent recurrence in women with triple negative disease, and the LEA trial, looking at Avastin in combination with hormonal treatment for first line treatment of metastatic breast cancer.  In BEATRICE, a trial of over 2500 patients, the three year recurrence rate was virtually the same for both arms of the study, with greater toxicity in the Avastin arm.  In LEA, investigators were hoping to show that Avastin if given without chemotherapy, would be more beneficial.  But results from the trial of 380 women showed no differences in overall survival, and in fact, there was a trend toward lower survival in the Avastin arm, though this wasn’t statistically significant.

Eribulin

Results were reported from a phase III trial of eribulin mesylate for women with previously treated metastatic breast cancer, showing no significant improvement in overall survival, when compared to capecitabine.

Letrozole for Lobular Carcinoma

Lobular carcinoma accounts for approximately 10% of invasive breast cancer, and is usually ER+.  An analysis from BIG I-98, a study comparing letrozole with tamoxifen for preventing recurrences in post-menopausal women, was presented showing that women with lobular cancers were deriving greater benefit from letrozole, than women with invasive ductal carcinoma. Previous results had failed to demonstrate an overall survival advantage with letrozole for all of the women in the study, but this subset analysis did find a greater overall survival advantage with letrozole vs. tamoxifen for women with invasive lobular carcinoma.

Faslodex

Results from CONFIRM, a study of different doses of Faslodex for recurrent or metastatic breast cancer, were presented showing a median overall survival of 26.4 months for the higher 500 mg dose of Faslodex compared to 22.3 months for the smaller dose of 250mg. At least one serious adverse event was experienced by 8.9% of the women receiving the higher dose, compared to 6.7% receiving the lower dose.

Dose Dense Chemotherapy

A ten-year follow-up analysis of adjuvant dose dense chemotherapy, given every two weeks and at a higher dose, instead of the standard dose every three weeks, showed a benefit in overall survival.  In this study of over 1200 women with 4 or more positive lymph nodes, 10 year OS rates were 69% for those on the dose dense regimen, compared with 59% for those receiving the standard regimen.  Nine cases of leukemia were reported in the dose dense arm vs. two in the standard arm.

Leukemia risk from treatment for early breast cancer

From clinical trials results we know that adjuvant treatment for breast cancer increases the risk of developing leukemia.  A review of the records (a NCCN database) from over 20,000 women treated for early breast cancer found an overall cumulative risk of developing leukemia after ten years of 0.27%.  The women who developed leukemia tended to be older, and the risk increased in those receiving chemotherapy vs. no chemotherapy, and for any radiotherapy vs no radiotherapy.  No increased risk was observed if a taxane was added to an anthracylcine chemotherapy regimen.

Herceptin

Results were presented at this symposium and earlier this year at a European meeting on the optimal duration of Herceptin treatment for HER+ early breast cancer.  The HERA trial found no difference in recurrence or survival between one or two years of treatment, and the PHARE trial, which was designed to determine if six months did not give a worse outcome, had inconclusive results.  One year of Herceptin treatment remains the standard of care.

Tamoxifen

The ATLAS study (Adjuvant Tamoxifen – Longer Against Shorter) was the one most covered by the media this year.  In this study, over 6800 women who had completed five years of treatment with tamoxifen for early breast cancer were randomized to continue tamoxifen for five more years or to stop treatment.  Compliance was approximately 80% and a benefit was found for the longer treatment, but it didn’t show up until after it was completed, in years 10-15 following diagnosis. The benefit was modest and the risk of side effects did increase.  Breast cancer mortality was 15% for those women who stopped tamoxifen at five years, compared to 12.2% for those who continued for ten years.  The cumulative risk of recurrence was 21.4% for women who took tamoxifen for ten years, compared to 25.1% for those who stopped.  The rate of endometrial cancer was 3.1% in the ten year group, compared with 1.6% in the group that stopped at five.  There was also an increased risk of pulmonary embolism in the ten year treatment group, though there were no differences in the risk of stroke.

Radiation Therapy

Several studies on radiotherapy were presented.  Most notably, ten year follow-up from the START trial demonstrated that three weeks of treatment is at least as safe and effective as the standard five-week schedule of treatments.  Researchers with the TARGIT-A trial, looking at a single dose of radiation delivered internally vs. whole breast externally delivered radiation, presented preliminary results showing no differences in breast cancer deaths but a decreased mortality with the single dose from cardiac related deaths and second cancers.

Breast Cancer Metastasis – Changing the Conversation

Though it is the spread of breast cancer, or breast cancer metastasis, that ultimately takes the lives of women who die from the disease, only a fraction of the research into the disease is aimed at a greater understanding of this process. And the public dialogue, including government officials, is too often focused on screening mammography as the best or only solution, with the false claim that metastasis could be eliminated simply through widespread use of mammography.1 Sure, industry continues to focus on metastasis – nearly 2,000 drugs for the treatment of cancer are under development. 2 But these drugs can win FDA approval and generate huge profits while providing little or no meaningful benefit for patients. Think of Avastin, costing approximately $8,000 a month,3 showing no increase in survival from breast cancer in randomized clinical trials but increasing a risk of death from side effects. 4

It is time to change the conversation. We need to talk about why and how metastasis happens. And then figure out how to prevent it. Let’s face the reality that mammography is not enough. Women, even those receiving mammograms, will continue to be diagnosed with metastatic breast cancer, sometimes years after an initial “early” breast cancer.5 And for these women, drugs that may or may not add a few more weeks or months of life, and can have lethal side effects of their own, are not enough. We must do more.

Since setting Breast Cancer Deadline 2020 last fall, NBCC has begun taking steps to change that conversation. We have pulled together a diverse group of 20 advocates and scientists who are working to plan a Metastasis Summit, to be held August 24-26, 2011. The Summit will bring together 35-50 stakeholders, leading investigators, regulators, and advocates, to develop a strategic plan to answer the question: what must be done to determine, by 2020, how to prevent breast cancer metastasis and save women’s lives?

Members of the Metastasis Summit Planning Committee are beginning their work by looking broadly and identifying a wide range of ideas worth investigating and researchers worth interviewing. Advocates on the committee will be conducting interviews over the coming months with the identified investigators, and then the work will begin to narrow the focus, and to identify the topics and participants for the Summit. The goal of the Summit will be to identify the key questions to carry into catalytic workshops in 2012, in order to get the research accomplished and translated to the clinic as quickly as possible.

But changing the conversation around breast cancer and metastasis must be much more than our Summit. The conversation needs to change in laboratories and classrooms, in the media, in the workplace, the halls of Congress, online, at the kitchen table. We want to hear from you. How are you changing the conversation? What do you think needs to happen to meet Breast Cancer Deadline 2020?

Work has also begun on NBCC’s other major focus for Breast Cancer Deadline 2020 – prevention of breast cancer all together. Look for information on the Prevention Summit in a future blog.

 

NBCC Breast Cancer Deadline 2020 Metastasis Summit Planning Committee

  • Shirley Brown, Advocate
  • Frank Calzone, PhD, Amgen, Inc.
  • Suzanne Fuqua, PhD, Baylor College of Medicine
  • John Glaspy, MD, PhD, UCLA Medical Center
  • Sherry Goldman, Advocate
  • Kathleen Harris, Advocate
  • Patricia Haugen, Advocate
  • Michelle Holmes, MD, DrPH, Harvard School of Public Health
  • Debbie Laxague, Advocate
  • Debra Madden, Advocate
  • Silvano Martino, DO, The Angeles Clinic & Research Institute
  • Musa Mayer, Advocate
  • Marlene McCarthy, Advocate
  • Shirley Mertz, Advocate
  • Laura Nikolaides, NBCC
  • Patricia Steeg, PhD, National Cancer Institute
  • Fran Visco, NBCC
  • Sandy Walsh, Advocate
  • Danny Welch, PhD, Kansas University Cancer Center
  • Maria Wetzel, Advocate

References

1”But under the law, every American who buys a new plan can access free preventive care like Pap smears and mammograms. That means women are no longer going to have to put off breast cancer screenings, taking the risk that their cancer could be caught late – when chances of survival can be as low as 23 percent – instead of early – when the survival rate is 98 percent.” Secretary of Health and Human Services Kathleen Sebelius in a blog post on Huffington Post, Protecting and Strengthening Women’s Health, Feb. 18, 2011.

 2 “Since the introduction of Herceptin® in 1998, manufac¬turers have been flocking to oncology, creating an R&D arms race. Several large pharmaceutical companies (some of which have little or no prior experience in cancer thera¬peutics) have committed more than 20% of their late-stage pipeline projects to oncology molecules.…. Nearly 2,000 individual molecules for the treatment of cancer are under development—a measure of the indus¬try’s determination and ongoing commitment to finding new and innovative treatments for cancer.” The Oncology Pipeline: Maturing, Competitive, and Growing by Steven J. Gavel. http://www.imshealth.com/imshealth/Global/Content/Web%20Article/The_Oncology_Pipeline3.pdf

3 http://www.washingtonpost.com/wp-dyn/content/article/2010/08/15/AR2010081503466.html

4 Treatment Related Mortality with Bevacizumab in Cancer http://jama.ama-assn.org/content/305/5/487.abstract

 5 Soliman H. Developing an effective breast cancer vaccine. Cancer Control. 2010 Jul;17(3):183-90.

Misconceptions about Breast Cancer Deadline 2020

It’s been almost two months now since NBCC set a deadline for the eradication of breast cancer.  We set a  deadline of January 1, 2020 as a tool to change the conversation around breast cancer.  Researchers, industry, the government, advocates, and the public have all become complacent.   Breast cancer has led to powerful industries of research, screening, diagnosis, pharmaceuticals, and even advocacy.  And many more industries gain through cause marketing of the disease every year.  NBCC set a deadline to change the status quo, to stand up and say this is no longer acceptable. NBCC declared a deadline to end breast cancer for everyone.  NBCC’s deadline campaign is focused on metastasis and primary prevention.

Thousands of people have listened, and heard, and new conversations are beginning.  Imagination has been sparked and people are allowing themselves to imagine a world without breast cancer and considering what it would take to get there.  But many others have also expressed doubt or even disappointment.  Some say it is too long to wait – why should we wait that long for a cure, they say.  Others say they are disappointed because they believe our focus is on prevention only. 

We used neither the word “cure” nor prevention when we declared the deadline.  We simply set a deadline to eradicate breast cancer.  To us, this means we need to learn how to prevent deaths from breast cancer metastasis and we need to learn how to prevent the disease from developing.

Some scientists have said it sounds like a gimmick or marketing campaign and it doesn’t fit with NBCC’s reputation and respect for science.  They say ten years won’t be enough time and it is naive.  They want to see our detailed plan.

But our deadline wasn’t set because we already have a detailed scientific plan on how to get there and just needed a target date to finish.  The deadline was set to change the conversation.  And to focus work on a deadline.  To bring urgency to our work. To end breast cancer. Business as usual is not working.  Progress in preventing deaths from this disease, or in preventing the disease all together, has been slow and incremental, if at all.  Too many resources have been focused on the wrong areas. 

We do have a detailed plan, but it is a plan for starting a new conversation and for changing and focusing research.  Our strategic plan is to engage all of the stakeholders around the goal. Scientists, regulators, industry representatives, and advocates have been and will continue to be invited to meetings focused on specific areas that will be crucial to achieving the goal with an emphasis on removing barriers and encouraging collaboration.

Two strategic summits will be held in 2011, one each on the topics of Metastasis and Prevention. Major issues that are ripe for further work and that would have a significant impact on breast cancer in a five year time frame will be identified. Catalytic workshops will then be held around these issues in 2012 and beyond.

 We could have kept on doing what we were doing, and I think we can guess where we would have been on January 1, 2020.  Or we can set a deadline to bring urgency – the catalyst we need for change.  We chose to declare a deadline.  Are you with us?

To find out more visit www.stopbreastcancer.org.

Hoping for a Cure

After I was diagnosed with breast cancer I wasn’t sure how I felt about pink ribbons.  They were suddenly everywhere I turned.  A lot of people seemed to care about breast cancer and there were certainly a lot of people hoping for a cure.  There were plenty of businesses getting on board too.  I could shop for the cure, bake for the cure, drive for the cure, even vacuum for the cure.  But something made me uneasy about all of this pink and hope.  If all of this shopping and hoping was making a difference why did I get breast cancer out of the blue in the first place?  And why was I being treated with the same toxic treatments of the past that may or may not prevent the cancer from returning?  The best I could do after eight months of surgeries, chemotherapy, and radiation was wait around and see if I died of something else to know if it had worked.  Not a lot different than what happened to women who were diagnosed with breast cancer decades before me.  That didn’t seem like much return for the millions of dollars being raised on pink ribbons and hope for a cure each year.

If hope was enough we would have cured breast cancer years ago.   But instead of curing breast cancer all of this hope and pink has created a huge economy that feeds on the disease and is sustained by people’s fears of the disease.  Cause marketing led to $1.55 billion in spending in 2009, with breast cancer being the greatest netting cause.  And the business of breast cancer extends far beyond cause marketing. The mammography business is expected to surpass $1.1 billion by 2015, according to a report by Global Industry Analysts, Inc.  The US market for vacuum assisted breast biopsies is expected to net $350 million by 2012. Pharmaceutical company Roche brings in $1 billion in revenues each year from Avastin for the treatment of metastatic breast cancer, despite the failure of studies to show it increases survival.

It is time to move beyond hoping and shopping for an end to breast cancer.  We must shift the status quo from the business of breast cancer to the end of breast cancer.  We must replace the complacency. We must bring back the urgency to end this disease.  We must demand accountability from those making a profit off breast cancer, and ensure that resources and efforts are focused in the right places to bring about eradication of this disease.

We’ve never set a deadline before.  It is time. Ten years to get it done.  Breast Cancer Deadline 2020.   www.breastcancerdeadline2020.org