I believe we accomplished our goals of challenging a diverse group of scientists and advocates to look at breast cancer metastasis in new ways, and of fostering new collaborations to focus on the problem.  Many researchers said they would be going back to their labs with a completely different perspective on research into preventing metastasis, and would be looking at their own projects and data in new ways.  One had this to say in a follow-up email:

“The questions you and your team had defined, plus all of the thoughts and plans we compiled in response, apparently now become a fixture in my thinking. I seem to constantly mull these ideas over. They pop into context when I now look at our own data and those of others.”

New relationships and new connections were made, between researchers working on the molecular level and those with new animal models and systems approaches, between translational researchers and theoretical and computational biologists, and of course, between advocates, including some living with metastatic breast cancer, and researchers working in all areas.   We had amazing discussions about possible approaches that aren’t receiving much attention or resources today, on ways to obtain convincing evidence,  and on how to best, and most efficiently, get results into the clinic.

At the Summit, three working groups of researchers and advocates crafted specific recommendations for future work to get us to an understanding of how to prevent breast cancer metastasis by 2020.  We are currently working with the science writers who attended the Summit to draft a report of those recommendations.  We will post a summary on our website as soon as it is available.  In the meantime, we continue with the hard work of changing the conversation – one conversation, one email, one blog, and one tweet at a time.

I would love to see your comments here – reactions, ideas, thoughts, research links, anything constructive – whether you attended the Summit or not, to help build that bonfire.

This will not be a typical scientific meeting.  There will be no formal presentations.  The 31 scientists and advocates will divide into groups to first diverge, and explore all of the different ways to view breast cancer metastasis and prevention.  Then we will converge, as a large group, to determine the most viable approaches for moving forward, and develop recommendations for next steps.  We will work together to see how different perspectives can intersect and complement each other, and ultimately, lead us to an understanding of how to prevent breast cancer metastasis from taking women’s lives.  We are not interested in incremental change.  We want to see leaps and bounds.  We believe this requires a broad, systemic look at the problem, and bold new ideas.

Science writers will document the work of the summit and produce a report on the recommendations.  After the summit, NBCC will determine how best to further the recommendations in 2012 and beyond.  Stay tuned.

The DOD BCRP is a collaboration between the military, scientific, medical, and breast cancer survivor and advocacy communities to develop and carry out research to end breast cancer.  It was established as the result of the National Breast Cancer Coalition’s 1992 campaign to dramatically increase federal funding specifically targeted to breast cancer research.  The BCRP  is the only federal  research program that involves consumer advocates at all levels of review and planning, including peer review, programmatic review, and conference planning.  Advocacy efforts of NBCC members over the years have ensured that the program continues, and over $2.5 billion in research grants have been awarded to date.

The purpose of the Era of Hope is to give a platform for all results from DOD-funded research, whether positive or negative, to be reported to the public.  Every two to three years, researchers who receive funds from the Program must present their results at this public meeting.  The Era of Hope program is designed by a Technical Planning Committee that includes scientists and consumers.

“This is the meeting where advocates will hold the scientific community accountable and ensure that they know our goal has always been to end breast cancer. We will not celebrate small discoveries at this meeting.  Advocates will be collaborating with the scientific community in order to help end breast cancer. The DOD BCRP is the only federally funded program where scientists and advocates collaborate in such a meaningful way,” according to Joy Simha, one of five advocates on the 18-member 2011 Planning Committee.

The 2011 agenda looks full and interesting.  This is my first Era of Hope meeting, and I’m looking forward to hearing all of the reports from the scientists, and for the opportunity to challenge and question, and to collaborate on defining the best next steps that will help us meet Breast Cancer Deadline 2020.

]]> http://breastcanceradvocate.wordpress.com/2011/07/31/why-are-so-many-breast-cancer-advocates-headed-to-orlando-during-august/feed/ 3 breastcanceradvocate http://breastcanceradvocate.wordpress.com/2011/07/19/pink-fatigue-and-advocacy/ http://breastcanceradvocate.wordpress.com/2011/07/19/pink-fatigue-and-advocacy/#comments Tue, 19 Jul 2011 19:04:31 +0000 breastcanceradvocate http://breastcanceradvocate.wordpress.com/?p=598 ]]> Add disillusioned breast cancer survivors and the power of social media together and you have a storm brewing against the mother of all cause marketing – pink ribbons and breast cancer.  Liz Szabo of USA Today writes this week about the power of breast cancer bloggers and how they are catching the attention of the largest breast cancer group – Susan G. Komen for the Cure®.

Pink ribbon marketing may be a victim of its own success.  It has worked so well that every company and organization wants to be a part of it, creating some questionable alliances that are now attracting the bloggers’ attention.  I wrote about one in my own blog.  What is startling to me is that breast cancer cause marketing has expanded to new levels, and not just in October anymore.  This past weekend I walked into Jersey Mike’s to be bombarded with pink banners and posters.  Mikes’ Way to the Cure….oh my.  Jersey Mike’s has created a six month, cause marketing plan with three phases!  The first phase gives me the opportunity to buy specially branded breast cancer collectible cups.  Wow.

But the real issue for me? Where’s the Progress?  Attention to the disease isn’t necessarily a bad thing.  And people wanting to contribute to the end of the disease in some way is certainly not a bad thing.  As someone who has had the disease and as an advocate, I appreciate the focus and attention on breast cancer, and people’s good intentions.  But, bottom line? I want to see results for all of this attention.  Something is going terribly wrong when so much attention has led to such dismal improvements (read NBCC’s progress report here).

What has gone so terribly wrong?  There are several answers, and there has been much already written about our failure to win the 40 year war on cancer….but for breast cancer a major problem seems to me to be the misguided focus on early detection as the primary solution.

Kudos to the many breast cancer bloggers who are questioning this status quo in the breast cancer world – pinkribbonblues, thecancerculturechronicles, chemobabe, uneasypink, accidental amazon, and regrounding, to name a few.  This groundswell of disenchantment is amazing and encouraging to me.  Getting people’s attention and questioning the status quo are the first necessary steps in bringing real change, according to Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change.

The next step is presenting an alternative.

  “Individuals and organizations must do the hard work of becoming ready to question the status quo, and be smart enough to present well-founded alternatives,” according to the authors.

What is the alternative for breast cancer?  Advocates with the National Breast Cancer Coalition (NBCC) argue that we need to turn the focus and attention away from early detection as the answer and instead focus on prevention of the disease and on understanding metastasis.  We won’t stop deaths from breast cancer without knowing how to prevent the disease or without understanding how and why the disease spreads.  Period.

I am hopeful that we can all work together to challenge the breast cancer status quo, change the conversation, present smart alternatives and bring real change for women and men with or at risk of breast cancer and their families.

There has been a lot of talk in the media about the focus on personalized medicine at this year’s meeting here in Chicago - finding out the genetic fingerprint of a tumor and finding the drug that will match up with the patient’s tumor.  Sophisticated science, yes, a boon for pharmaceutical companies, yes, but great for patients?  Not so much.  These high tech, targeted treatments are adding months, not years to patients lives, at great expense.   Focusing only on the genetic drivers of tumors is not enough.  Cancer, particularly advanced cancer, usually finds a way to work around any of the road blocks thrown its way.  More mutations and resistance are almost always inevitable.  We need something more, a different approach.  We need to cut cancer off at the knees before it gets threatening at all.

The presentation that picqued my interest the most as possibly opening the door to something game changing was a presentation by Dr. Robert Weinberg of the Whitehead Institute for Biomedical Research.  His talk was entitled The EMT and the pathogenesis of high-grade carcinomas.  He spoke of new insights from his lab and others on how cancer may come to eventually metastasize and take lives, and how the biological changes that are occurring may be foreshadowed extremely early on, like maybe 30 to 40 years before the cancer causes death.  Dr. Weinberg presented data to show that differentiation of the cells very early on determines their future metastatic potential.  An idea that goes against conventional thought.  It may not be because of genetic mutations occurring late in the stage of cancer, as many believe and where much of the research is currently focused.  His theory is that the cell of origin plays a role in determining future tumor morphology and behavior.

And his second point was that the interaction between the cancerous cells and the surrounding tissue or stroma also plays a crucial role in the development of metastases.  Signals from the surrounding tissue cause some of the cells to undergo changes, a  biological program, called the epithelial-mesenchymal transition (EMT).  This transformation, he said, causes cells to take on traits that make them highly malignant, such as increased motility, invasiveness, and heightened resistance to apoptosis or cell death.  These changes make the cells like stem cells, cells that can self renew.  It is these cells, Dr. Weinberg speculates, that lead to metastatic growth of tumors. 

Most importantly, Dr. Weinberg showed convincing data to indicate that current cancer treatments aren’t effective against these cells that have undergone the EMT transformation, becoming more deadly.  Traditional chemotherapy agents are effective at wiping out the non-stem cell like cancer cells, but not those that have taken on the traits necessarly for self renewal at distant sites.  This could help explain the reappearance of cancer after dormancy, and the eventual spread of disease after removal of primary tumors.   Dr. Weinberg also showed data to indicate that non-stem cell like cells have the ability to spontaneously go through the EMT process and become stem like.  The implication for effective treatment of cancer, he emphasized, is that treatment must address both stem cells and non-stem cell like tumor cells.

I hope that some other laboratory groups and those in industry shift some resources toward following this line of thought – it makes sense based on what we now see happening to patients with cancer, and it provides a game changing possibility for really curing people of the disease.  That is an exciting possibility.

I look forward to learning more at the meeting.  Most of the research abstracts are currently online and can be searched here.  Please leave a comment if you find or hear about an interesting study to be presented at ASCO.

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.

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.

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

The Annual Advocacy Training Conference begins this weekend in Washington DC.  Over 90 speakers will be presenting information on breast cancer research and public policy.  Topics range from Pregnancy Associated Breast Cancer to Breast Cancer and the Media – Who Gets in Right? to Update on PARP Inhibitor Research.  See the program here.  If you are not able to be there, sign up to get email updates from an e-advocate!  Find out more here.