The metastatic breast cancer community has been watching National Breast Cancer Coalition’s (NBCC) call to " 'End Breast Cancer by 2020' " since it was first announced in 2010.  The original NBCC Deadline 2020 White Paper made many points of keen interest to us, including the following: 

• "Despite years of campaigns to raise awareness, ever expanding screening programs, increased fundraising efforts and research, breast cancer incidence and mortality have not changed significantly." (i)
• "Evidence of actual mortality reduction is conflicting and continues to be questioned by scientists, policymakers and members of the public" (ii)
• "If mammography has had any impact on mortality, it is certainly a very small one" 
• And our favorite:  "Our goal must be to save lives" (iii)

We could not have agreed more with these excellent points and we applauded the NBCC’s effort to bring them to the attention of the public in 2010. 

My colleague from the Metastatic Breast Cancer Network, Ellen Moskowitz, and I reminded you at the time that there is no category of Americans more concerned with breast cancer mortality than the metastatic breast cancer community.  Every day of every year 110 of us die of this disease.  Over the course of your Deadline 2020, almost 500,000 American women and men with metastatic breast cancer will die and 730,000 to 860,000 additional breast cancer patients will have be diagnosed with the disease in the US.

As to your goals, prevention of breast cancer altogether is indeed a noble goal.  Prevention of metastasis is another noble goal.  But taking direct action to stop death is the noblest cause of all.  And given the hundreds of thousands already struggling to stay alive, stopping death means focusing squarely on the stage IV community and doing everything possible to render metastatic cells incapable of spread and the ability to cause death.

As early as 2009 researchers, including the esteemed career metastasis researcher Danny R. Welch, Ph.D., stated that "within 10 years, suffering from and potentially death from stage IV breast cancer could be reduced significantly if the research were fully funded".  Had we begun this focus in 2010 at the start of Deadline 2020, just think how far along we would be.  Yet as we read the NBCC White Paper and attend NBCC’s conference, we see no intent whatsoever to focus funding on finding solutions for the metastatic breast cancer community, either now or in the future.
.  
We, the metastatic breast cancer community, have a far greater stake than anyone else in ending death from breast cancer for we are the only ones dying of the disease.  Every one of us is facing almost certain death unless funding for metastatic breast cancer research is significantly increased.  Thus we had high hopes when you began planning your 2011 Metastasis Summit.  At METAvivor we looked forward to giving our input.  Yet that did not happen.  No invitation was issued anyone at METAvivor despite our knowledge that some of the most senior researchers and advocates on your team strongly recommended our attendance.  We have the following questions for you about that summit. 

• How many patient advocates were invited and of those, how many were allocated metastatic breast cancer patients?
• How many researchers were invited and of those, how many were career metastasis researchers?
• Why was the only metastatic breast cancer patient organization focused on research, METAvivor Research and Support, not invited to send a single representative despite the fact that it was recommended by several of the most senior individuals in attendance? 
• Precisely how much of the discussion focused specifically on undertaking research that would benefit patients already diagnosed with stage IV breast cancer?
• We have learned there was a pre-meeting for key participants during which they were told personally, by you, that under no circumstance would any discussion at the summit focus on treatment or research for the already metastasized condition.  Under such a restriction, how did you justify labeling that summit a “Metastasis Summit”? 

We have posed these questions before with no response.  Your expedient response to this letter is requested. 

Respectfully,

CJ (Dian) Corneliussen-James, President
METAvivor Research and Support, Inc.

(i) NBCC's White Paper, 1st Bullet, 4th paragraph

(ii) NBCC's White Paper, 3rd Bullet, 3rd paragraph

(iii) NBCC's White Paper, 3rd Bullet, 6th paragraph

comments powered by Disqus