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Fran Visco

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Why Does Accountability Matter?

Posted: 07/24/2012 4:33 pm

We hear a great deal about accountability. We want leaders to be accountable to their constituency and other individuals to one another. In the world of breast cancer, the word gets thrown about often. But what does that actually mean? If we are to end breast cancer by January 1, 2020, all stakeholders must be held accountable for making it happen. So the system, our leaders, all individuals have to understand their role, follow an overarching agenda to do what is best to end breast cancer, play a part in achieving the goal and be transparent about what they are doing and why. At the National Breast Cancer Coalition (NBCC), we have been calling for accountability from all stakeholders long before we set a deadline to end this disease. We cannot achieve our goal without it.

Not one of our political leaders would disagree with the goal of ending breast cancer. You probably see a number of government officials -- local, state and national -- who pin pink ribbons to their lapels and show up to cut the ribbon to open the new breast care center. I have spent many hours in congressional offices across from a senator or representative who was wearing that ubiquitous breast cancer symbol as I talked about what we need the government to do to help end breast cancer. While we can assume that every member of Congress, the Administration and state and local governments wants to see an end to breast cancer, the real question is this: What are they willing to do to get there? How do we hold them accountable to their expressions of support?

We have done research to answer that question and reported the results to the public in our 2011 Progress Report, "Ending Breast Cancer: A Baseline Report." Since NBCC began in 1991, "more than 830 resolutions and bills with the words 'breast cancer' have been introduced in the US Congress. Of those, 11 resolutions were agreed to and 42 bills became law." (p. 9) Many of those new laws authorized some type of breast cancer awareness activity, like the one that authorized the illumination of the St. Louis Gateway Arch in pink during October. Let's be clear -- lighting up the St. Louis Arch with pink bulbs will never keep a single person from getting breast cancer. It's a gesture like those lapel pins. But it has no real meaning to the hard work necessary to end breast cancer.

At the same time Congress authorized the Arch lights, they did not pass NBCC's Breast Cancer and Environmental Research Act (BCERA), which would have established a grant program to launch a national strategic approach to studying the potential links between the environment and breast cancer. BCERA would have supported a new research model to ensure that public funds were spent responsibly and strategically, moving away from isolated research approaches and toward increased accountability.

More than a decade ago, NBCC advocates insisted that a federal screening program be "accountable" to thousands of uninsured women with a breast cancer diagnosis who were left to fend for themselves once their cancer was diagnosed. They conceived of and helped craft and enact the Centers for Disease Control and Prevention (CDC) Breast and Cervical Cancer Treatment Act, which expanded access to care for underserved and uninsured women. The landmark legislation was signed into law in October 2000. Being held accountable has truly mattered to thousands of women who have benefited from this kind of meaningful legislation.

And what about the billions of dollars invested in breast cancer over the past decades? Who do we hold accountable for that investment actually helping women and not just careers and the bottom line? This May, NBCC advocates held more than 400 meetings with their members of Congress on Capitol Hill. Advocates highlighted the urgency around the introduction of the Accelerating the End of Breast Cancer Act, which will leverage decades of investment to bring innovation and accumulated knowledge to a plan to end breast cancer. Within weeks of these meetings, Senator Sheldon Whitehouse (D-RI), along with Senators Grassley (R-IA), Brown (D-OH), Collins (R-ME), Shaheen (D-NH), Murkowski (R-AK), Warner (D-VA) and Heller (R-NV), introduced legislation, S. 3237, aimed at ending breast cancer. Similar legislation, H.R. 3067, was introduced in the House of Representatives last fall by Reps. Karen Bass (D-CA-33) and Rep. Charlie Bass (R-NH-2) and currently has nearly 230 bipartisan cosponsors.

When enacted, that law will focus on two areas: the primary prevention of breast cancer and preventing breast cancer metastasis, or the spread of the disease to other parts of the body, which is responsible for more than 90 percent of breast cancer deaths. When passed, the law would create the Commission to Accelerate the End of Breast Cancer comprised of several carefully selected representatives of biomedical research, business, breast cancer advocacy and other disciplines who have demonstrated an ability to be innovative, creative and strategic. The bills include a sunset date and are designed to make certain the Commission does not become another bureaucracy. Members of this Commission would be held accountable for their work. We are holding Congress accountable for theirs.

When we launched Breast Cancer Deadline 2020® almost two years ago, we took inventory of breast cancer research, treatment, prevention and policy, along with the advocacy world. We were faced with the reality that in 20 years, there had been very little progress. It is time to hold everyone -- and ourselves -- accountable.

 

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We hear a great deal about accountability. We want leaders to be accountable to their constituency and other individuals to one another. In the world of breast cancer, the word gets thrown about often...
We hear a great deal about accountability. We want leaders to be accountable to their constituency and other individuals to one another. In the world of breast cancer, the word gets thrown about often...
 
 
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01:56 PM on 08/01/2012
Wonderful article and admirable goal to prevent breast cancer by 2020. I'm a recent survivor of Inflammatory Breast Cancer (IBC) and read your 2011 progress report which misses one enormous fact: Page 62 of your report states that in March 2010 it was determined by your panel of experts that a vaccine to prevent breast cancer was feasible and that's true. However, by then Dr. Vincent Tuohy of the Cleveland Clinic had already developed a the world's first preventive breast cancer vaccine, The Pink Vaccine, which was 100% effective in preventing breast cancer in mice and reducing tumors in mice that had breast cancer. The vaccine is ready for its first phase of clinical trials in humans and awaiting a mere $6 Million to fund this trial.

Why let millions more be diagnosed, why spend millions more on awareness (believe me when I say, we are aware), why march around with pretty pink ribbons when this vaccine is sitting on a shelf in the Cleveland Clinic awaiting funding? Ladies! The human and compassionate gesture at this point is to fund this vaccine and get it into the hands of our physicians so that our children, our loved ones never need to hear the most life altering words I can imagine, 'you have breast cancer'. Prevention is the cure!
02:58 PM on 07/25/2012
Does being held accountable extend to looking at cures that are not patented drugs? It is estimated that "Breast cancer charities" alone raised over 6 billion dollars last year. However when the U of Alberta made a discovery of a simple compound that had no patent, was non toxic and cheap they had to go to the public to raise 1.5 million dollars to do a small but sucesful clinical trial. The discovery is based on the Warburg effect (goggle Otto Warburg)and in the lab it was demonstrated as a sound treatment for Breast Cancer.

Fran Visco states that 90% of breast cancer deaths are caused by metastasis, yet the cancer industry ignores published studies like "Chemotherapies that target Angionesis can increase Matastasis THREE fold" published in the journal Cancer Cell Jan 17,2012, they name drugs like Imatinib, sunitinub "and others", or the 14 year study published in 2010 "surgery triggers outgrowth of latent distant disease in Breast Cancer" yet these treatments are still used today and people question why cancer comes back. There is a website dcawatch.com that has gathered all these journal articles and also the paper published in 2005 "Breast Carcinomas fulfill the Warburg Hypothesis and provide metobolic markers of cancer prognosis". If you want to end breast cancer by 2020, contact the U of Alberta and fund their clinical trial. As long as the Charities continue their close ties to the drug companies a cure will always be just around the corner!
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MissTake1989
Equal means equal, hypocrites.
05:17 AM on 07/26/2012
Posts like this prove the wisdom of the French people in 1789.
03:22 PM on 08/01/2012
Susan, I agree with you, it seems that you need a high profile name or affiliate to be recognized or obtain funding in the breast cancer world.

Dr. Vincent Tuohy of the Cleveland Clinic has developed the world's first preventive great cancer vaccine. It was 100% effective in preventing breast cancer in mice and also effective in reducing tumors in mice that already had breast cancer. The Pink Vaccine is ready for human clinical trials and lacks the $6 Million in funding needed to get it there. I am fortunate that I am a breast cancer survivor but I am beyond astonished that no one has jumped at the biggest hope we've had thus far. The Pink Vaccine needs funding now. We are dying in a sea of pink ribbons.
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Catriona
Wha daur meddle wi me?
01:12 PM on 07/25/2012
I would like to see a similar amount of attention being paid to prostate cancer.
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david mielke
Nebraska liberal
12:52 PM on 07/25/2012
You're making a major assumption that our elected representatives all care about eradicating this terrible disease. Number one, it involves science. Number two, what's the payoff for them? Number three, it involves mostly women. If testicular cancer was as prevalent and deadly, we'd have had a cure decades ago. But for the sake of my daughters, granddaughters, and great-granddaughters please keep up the fight.
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MissTake1989
Equal means equal, hypocrites.
05:19 AM on 07/26/2012
This post is ignorant, in every sense of the word.

Prostate cancer claims more victims and affects more people than breast cancer, each and every year.

Yet, it's almost no funding compared to breast cancer.

So, actually, the EXACT OPPOSITE of your mindless feminist statement is true...as per usual.
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MissTake1989
Equal means equal, hypocrites.
08:54 AM on 07/25/2012
Barking up the wrong tree.

I'm been trying to introduce the concept of "accountability" here for a while...they'd rather drink hemlock.
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Gene Hennigh
10:47 PM on 07/24/2012
Well, when I was in the White House, I accounted everything. I even gave the people a great president in Gerald Ford. But was I appreciated? No, I was not! So, these young fellas today, like Mitt and the like, let them have their way. If I had my way, why, we'd ALL be millionaires! Well, that's all. You won't have me to kick around anymore!