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Fran Visco

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Why I'm Not Celebrating Breast Cancer Awareness Month

Posted: 10/04/10 11:52 AM ET

October. Another breast cancer awareness month with buildings and bridges aglow in pink. One year since the last one. And around the world another 500,000 women dead of breast cancer. Almost 40,000 in this country alone. Actually, this is the 25th breast cancer awareness month. We are being asked to celebrate that fact - which is symptomatic of the problem. Why do we try so hard to make breast cancer palatable, comfortable, pink? I really don't feel like celebrating.

Twenty five years ago, in the United States, 110 women died of breast cancer every day. Twenty five years and billions of private and public research dollars later, that number is 110. Every day. Not much progress, is it?

What have we been talking about since the last awareness month? We spent weeks and months arguing over whether to screen women once a year or once every other year. The public and media were up in arms because a group of objective experts questioned the benefit and frequency of mammography screening. Should we let women decide what to do? Or should we just tell them? We argued over whether a new drug that shrank a tumor for several weeks but didn't make women live longer, or improve their quality of life -- and had life threatening side effects -- was good enough. Such low expectations. We deserve more.

I don't feel very pink about any of this. I feel angry. I am frustrated at the lack of progress. And I feel used. I have helped convince the government to give billions of dollars in research funding to the worldwide scientific community. I have seen others push to spend billions more in mammograms and billions in awareness campaigns. I have lost count of pink light bulbs. But I haven't lost count of the too many women who have died.

When will we call for an end to this madness? When will we get serious about ending breast cancer?

How about now? It is time. Twenty years ago, after my diagnosis, I joined a group of women who launched the National Breast Cancer Coalition with a mission to end breast cancer. We thought our work would be complete by now. It's not. Over the past two decades I have seen science develop incredible technology that could help find answers and expand our understanding of the disease. It is now time to harness all of this knowledge and all of these tools. It is time for a new approach and a refocus on our goal: not the goal of a new drug or a new way to find cancer. That is just not good enough. The goal needs to be the end of breast cancer. At the current rate of progress it could be 500 years before that happens. And that makes me very angry.

We're setting a deadline: end breast cancer by January 1, 2020. And we have a plan to get there. Many will say it cannot be done. But we have never tried. They will say that science doesn't work that way. Well, it can and it must. It is time. A deadline changes everything.

I know it is controversial to declare a deadline. I know that, to say the least, it will be exceedingly difficult to achieve it. But that is how it should be. There is comfort in arguing over mammograms. We have been doing that for more than 30 years. We know about that, we cling to it, no matter what the evidence tells us. We cheer every new drug as though it were a real breakthrough, though none of them are. We feel safe and somehow hopeful if there are new drugs to take, even if they have little or no benefit. It's time to give up comfort. It's time to give up easy. It's time to give up good enough.

Between now and the next breast cancer awareness month hundreds of thousands of women will die of breast cancer. How many more of these "celebrations" will you accept? It is time to get real about ending breast cancer. Take all of that energy pushing for awareness and let's come together to achieve the deadline. It's time to give up hope and take up action. Get angry. Get motivated. Get on board. Tick tock.

 

Follow Fran Visco on Twitter: www.twitter.com/Deadline2020

 
 
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12:11 AM on 10/15/2010
Here is a Creative, Edgy and Honest take on why to support Breast Cancer Awareness Month - and how to prevent it from happening in the first place:

http://www.youtube.com/wordisborntv#p/a/u/0/8hm250NsUUs
01:08 PM on 10/12/2010
As one who has been living with stage IV (metastatic) breast cancer for over six and a half years, BCAM seems less and less relevant to me. Pink seems dismissive of the seriousness of terminal cancer. Too much focus is on the happy clappy stories and not enough on the reality of 40,000 of us dying annually of this disease. The harsh reality is that mammograms miss 10-15 percent of breast cancers (false negatives), some in this country are priced out of treatment, and good oncologists are not available locally in all communities in the country. It's too bad that Fran's excellent article is seen as too negative or angry by some! Sure, it is better to have pink ribbons and "survivor" language than to go back to the 1950s when people didn't say the words "breast cancer" in public, but pink and "survivor" do not convey the whole story of breast cancer, early detection is not always possible, and living with metastatic cancer is wearing at the best! And it is even harder on my family than it is on me!
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Danielle Kichler
09:58 PM on 10/08/2010
Right now, I don't think the problem is awareness--I'm pretty sure most people know about breast cancer, although not everyone knows that both men and women can develop breast cancer. The problem is prevention first and treatment second.

It utterly galled me to see Kentucky Fried Chicken, a company whose products contribute to cancer, team up with an organization that purports to care about breast cancer. And it also sucks to see Yoplait team up with Komen, as dairy products are just not good for you either.

It's all marketing and pinkwashing.
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garyloewenthal
Vegan / writer / programmer
11:57 PM on 10/07/2010
Cancer is NOT completely beyond our control. For instance, a recent, published peer-reviewed study of identical twins in Scandinavia showed th breast cancer can be attributed three-quarters to lifestyle. Population studies show that in some areas of the world, breast cancer is a rarity compared to the US. And it's not genetics - when people start acquring our habits, their rates of cancer - not to mention heart disease, diabetes, osteoporsis, and obesity - rise. Of course, one can do everything right and still be unlucky, but being able to reduce one's risk dramatically is on par with a "miracle cure' - and it's essentially free. If breast cancer - and other health - organizations refuse to focus on prevention, they're doing a huge and inexcusable disservice to the people they purport to help. This fear that we have virtually no control over our fates is music to Big Pharma, and to KFC, which is now sells you a tiny side order of pink with its cancer-causing fare.
06:18 PM on 10/07/2010
Thanks for another great column, Fran. You speak for me. I do feel some disappointment that 11 years after becoming a survivor and a breast cancer activist, there has been so much money allocated yet so little progress. All women must work hard to pressure our leaders to eradicate this disease. We can do it.

Thanks again for all you do to help so many! Liz
03:36 PM on 10/07/2010
I've been frustrated by this since I was diagnosed with early onset, uninsured and ineligible for Medicaid 11 1/2 years ago. I caught a lucky break about 2 years into trying to pay off my bills and a few involving financial aid along the way during treatment. I am tired of so much money going into breast cancer research, billions in fact, and there are only tiny steps forward in treatments, cures, etc. And most of those treatments have been for the genetic minorities existing in the community of breast cancer, not for most of us who are estrogen receptor positive. Meanwhile, there are so many women fighting this who are uninsured, underinsured or get thrown off their insurance or denied coverage for many common procedures and wind up losing everything. I'd like to see much more of that money going into some kind of fund to help pay living expenses during treatment and medical bills for treatment. I am so sick of all these women in their bright pink tees and companies, all hoping they won't wind up being us to raise research money with nothing for those who need help and support right now. I don't participate. And I made my own tee which will be on my Etsy site shortly called Surviving-Thriving, because that's what I'm doing now and I'm proud of that.
12:45 PM on 10/07/2010
Fran Visco's letter expresses my frustration. Since I was diagnosed 23 years ago I have worked with NBCC and local breast cancer groups advocating for research funding and supporting the women fighting the disease. Now that I've been diagnosed again with metastatic breast cancer, I look back and see how little we have accomplished with all the money that has been spent. We cannot be satisfied with the minimal changes in treatment. It is time to set a deadline and specific targets. My daughter and granddaughter should not face the same threat and virtually the same treatment options in the years ahead.

I am not wearing pink this month. I'm wearing a pin that says:"Say it, Fight it, Cure it Damn it!
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10:32 PM on 10/06/2010
Finally. An October message that makes sense.

Since diagnosis 10 years ago, I’ve been befuddled by the incredible October outpouring of energy, money, and fluff around breast cancer “awareness”. Perhaps 25 years ago it WAS important to bring breast cancer front-and-center, so it was not endured in secret. We’ve accomplished that goal. Women are aware.

It’s PAST TIME to redirect our efforts. Business-as-usual is not working. We know more about the causes, treatment, and even prevention of breast cancer. But we have lost focus and direction.
Each well-intentioned researcher is working hard. But the work is uncoordinated and spiraling off on countless narrow paths. In 10 years, if nothing changes, we’ll know a lot more about many details of cancer. Yet we will still not have come close to stopping breast cancer.

I am proud to join NBCC in demanding action to end breast cancer by 2020.
08:44 AM on 10/06/2010
Thank you, Mizz Visco, for stating what I've been feeling every October. Last year my women friends were encouraged to post on their facebook status the color of their bra to gain awareness and now it is starting again with another 'game' of stating where you keep your bra. I say put your money where your status is and don't trivialize the issue with silly games. I applaud you for your courage at announcing a deadline and thank you for posting such an honest article that is teeming with integrity and goals instead of saccharine, pink banalities full of "hope." What is the BEST way a woman can support your cause? Volunteering? Money donated? Thank you, I have reposted your article.
02:18 AM on 10/06/2010
Also, you're wrong about zero progress in deaths staying the same. The population of America in 1985 was 239 million. The population in 2009 was over 300 million. If the death rate stayed the same - roughly 110 deaths per day - and the population rose by that's *incredible.* That's serious scientific progress. That's a huge cut in the mortality rate, over 20% just according to those numbers, but it's reported that it even higher, near 30% I believe.

That video linked below, www.stopbreastcancer.org, LIES. It mentions that women in 1975 were much lower to be at risk of contracting breast cancer, and it's risen greatly since. In a lie of omission, it does NOT mention that mortality rates have been severely cut.

Deadlines are stupid and meaningless when you are fighting a force beyond your control and complete knowledge.
03:02 PM on 10/05/2010
The National Breast Cancer Coalition has been a leader in asking the tough questions, in insisting on choices based on evidence, in holding unpopular positions. It has been a leader in establishing and implementing the DOD Breast Cancer Research Program which does fund the brightest, most promising new researchers and the most innovative proposals, which other funding agencies turn down because they are too risky.

Yes, strides have been made, but we still, after billions of dollars, are not close to eradicating breast cancer. Yes, the RATE of death is somewhat lower but too many 100s of thousands are still dying. So we're going to try something daring - we're setting a deadline. Risky?? Absolutely! But by gathering the best of all the stakeholders together, just maybe we can see the way to the light at the end of the tunnel!
Having had a 3rd sister diagnosed in the past few months (that's 3 out of 6 sisters), I'm applauding this new bold initiative. Enough is enough! We aren't giving up support for those with the disease, we aren't giving up comforting the bereaved, but we are giving up relying on hope alone to turn the tide. We have remarkable researchers working on the problems, we have knowledgeable advocates to sit at the table. We CAN get this done! We MUST!
12:11 PM on 10/05/2010
I’m with you and the National Breast Cancer Coalition, Fran. Each year I dread October more and more. I’m sick and tired of pink messages promoting pink -ribboned products in a mega market aimed at making us feel positive about breast cancer while we fatten corporate bottom lines. I’m sick and tired of hearing the same chant about “hope” for a cure soon, each and every year. But what I’m really sick and tired of is burying friends who die of breast cancer!
Hope wrapped in pink ribbons is not enough; it hasn’t stopped breast cancer. We need a bold new strategy and a unified will to end this disease. Thank you NBCC for raising the bar! It’s time to harness the collective knowledge gained though billions of dollars of research toward a single goal: the end breast cancer in this decade. Why should we settle for less?
Go to NBCC’s website www.stopbreastcancer.org to learn more.
11:38 AM on 10/05/2010
Once again, the National Breast Cancer Coalition (NBCC) is leading the charge to end breast cancer. NBCC’s “Breast Cancer Deadline 2020” calls for a bold, fresh, substantive strategy to harness every tool we have, and uncover tools we have not yet dreamed of, to end the suffering and death from this devastating disease. Breast Cancer Awareness Month has outlived its usefulness. The frenzy of pink activities confuses the public and does little to end breast cancer. Races and walks are a dime a dozen. Hundreds of well-meaning non-profit breast cancer organizations focus on increasingly narrow aspects of the disease, while losing sight of the goal. Research is uncoordinated, despite billions of dollars raised in the past twenty years. The contribution of “more screening” is marginal, at best, and harmful to some. Despite twenty years of “Breast Cancer Awareness,” this disease continues to disrupt families and steal lives every day. If you want to make a difference, hang up your running shoes and get behind “Breast Cancer Deadline 2020” http://www.breastcancerdeadline2020.org. It’s time to get this job done.
12:48 AM on 10/05/2010
"Tornadoes have been ravaging this country for decades! They damage property, kill livestock and even PEOPLE! We have spent millions on meteorological advances and look where it's got us! Tornadoes must be STOPPED!"

Doesn't that sound ridiculous? It's exactly how you sound. You are speaking of an ugly, cruel and disgusting force which is completely beyond our control. Do you think you're the first person in history that's decided it SHOULD stop? Everyone in the world will agree. However, it won't be stopped because you angrily insult the importance of education, awareness and HOPE. It will be stopped because scientists work endlessly against the problem. A simple decision is meaningless. This post is meaningless. Actually, this post is counterproductive. With your cynicism and anger, you aim to take away hope. Hope is the one weapon the bereaved have against despair and tragedy. You should be ashamed.

We as a species have no control over this problem, and hopefully that will soon change! However in the mean time, we will not OBTAIN control by getting "angry," "motivated" and "on board." We will gain what little control we can by supporting those who suffer, supporting those who experiment and research, consoling those who are berieved, and educating those who do not know enough about breast cancer. THAT is what this month is about: hope. Don't you DARE demean or dismiss the importance of it. Not for one second.
08:21 AM on 10/05/2010
Oh...such anger in your messge. And, no productive suggestion offered to end breast cancer. You seem to believe that "hope" is the answer. Hmmmm...would that be via a "hope pill" or a "hope IV" or a deerper/wider "hopeful" surgical procedure?
07:58 PM on 10/05/2010
Can you at least understand what I'm saying, before you sarcastically mock my opinion on the importance of hope?

Do you know how truly stupid, naive and ignorant it is to imply that the science world has been sitting on their thumbs, just waiting for an uppity group of people to say "Okay, cure's taking too long, it's time for us to motivate you."

You will not *force* a cure into being. If a cure happens in the next week, month, year or decade, it will not AT ALL be because people got angry about it. It is comically childish to think otherwise.
12:18 AM on 10/05/2010
I applaud Fran and NBCC for taking a stand. Yes, there have been some gains, but they have been painfully slow and incremental. You want mortality rates rather than absolute numbers? Here's what multiple pink billions for awareness, early detection and research have accomplished in 30 years: according to NCI's SEER database, female mortality rates from breast cancer have decreased from 32.5 in 1977 to 22.8 in 2007, age adjusted per 100,000 American women. At this slow rate, it will take over 70 more years before there is an end to the carnage. Meanwhile, as Fran says, there are still 40,000 women dying every single year--just in the United States alone. The pink ribbons and survivor celebrations obscure the reality that metastatic breast cancer remains an incurable, progressive, and ultimately fatal disease. Hugely expensive drugs don't even extend survival, much less actually save lives. How can anyone judge this as success? How long must we wait? Isn't it clear by now that pumping more and more research dollars into a fragmented system won't end this disease, and that more mammography will never be the answer? How can the naysayers be so sure that a clear goal and a concerted strategic effort will not work? We will never know unless we summon the will to try it. Take the first step--go to www.stopbreastcancer.org to learn more.