A Tribute to Barbara Brenner: A True Shero

In an earlier post, I wrote about Rose Kushner, wondering why her name and voice had been sidelined in the story of breast cancer activism. If anyone could be considered the heir to Kushner (insomuch as I understand her story), it is my friend and inspiration Barbara Brenner. Barbara put up her final "Healthy Barbs" blog post earlier this week. I will miss her fierceness, passion and uncompromising intelligence. I got to know Barbara as the head of Breast Cancer Action; back then, as I recall, the organization’s motto was, “The Bad Girls of Breast Cancer.” I liked that.

It often took me years of conversations to catch up with Barbara's thinking. She was the one who first talked to me about the over-promise of mammography.  She also talked about the lack of centralized data on cancer patients and  cancer research. That just sounded wonky to me,  ut now I finally get  how critical that work is.

Barbara may be best known for coining the term “pinkwashing" (again, years before anyone really "got it."). Pinkwashing is  when companies claim to care about women and breast cancer by sporting the pink ribbon while at the same time producing products linked to the disease or other threats to public health. There are legions of examples. In my recent Times article I wrote:

Having football teams don rose-colored cleats, for instance, can counteract bad press over how the N.F.L. handles accusations against players of rape or domestic violence. Chevron’s donations to California Komen affiliates may help deflect what Cal OSHA called its “willful violations” of safety that led to a huge refinery fire last year in a Bay Area neighborhood.

During her tenure at Breast Cancer Action, Barbara launched the high-profile “Think Before You Pink” campaign. She was also featured in the recent documentary, Pink Ribbons Inc.

http://www.youtube.com/watch?v=3QPZfcYTUaA

Barbara was first diagnosed with breast cancer in 1993 at age 41; about three years later, she had a local recurrence. Then, after fifteen years of breast cancer activism, she contracted another disease--ALS. Often (and incorrectly as she would tell you) called “Lou Gherig’s Disease,” ALS is a fatal degenerative neuromuscular illness. Barbara wrote a post about this outstanding PSA, put together by supporters of football player Steve Gleason to raise needed awareness, and how it differed from the typical pink-ribbon feel-goodism:  

http://www.youtube.com/watch?v=oxoBl5zZgNM

Discussing the two illnesses on her blog, “Healthy Barbs,” Barbara wrote:

The issues are both different and remarkably similar.

How I think about this illness and how I react are influenced by my years as a breast cancer activist. How people deal with me now makes me think about how people deal with others who are ill. The purpose of this blog, Healthy Barbs, is to encourage people to learn to think in new ways about illness and health and to prompt them to be critical of the mainstream coverage of health issues.

It’s not meant to be comfortable. It’s meant to make people THINK!

That is Barbara: it's not about making nice. It's about understanding, thinking, getting stuff DONE.

The last communication I had from Barbara was on May 7 in the comments to my previous post about Nancy Brinker's 64% pay raise. Barbara wrote: “Actually, Brinker is still the CEO. She will have that title untl Komen hires her replacement. Who in their right mind would take that job if Brinker is still involved? Got me.”

On May 8, just one day later according to her Caring Bridge site, Barbara decided to stop taking nourishment. She continues to take liquids.

I hope she won’t mind that I’m copying part of her final post here:

 I have been blessed to lead a rich life, full of love and culture and travel and work that had meaning for me. I have no regrets except that I got ALS in the first place.

I have met amazing people both in person and on-line. Everyone I have come in contact with has had something unique to offer the world. The world is a better place because these people are or were in it. Some of these people I have mentored (and you know who you are), others have taught me. What I know about all of these people is that I have been blessed to know them, and that they will succeed at what they set their hearts and minds to do.

In the Jewish tradition there is a Priestly Blessing. I copy below it because it is what I wish for all readers of these words:

May the Lord bless you and keep you; May the Lord make his face shine on you and be gracious to you; May the Lord turn his face toward you and give you peace.

Barbara, you have made a difference in my life--and in that of so many others--as well as in my work. Your voice and spirit will always be in my heart. I love you. I will miss you.

 

This picture taken from KQED-radio's "Perspective" series page; Barbara recorded an amazing piece in 2011 called "I Have a Voice"

Did Nancy Brinker Deserve a 64% Pay Raise?

Update: Ok, I changed the headline to this post because it was distracting people.  The new financials for Susan G. Komen for the Cure are out. According to the Dallas News, in 2012, the same year that the organization was roiled by the Planned Parenthood scandal (under Nancy Brinker's leadership and based largely on her say-so), the same year Brinker was forced to step down as CEO in an attempt by the organization to regain public trust, the same year donations dropped as a result of her miscalculations, Komen also gave Brinker  a 64% pay hike--from $417,000 to $684,717. Does that make sense?

Just so you know, a Charity Navigator survey found the median salary for the CEO of a not-for-profit organization to be $132,739.

Also, since Brinker is no longer the CEO of Komen, what is she doing in her "new role" for that kind of dough?

In case you've forgotten, the percentage the organization dedicates to research went down from 29% of revenues in 2008 to 15% in 2011.

I wonder, are the well-meaning Komen supporters "aware" of this?

I  do not want to be perceived as encouraging people to abandon breast cancer as a cause. Quite the opposite. I want your good will, effort, time and money to matter to a disease that has touched so many of us. Please let Komen know what you think about their skewed research allocations and Brinker's inexplicable pay hike. Contact them on Facebook tweet them at @komenforthecure Write or call them at :

5005 LBJ Freeway, Suite 250 Dallas, TX 75244 (1-877-465-6636)

You can change this.

And check out the good work of some of these other groups: Breast cancer Action; National Breast Cancer Coalition; Breast Cancer Consortium; Breast Cancer Fund; Susan Love Research Foundation.

 

Nancy Brinker from the Dallas News: Talking pink, earning green.

"Hippest Town in NJ" Doesn't Read the Bleeping New York Times!

I just got this press release. Made my jaw drop. Did they not know who they were writing to?  I get that Thomas could have missed  my blog post about this event. But come on, Dude. You're in New Jersey. You're a PR guy. The New York Times is your local paper. So let's give him some publicity--feel free to email Thomas at the linke below and tell him what you think of "paint your town pink." I responded by sending both the above links with this note:  "You are REALLY writing to the wrong girl. I think you are wasting people's time and money without doing anything to help eradicate breast cancer."  

From: "Thomas Paolella" <TPaolella@meridianhealth.com> To: "Thomas Paolella" <TPaolella@meridianhealth.com> Sent: Thursday, May 2, 2013 1:00:56 PM Subject: FW: Giuliana and Bill Rancic are coming to NJ to discuss the importance of mammography

Just a reminder about Saturday’s event. If anyone from your outlet is able to attend and share in this special evening we would love to have you.

 

Hi there – I wanted to invite you or someone from your team to cover a truly inspiring event for your publication. I know you don’t traditionally cover local NJ events, but this is something truly newsworthy to a nationwide audience.

 

In just a few short weeks, Meridian Health will host its annual “Paint the Town Pink.” For the seventh straight year, volunteers, committees, businesses, physicians, and local officials will make this event a reality. Everyone joins forces for one common goal; to raise awareness of the importance of annual mammography. Beginning May 1, Paint the Town Pink will cast a wider hue across our area with an expansion that now includes 23 Monmouth and Ocean County towns, making the event the most represented to date. What began as an idea seven years ago has been transformed into a grassroots initiative that is changing lives in very tangible and meaningful ways.

Paint the Town Pink was started by Riverview Medical Center with the goal to encourage women aged 40 and older to pledge to have their annual mammogram, as well as raise funds to provide mammography to the uninsured and underserved in our community. Through a variety of special events and in-store specials from hundreds of businesses, and involvement from community groups, this year’s Paint the Town Pink will be “bigger and Pinker” than ever before!

Last year’s campaign featured the “Men in Pink” and highlighted the men that support the women in their lives. Bill Rancic came to Red Bank, NJ and gave a talk about how he supported Giuliana during her breast cancer diagnosis. Bill had such a positive experience with Paint the Town Pink that for 2013, Giuliana will be coming with Bill and are hosting an event together titled “Little Things” – flyer below. There will be a Pink Media Lounge at around 7:45 p.m., in which members of the media will have full-on access of both Giuliana and Bill and will be able to ask questions, take photos/video, etc.

For more information please visit www.PainttheTownPink.com. I thank you in advance for your consideration. I know you get pitched stories all day long and I appreciate you taking the time to read this. Even if you’re not able to cover the event, a brief mention on your website would go a long way in helping to spread the Paint the Town Pink mission. I know the event is on a Saturday, but it will be well worth it.

 

Thanks again,

Tom

 

Tom Paolella Public Relations Manager Riverview Medical Center Bayshore Community Hospital Office: (732) 530-2282 I Cell: (848) 203-7596

 

Make Komen Feel the Squeeze....

I was tempted to headline this "Komen: What a Bunch of Boobs!" But that seemed in poor taste..... In my piece in last Sunday's NY Times Mag I wrote that after our interview (interesting timing) Komen finally took off its homepage the misleading stat about the benefits of mammography.  Steven Woloshin and Lisa Schwartz had called them out originally in their excellent "Not So" series in the British Medical Journal. According to the ever-brilliant Gayle Sulik at Breast Cancer Consortium, however, you can still find the stat displayed elsewhere on Komen's site.

Maybe the PR folks just overlooked this one instance as they hastened to expunge the embarrassing evidence of science denialism from the site. But Sulik notes,

As Komen’s bold messaging continues to be erased from its materials if not from collective memory, is it enough for the group to simply step back and quietly disassociate from a misinformed pro-mammogram campaign?

Yeah-what she said! How can Komen deflect, disassociate from and deny the impact of their role in over-selling mammography when, according to Sulik's "short list" they continue to perpetuate it in their  "educational" materials and affiliate messaging (she points to such items as  "Early detection of breast cancer saves lives and thousands of Orange County women," and “Komen Austin was able to fund over 3,000 mammograms. I think of that as 3,000 lives saved.” ). Click over to the blog post yourself to read what Nancy Brinker just won't stop saying......

Komen is not getting the message. A friend who attended the White House Correspondents' dinner last week told me Brinker was there (don't know why...) and commented, "We'll soldier forward despite the critics." How about learning from a critique, using it to make a better, stronger, more effective organization? On our joint appearance on KQED-radio's Forum last week, after Dr. Laura Esserman urged advocates and the public not to be afraid of change, Komen's representative immediately disengaged by listing  the positive things the organization has done. She clearly has her tried-and-true sound bytes and wasn't going listen, only, like Brinker herself, try to duck criticism by playing the victim.

If you are a Komen supporter--or even if you're not--please keep the pressure on them to provide a truly balanced view of screening, to stop pinkwashing and to put more of their research money--more of ALL their money-- towards prevention, environmental links to cancer, the mechanisms and treatment of metastasis, better understanding of DCIS, social inequities and on and on. Tell them what they've allocated isn't enough.  Meanwhile, there are other groups who need your help--Breast Cancer Consortium, Breast Cancer Action, National Breast Cancer Coalition, Breast Cancer Fund, Susan Love Research Foundation. See which of those moves you and jump on board. 

As Sulik writes:

Mammography has been the rallying cry for breast cancer awareness for decades. And, it has helped to build an economy that focuses not on primary prevention but on the management of risk.

Time to make a change.

 

 

Photo: "This Elixir Won't Fix Her" by Torrie Groening. 

Update: More Komen deflection evident in the comments of this Reuters post on my piece. Really smart responses following....

Memo to the "Hippest Town in NJ:" Please Stop Painting Yourself Pink

Over the past couple of months, I tried to get a number of editors to bite on this story: the town of Redbank, NJ (which calls itself "hippest town in NJ" thereby, ipso facto, making it not) has painted itself pink "to raise awareness of the importance of breast cancer prevention, detection, and treatment." I wanted to take apart the whole premise, possibly doing an annotated "memo" of its press release a la Harper's. Couldn't get anyone to go for it. I was reminded of the concept again today by Anthony Moro, husband of Rachel Cheetham Moro, the  author of The Cancer Culture Chronicles blog (and inspiration to activists everywhere) who died earlier this year of breast cancer.  Rachel died in the hospital sponsoring this event. And she would have hated. it. As Anthony writes on the blog, "painting the town pink":

...doesn't help prevent death from breast cancer. More mammograms don't lower mortality, awareness doesn't cure disease. Mammograms and awareness certainly don't help anybody dealing with advanced disease. Mammograms and awareness don't provide any comfort from my grief, and their pink flags mock me daily.  This stuff is in my face every day, and now it has a gala reception and celebrity appearances.

He is absolutely right. I have written this and written this over and over. Those of you interested in more effective breast cancer advocacy might want to check out Breast Cancer Action or the National Breast Cancer Coalition. Meanwhile, for the record, blow  is my hall-of-shame annotation of the Redbank press release. And here is Rachel's post on last year's "Paint the Town Pink."

 

Hi there –

I know you don’t traditionally cover local NJ stories, but this is something truly newsworthy to a nationwide audience, and any help in spreading the message would be much appreciated. Paint the Town Pink is a community-wide effort presented by Riverview Medical Center in Red Bank, NJ to raise awareness of the importance of breast cancer prevention, detection, and treatment.

They say they are raising “awareness.” Of what? Well, number one, they say of how to prevent breast cancer. If they know how to do that, give them the Nobel Prize immediately: there is no scientifically proven way to prevent breast cancer. There are some things that may reduce risk—such as limiting alcohol consumption, avoiding hormone replacement—but prevention? Nope. They seem to be making the common (and detrimental)  mistake of indicating that mammography prevents cancer. It doesn’t. It detects cancer.

Red Bank, in Monmouth County NJ, is regarded by many as "the hippest town in NJ."

Said it before: calling yourself "hip" makes you ipso facto not.

Downtown Red Bank is situated along the banks of the Navesink River where numerous rock stars and movie stars have made their home.

Perhaps some of those hip movie and rock stars will become “aware” of how they’re being used to spend misinformation about breast cancer and do something that actually makes a difference in the fight against the disease.

Six years ago, Riverview Medical Center set forth on a breast health crusade, directed at encouraging women, aged 40 and over, to have their annual mammogram,

The necessity and efficacy of annual mammograms for women 40-49 is highly controversial and does not appear to confer any life-saving benefit. In  2009, the United States Preventive Services Task Force  found that the risks of mammography outweighed the benefits for that age group its guidelines suggest that women in that age group who are of average or low risk discuss the value of their test with their physician. The unquestioning encouragement by Paint the Town Pink, however, would result in big profits for the hospital involved….

as well as to raise money to provide mammography to the uninsured and underserved in the community.

Okay, that’s nice, but more on this later.

 In conjunction with the Women’s Center at Riverview, the mission behind the Paint the Town Pink campaign was to educate women about a very significant fact: that early detection is a woman’s best defense against breast cancer.

 

Stop. Right. There. Early detection a “defense” against cancer? “Defense,” again, implies that it prevents the disease. At best mammography detects breast cancer (and it misses tumors in up to 20% of cases). No responsible authority would say the test prevents it.

But perhaps they mean that early detection is your best defense against dying of breast cancer? Well….maybe. Here's what's important to understand (and what I keep harping on in my articles): You have to look at the kind of cancer mammography catches as well its impact on that cancer. Mammography is very good at finding early stage cancers called Ductal Carcainoma in Situ --which would only become invasive (hence life-threatening) 30% of the time. Yet since medical science does not yet know which DCIS cancer will become invasive all are equally aggressively treated. That means 70% of women with this sort of cancer did not need the disfiguring surgery or radiation they underwent. Nonetheless, pink ribbon advocates count these women as success stories—“survivors” of a cancer that would never have killed them.

The second kind of cancer mammography catches is the one we hope for: the kind that, if caught early, can be successfully treated. For this segment, mammography does indeed save lives. Yay mammography!

The third kind of cancer is the most aggressive. No matter how “early” it’s caught by mammography it is too late. Mammography has had no impact on the death rates from this form of cancer, which is why the actual number of women (and men) who die of cancer today—about 40,000 annually, including Rachel Cheetham Moro—is greater than it was in the 1980s. While the overall death rates  as a percentage of those diagnosed has dropped (again in part because of mammography’s penchant for finding DCIS) The death rate for those with metastatic disease, the kind that will kill you, has not budged.

What started off as just one town (Red Bank), grew into three towns for 2011. For 2012, the number of towns has grown to NINE - making the 2012 event the most represented in the campaign’s history!

 

How nice: 9 towns now spread misinformation.

Many businesses throughout Monmouth County turn their towns into a vision of pink in May. They are enthusiastic about breast cancer education and gathering donations to help women who do not have insurance, or are under-insured. As a member of the Pink community, we have a unique opportunity to integrate this educational message into a woman’s daily routine as she shops and dines at the many businesses in these towns.

Swathing the town in pink and promoting mammography may not do much for women with cancer, but it’s a great way to boost profits for local businesses and make people feel good.

From high-end boutiques offering a “pink tag sale” on Jimmy Choo shoes, to restaurants offering drink specials and “pink menus,” to the Broadway Diner with a hand painted mural about mammography, these towns has embraced the event. We also strive to make the educational process fun through various events. Planned once again for this year is a community-wide kick-off event on May 5th called “Paint Everything Pink. This event draws more than 3,500 community members for a day of education and fun.

The growth of Paint the Town Pink into neighboring towns, the footprint extended in these communities, the expanding volunteer base, the compelling educational messages, the inspirational stories shared...

Pink campaigns tend to focus on what Gayle Sulik, author of Pink Ribbon Blues, calls the "she-roes" narrative: stories of warriors in heels who kick cancer's butt (and look fab doing it). She-roes say what people want to hear: that not only have they survived cancer but the disease has made them better people and better women. It almost goes without saying that they do not contract late-stage disease, nor do they die.

...the creation of the Pink Fund...

The Pink Fund? What does it do?

and the desire by people to be part of something authentic, tangible, and meaningful takes Paint the Town Pink beyond the pink.

People really do want to be involved in something tangible and meaningful. It’s too bad this campaign does not fit that criteria.

Beyond the visually pink landscape, Paint the Town Pink has brought families together, neighbors together, and businesses and communities together, while organically spreading a very important message. After five successful years of Paint the Town Pink activities, funding is now available to cover 250 free mammograms in 2012!

What happens if one of those mammograms finds an abnormality or, God forbid, cancer? Those women will need follow-up procedures, possibly surgery, possibly radiation or chemotherapy or more. If they are uninsured or under-insured who will pay for that care? Free mammograms are nice, but then what?

 

We Need Your Help!

You can help us remind women of the importance of their annual mammogram in a fun and positive way! The idea is truly scalable and customizable. Ideas range from “pale pink” to “fuchsia” in scale.  Here are some examples:

  • Dress a member of your media team in pink in support of our campaign
  • Broadcast the logo in pink
  • Develop medical features about the prevention, detection, and new treatments for breast cancer, and how just because Breast Cancer Awareness Month is not until October, it should not be forgotten about the other 11 months of the year

 

I agree. Breast cancer is an issue all year long.  But extending the dissemination of misinformation and profit-making should not be.

 

I Heart This Campaign

I've been critical of the Keep-a-Breast Foundation's "I Heart Boobies" bracelets campaign. But I also am a person who gives credit where it's due, and I very much like the early style, tone and message of their non-toxic revolution campaign.

I especially hope they focus on educating girls about potential carcinogens in cosmetics--during and just after puberty they are especially vulnerable. And short of questioning the beauty industry  in general, I at least hope KABF can make clean makeup the cool choice. And I'm not talking Cover Girl Clean (for you who grew up in the 1970s).

So we'll see. I'm rooting for them on this one. Though it does seem ironic that all those bracelets will end up as....land fill.

Are You Racing for a CURE? Think again....

Just read on Komen Watch that only 15% of the money YOU give to/raise for the Komen Foundation goes to research. That's a REDUCTION of $17 million since 2010. It's also 4% less than the amount going to their administrative expenses. And the bulk? Goes to "education," which, guess what--nice but won't move that needle even a tiny bit closer to a cure. I think they might need to hear from us..... Here's a pie chart of last year's funding, thanks to The Cancer Culture Chronicles