Gloves Off: What the Fuck, Komen?

Posted on February 3, 2012 by bbzinger

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Feb 3, 2012 Breaking News

It seems that Komen couldn’t take the intense heat and media attention on this one. They announced this morning that they have reversed their position on funding Planned Parenthood. The decision has changed, Komen leadership hasn’t. Nancy Brinker refuses to come clean about what was behind the initial denial of funding. Don’t be fooled. Komen is still right wing.

I swore to myself I would not write about the Susan G. Komen for the Cure Foundation (Komen) again anytime soon. After all, what hadn’t been said already? But Komen has stepped way over the line with its defunding of Planned Parenthood’s breast cancer services. So, here we go.

KFC and Komen: A Warning?

In the spring of 2010, Komen partnered with Kentucky Fried Chicken (KFC) to sell pink buckets of chicken. Nutritionists were outraged: selling unhealthy food to poor people to raise money for breast cancer? Breast Cancer Action launched its “What the Cluck?” campaign in response, encouraging people to contact both Komen and KFC and tell them

This is Stephen Colbert, not a candidate for president

what they thought of the partnership. Thousands of people did just that. Even Steven Colbert got into the act with a riff on the campaign and cause marketing in general..

Komen was so roundly criticized for the KFC partnership that you would think they had learned to be careful when they do things that might catch people’s attention. If you thought that, you thought wrong.

What’s New: Komen’s Planned Parenthood Funding Decision

On January 31, 2012, the world learned that Komen had ceased to fund Planned Parenthood’s breast cancer services; that is, providing clinical exams and mammograms for poor women who otherwise lack access to health care. (That Planned Parenthood calls these “preventive” services is, of course, a misnomer : these kinds of services don’t prevent anything; if they work, they find breast cancer that is already present.)

People are shocked and upset. They should be. What they should not be, however, is surprised.

A Little Komen History

Anyone who has spent any time looking at how Komen works knows that they are the right wing of the breast cancer movement. They are and they stand for the status quo. They push screening when it’s not called for, refuse to acknowledge the limitations of mammograms, support drug companies’ positions at the FDA over the interest of patients, and ignore the realities of breast cancer in favor of pink-a-fying everything in sight.

Here’s a story you may have missed about Komen. Years ago, advocates and activists realized that they had created a federal breast cancer screening program for poor women that guaranteed screening, but no access to treatment if breast cancer were found. A number of groups went to Congress to fix this problem. The Komen organization opposed the bill: if you’re the Komen Foundation, health care is not human right. The bill passed despite Komen’s opposition.

The right-wing nature of the Komen operation is a direct result of the politics of its well known founder, Nancy Brinker. Ms. Brinker is a long time funder of Republican causes, and was a Bush “Ranger” during the George Bush II era, raising thousands of dollars for his election efforts. That money netted her an

In case you forgot, this is George Bush II

ambassadorship, followed by the position of Chief of White House Protocol.

So, no one should be surprised by the Komen move to stop funding Planned Parenthood. But we should look at the history of Komen’s relationship to the anti-abortion movement, and take a close look at the explanation they give for their decision, because it doesn’t pass the red face test. In fact, they are undercutting their own mission with this decision.

Abortion and Breast Cancer: a Moral Position as a Conflict of Interest

For years, anti-abortion activists have claimed that abortion is a major cause of breast cancer. Though there is no evidence that this is true – see an article in The Source, BCA’s Newsletter — the claim persists. There have even been laws passed in several states requiring that women seeking abortions be counseled that doing so would increase their risk of breast cancer.

For years, these anti-abortion people have criticized Komen loudly for funding Planned Parenthood. Search the web for Komen, abortion, and breast cancer, and you’ll see what I mean. Not because of the breast care that Planned Parenthood provides, but because the anti-abortion people wrongly contend that Planned Parenthood is an abortion mill.

Why would Komen cave now to these wackos? Because they saw an opening that would get the anti-abortion people off their backs, and they took it.

Komen’s Rationale for the Planned Parenthood Decision

Leslie Aun, the now silent Komen spokeswoman

Komen spokeswoman Leslie Aun told the press that it wasn’t abortion politics that drove the decision. Rather, it was a newly adopted Komen rule that prohibits grants to organizations that are under investigation by any legal authority.

Since that statement, no one from Komen has given a press interview. But, in classic Komen style, they released an online video of founder Nancy Brinker “setting the record straight,” so they could try to tell their version of events without facing questions. If you can stand it, take a look. Judge for yourself. It’s interesting to me that Ms. Brinker calls the accusations “scurrilous.” That’s usually her mode. Attack the accusers and ignore the underlying issues.

So what’s the real story on the investigation that has been used as an excuse to cut off Planned Parenthood funding? It’s this: Planned Parenthood is being investigated by Cliff

Cliff Stearns, friend of fetuses

Stearns, Republican Congressional Representative from Florida. Are you surprised to learn that Mr. Sterns has a perfect anti-abortion voting record? What do you think prompted his investigation of Planned Parenthood? Dollars to donuts it’s the abortions they provide.

So, Komen adopts a new rule that happens fall right into the anti-abortion snare set by Cliff Sterns. That’s not abortion

The fabulous Fred Astaire

politics? I’m Fred Astaire.

Komen: Undermining Their Own Mission

Komen, as I have written before, is all about screening for breast cancer (see “Don’t Make Promises You Can’t Keep — Especially in Health“). In their efforts to promote screening, Komen has a particular focus on the medically underserved; that is, women who don’t have access routine health care services.

Planned Parenthood affiliates have provided breast screening services to many thousands women who would otherwise not have this care. That advances Komen’s mission. Who will provide these services now? Komen won’t.

The Komen decision was made a day after the CDC announced that screening rates for breast cancer were down, especially among poor women.

Komen has undercut not only its own mission, but the public’s perception of who they are. It’s about time.

Don’t Just Stand There, Do Something

If you’re as outraged as you should be, there is something you can do. Write to the of the Komen Foundation, and tell them what you think of pulling the funding from Planned Parenthood. And get your friends to do the same. Komen won’t talk to the press. Let’s talk to Komen. Liz Thompson is the CEO (sounds corporate, doesn’t it?) of Komen, and he email address is: EThompson@komen.org.

After you do that, go to Breast Cancer Action’s website and sign their petition to Nancy Brinker and Liz Thomson. There is power in numbers.

© Barbara A. Brenner 2012

Posted in Breast Cancer | Tagged , , , , , , | 16 Comments

Pink Ribbons, Inc. is Coming to the US

Posted on January 25, 2012 by bbzinger

The initial screenings have just been announced at http://firstrunfeatures.com/pinkribbons_playdates.html

See it. Tell your friends to see it. You will never think about pink ribbons or breast cancer the same way again.

Posted in Uncategorized | 6 Comments

You Don’t Have to Talk Like Stephen Hawking

Posted on January 19, 2012 by bbzinger

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Stephen Hawking is famous. He should be. He’s a very influential theoretical astrophysicist.

Stephen Hawking

And he’s achieved that fame and influence despite being diagnosed many years ago with ALS.

Hawking’s Voice, Brought to You By Intel

Dr. Hawking can’t talk in his own voice. For the most part, neither can I. Dr. Hawking can’t type either because he’s hands don’t work. So in recent times, he has spoken through a device that translates a signal from a muscle in his cheek into letters, and then words, and then sentences and paragraphs. It’s a wonder of technology, and it’s a good thing.

As is the case with a relentlessly progressive neurological disease like ALS, Dr. Hawking’s cheek muscle is becoming non-functional. But, fortunately for Dr. Hawking, he has a team from the technology giant Intel working to find a new mode of communication for him.

There are thousands of people with ALS who have things they want and need to communicate, but they’re not Stephen Hawking. So Intel isn’t knocking at their doors to offer help. Of course, what Intel develops for Hawking might someday become a technology that will help others — assuming others can afford the cost. But that’s a future that, unfortunately, a lot of ALS patients will not live to see.

Not Everyone Needs Intel, They Just Need Apple

But there are needs that some ALS patients have now that are easy to solve. They don’t require new technology. They just require a little generosity. Which, it seems, is not so easy to come by if the company you need something from is called Apple.

Here’s the thing. There are dedicated devices that convert text to speech for people who

One text-to-speech device

have lost the ability to speak. They are somewhat heavy, expensive, and cumbersome to use, especially if you are a person who has done any typing or word processing n your life.

The iPad (even the iPad 1) — made by Apple, in case you missed that news — is lighter, less expensive, and has apps that convert typed text to speech at the touch of an icon. I’ve been using an iPad since my voice started to deteriorate. Since I can still type, I don’t need to speak the way Stephen Hawking does.

The iPad2 costs about $500 for the basic model, which is a lot, but way cheaper than a

iPad 2. Sleek ain't it?

dedicated text-to-voice machine. (I have the iPad1 and it works just fine.) A blue-tooth keyboard so you don’t have to type on the screen is another $100. There are at least two free apps — from Neo-Speech and Speak It! — that allow you to type whatever you want to say, and have the iPad say it for you in a voice that at least is recognizable as human voice. They both have female and male voices that can be downloaded. The text you type can be saved to be used again, and the voice can be easily amplified (with a plug-in amplifier that costs about $100)..

And, of course, the iPad has other features — email, web access, text — that make it an easy way for people with ALS whose mobility is severely limited to stay connected to the world.

Can Apple Be Generous? Let’s Ask Them

Though the iPad is cheaper than dedicated speech devices, its price is out of the range of a lot of people. So I inquired of my speech therapist about getting Apple to donate iPads for use by people with ALS. I was told it had been tried repeatedly, but never successfully. Seems Apple doesn’t give away its products, despite the profits they amass.

I am helping the Golden West Chapter of ALS Association try to get funds to buy iPads. But there’s an easier way. Apple could donate them. It should.

Tim Cook. Looks like a nice guy.

Tim Cook is Apple’s CEO. According to press reports, he answers e-mails from the public. E-mail him at tcook@apple.com and tell him that you think Apple should donate iPads for use by ALS patients. Let see what he says.

© Barbara A. Brenner 2012

Posted in ALS, Medical Science | Tagged , , , , , | 8 Comments

Tikkun Olam and Corporate Responsibility

Posted on January 2, 2012 by bbzinger

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Tikkun olam is a Hebrew phrase that means “repair and restoration of the world.” This is an obligation that many modern day Jews, myself included, take quite seriously. The world is broken. Who but human beings can restore it to wholeness?

Without naming this concept, I alluded to tikkun olam in a previous blog post about breast cancer as a social justice issue.

Moral Consistency Matters

I know it’s very hard to be entirely consistent and to think about how everything we do is connected to and reflects everything we believe, but I also think we all should try to do it. I think that making the effort helps to restore the world. As Rabbi Tarfon is reported to

No one knows if this is how Rabbi Tarfon looked

have said, “It is not incumbent upon you to complete the work, but neither are you at liberty to desist from it.”

So where does corporate behavior fit in the tikkun olam directive? It could, of course, be argued that corporations are not obligated to repair the world. But since both the US Supreme Court and the likely Republican nominee for President, Mitt Romney, think corporations are people, I want to make the

But this is Romney

argument here that corporations, too, have an obligation to repair the world. After all, it is people who make the decisions about how corporations behave, so it’s not unreasonable to call on those people to make their corporate decisions consistent with social responsibility.

Leviev Revisited – The Larger Corporate Context

Let’s consider Lev Leviev, the guy whose “generosity” is the focus of that previous blog. Mr. Leviev’s companies are engaged in practices that, by almost any measure I can think of, do the opposite of healing the world. At the same time, his foundation gives large amounts of money to the Breast Cancer Research Foundation. If Mr. Leviev were truly interested in healing the world, he would make his corporate

Lev Leviev with Vladimir Putin

practices consistent with his charitable giving. His diamond companies would not engage in human rights abuses of their African workers, for example. (For more on Leviev and the kinds of things his philanthropy supports — some of it anti-abortion and anti-gay — see www.nytimes.com/2007/09/16/magazine/16Leviev-t.html.)

Is it possible for corporations to make money and at the same time repair the world? Sure. Companies that make products that actually help people who are sick or disabled make money. If they make their products in a way that doesn’t

— undermine their workers’ health or safety or economic well-being, or

— harm the communities in which they are based,

and if they guarantee that their products are available to everyone who needs them at an affordable price, I would argue that they are healing the world.

There are some businesses practices that should never be allowed — exploiting child workers, sex trade, violating clean air or clean water regulations, defrauding others, just to name a few examples. Engaging in them, no matter what your business is, would, in my view, be inconsistent with tikkun olam.

Some of the harder questions have to do with corporations engaged in producing things that are arguably not good for society, though we will never all agree on what they are. I would put guns in that category, but others wouldn’t. Some people would put the exploitation of fossil fuels in that category; others would not. So how you might see this issue will depend a lot on where you stand on socio-political issues.

But let’s go back to Lev Leviev. Whatever you think about diamond exploitation, treating your workers in a way inconsistent with basic human rights cannot be anything but inconsistent with tikkun olam. And making a big donation to a breast cancer organization doesn’t make the abuse of human rights forgivable. I think tikkun olam requires Mr. Leviev to correct his company’s human rights behavior. There are no short cuts here.

Walmart’s Reputation on the Line

Another example that has come to my attention lately has to do with Walmart. You know this company. It’s huge. It sells things cheaply. It doesn’t treat its workers or suppliers very well at all, and the company’s location decisions often devastate local economies.

If you have managed somehow to miss all the bad news about Walmart, a few hours of media will catch you up. I particularly recommended two reports: a documentary made about the impact of the company’s store location practices called ” Walmart: The High Cost of Low Price” (http://www.walmartmovie.com/) and one of the films from a Frontline series called “Is Walmart Good for America?” about how Walmart pressures it’s suppliers, entitled “Muscling Manufacturers” (http://www.pbs.org/wgbh/pages/frontline/shows/walmart/view/).

Walmart knows its reputation for social responsibility is not very good. Rather than change their behavior to improve their practices — and their reputation — the Walmart Foundation tries to buy peace. The company previously tried an environmental ploy by promising to buy land to restore wetlands. Now Walmart is trying to prove that it cares about women’s economic security by funding women’s foundations to do economic empowerment work. I’m sure the money is tempting, but women’s foundations should no more let Walmart use them to look good than the Breast Cancer Research Foundation should give cover to Leviev’s corporate behavior.

Whether it’s Walmart or Leviev or any other person or company, the short cuts to tikkun olam don’t work. If corporations want to behave as if repairing the world matters, they should conform their actions to advance that goal. They shouldn’t be allowed to buy peace. And they can’t buy the restoration of the world.

I go back to Rabbi Tarfon, who said, “The day short, the labor vast, the toilers idle, the reward great, and the Master of the House is insistent.” If we’re going to repair the world, we all — individuals and corporations — will have to be a little — or a lot — more consistent. Whether we’re trying to please ourselves, our communities, or God, the demands of tikkun olam point in only one direction.

Thanks to Rabbi Margaret Holub for her help advancing my thinking on tikkun olam.

© Barbara A. Brenner 2011

 

Posted in Environmental Health, Uncategorized | Tagged , , , , , , , , , | 2 Comments

IOM Report on Breast Cancer and The Environment: What Komen’s $1 million Bought

Posted on December 20, 2011 by bbzinger

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The IOM logo

Early this month the Institute of Medicine (IOM), an arm of the National Academy of Sciences, released a report on environmental links to breast cancer. The IOM describes itself as “an independent, nonprofit organization that works outside of government to provide unbiased and authoritative advice to decision makers and the public.”  In this case, the IOM was given $1million by the Susan G. Komen for the Cure Foundation (Komen), which asked the IOM to “review the current evidence on breast cancer and the environment, consider gene-environment interactions, review the research challenges, explore evidence-based actions that women might take to reduce their risk, and recommend directions for future research.“

By defining “environment” broadly to include lifestyle factors, the IOM report covers both

The IOM's report

involuntary exposures (those that require policy changes to control) and voluntary exposures (such as smoking and diet, including alcohol consumption), and focuses its risk reduction recommendations on the latter. (The IOM “Opportunities for Action” document is all about how women need to protect themselves.) These recommendations will only reinforce the inclination of women to blame themselves when they get breast cancer.

The results of the report are hardly either surprising or overwhelming. In fact, the report repeats what has been known for over a decade. The IOM summarizes its conclusions this way: “Overall, the IOM finds that major advances have been made in understanding breast cancer and its risk factors, but more needs to be learned about its causes and how to prevent it. The report urges a life-course approach to studying breast cancer because new information suggests that women and girls might be more susceptible to some risk factors during certain life stages.”

The life course approach has been advocated for a long time. The National Institutes of Health Breast Cancer and the Environment Research Centers have been funding this kind of research since 2003. So, the IOM report does not break new ground. Worse, it is silent on policy changes required to reduce involuntary exposures to toxins that may be contributing to the skyrocketing rates of breast and other cancers.

We should not be surprised. Here’s why.

A Little Background

When I was ED at Breast Cancer Action, Komen spent half a million dollars for a review of all the published scientific information on environmental links to breast cancer. That review, conducted by the Silent Spring Institute, was published in June, 2007 in the American Cancer Society’s journal Cancer. For people concerned about the issue of environmental links to breast cancer, it was a watershed moment. The study was widely reported and applauded. Many researchers took to heart the ideas presented about how to approach more studies in the field.

In December, 2007 — the year of the Silent Spring study — I met with the then-CEO of Komen, Hala Molddemog, and the organization’s then-policy director, Diane Balma. (Molddemog left Komen to become president of Arby’s Restaurant Group. Enough said.) My intention was to thank them for funding the report and explore ways Komen and Breast Cancer Action might work together to advance its recommendations.

I started the conversation by thanking the Komen reps for funding the Silent Spring study. Ms. Molddemog responded by asking me if anyone was finding it useful. It was clear to me from the question that Komen had funded the study but not followed its publication or use. How sad.

The reason that Komen has been so reluctant to look at chemical exposures is not hard to discern. Komen’s corporate partnerships are well known to most people in the breast cancer world. Komen is basically a wholly-owned subsidiary of corporate America. But not many people have thought about how those connections – to companies like Ford Motor Company, for example – inhibit what research Komen might be willing to do on toxics that are linked to breast cancer that come out of the tail pipes of cars. A very few people have even noticed that Komen is marketing a perfume called “Promise Me” that contains known or probable carcinogens.

The Radiation Connection

There are very few things that we can say with certainty cause breast cancer. One of those things is ionizing radiation. Not that everyone exposed will get breast cancer, but the risk goes up with exposure, and we know the biological mechanism of the process.

While the IOM report urges individuals to reduced their exposure to medical radiation, it says nothing about policy changes to reduce everyone’s exposure to this risk, including re-thinking our approach to routine breast cancer screening using mammography, which is radiation based.

Komen is the biggest promoter of more and more mammography. This fact, and the fact that Komen funded the IOM report, may explain why there is no recommendation in the report for the medical community to monitor and limit radiation exposures.

Which brings me back to my meeting with Moddelmog and Balma. When I suggested in 2007 that Komen and Breast Cancer Action might work together to encourage women to track and limit their exposure to ionizing radiation, I was immediately told that was a non-starter, because doing so would discourage women from getting mammograms.

The irony here is that all three of us in the conversation had had breast cancer, all three had had regular mammograms, and in none of our cases was the breast cancer found by mammogram.

So whether it’s radiation or toxic chemicals, Komen is boxed in by its positions and partnerships. And that means that no report funded by Komen will ever recommend actions that challenge the profitability of its corporate partners or suggest that the organization re-think its core message about mammograms. That also means that as long as Komen dominates the conversation about breast cancer, the rest of us are pretty much screwed.

Independent Research? Not By A Long Shot

With that background, consider how the IOM is constrained when it gets funding for its research from an organization like Komen. When Komen defines the research question as broadly as it did, the research results are destined to look as they do: like a repeat of all we already know.

Where Do We Go From Here?

Komen, having purchased with $1 million just the kind of advice it wanted, says it will now

Is there anything $ can't buy?

invest in the kind of research called for by the IOM report. But, because the report includes so many things as “environmental,” it will be entirely possible for Komen to invest in research of anything but toxic chemicals.

Already, Komen has spent $1.5 million on research into what the research agenda should be. The IOM report gives Komen just the cover it wanted to avoid looking at involuntary chemical exposures as a culprit in the breast cancer epidemic.

It’s time for a change. Email Liz Thomspon, CEO of Komen — EThompson@komen.org — and tell her you want Komen to invest in research on chemicals that may be linked to breast cancer.

And contact the Institute of Medicine at iomwww@nas.edu to tell them what independent research means to you.

© Barbara A. Brenner 2011

Posted in Breast Cancer, Environmental Health | Tagged , , , , , , , , , , | 10 Comments

Social Justice: The Health Connection

Posted on December 5, 2011 by bbzinger

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In my mind, health issues are issues of social justice. This perspective sets Breast Cancer Action apart from most other breast cancer organizations and is the lens through which I see all matters of health. Everything is connected. I believe that if we recognize those connections and address the challenges they pose, the world will be a better place.

Breast Cancer Research Foundation: Missing the Environmental Connections

BCRF Cosmetics sold to raise money for breast cancer research

I wrote during October (Breast Cancer Industry Month) a few words about the Breast Cancer Research Foundation (BCRF), its connection to the Estee Lauder Cosmetics Company and the company’s refusal to remove carcinogens from the products they sell to raise money for BRCF. I directed readers to the Campaign for Safe Cosmetics for more information about this issue.

The phenomenon of companies’ supporting breast cancer organizations or research while at the same time engaging in practices that are detrimental to health or social justice is called “pinkwashing.” .There are many examples, and the scope gets bigger and bigger as companies see that supporting breast cancer is the best way to look like a socially responsible player. The Komen Foundation is the queen of the practice, but BCRF is close behind.

The safe cosmetics issue is, as it turns out, not the only part of social and environmental justice that BCRF doesn’t get. I imagine most people know that drilling for oil is both

Drilling oil for breast cancer resarch. Oy.

damaging to the environment and ignores the need to find energy sources that won’t be depleted over time. But that doesn’t stop BCRF from taking money from an oil drilling operation. I really can’t make this stuff up.

BCRF and Israel: More Missed Connections

Evelyn Lauder, the recently deceased founder of BCRF was Jewish (as am I, as I explain in greater detail below). Her relatives are very involved in Jewish causes like promoting Jewish education. See, for example, the work of Laura Lauder, who married into the family and is widely regarded for her work in Jewish education (and serves on the board of the National Public Radio Foundation, no less).

While it may be very easy to applaud support of programs like Jewish education, ties to Israel-related causes can be considerably more complex given the heated passions stimulated by the Israel/Palestine conflict.

So imagine my surprise to see an email recently from a group called The New York Campaign For The Boycott Of Israel calling on the BCRF to sever its ties with Lev Leviev and stop accepting funding from his LVD Foundation.

Who is Lev Leviev? He’s a diamond mogul (see http://leviev.com/#/home.php) whose

Lev Leviev

companies have been engaged for years in building Jewish settlement housing in occupied Israeli territory, in violation of international law. His diamond operations in Angola and Namibia engage in human rights abuses of workers. He is also a man who thinks that if he gives to good causes like breast cancer, no one will notice what harm he is causing.

A Few Words About Israel and Anti-Semitism

There are many Jews (myself included) who support the existence of Israel as a Jewish State but believe that Palestinians also have a right to a secure state in the region. Such people are not anti-Semites, though they are often so characterized by those who believe that any criticism of Israeli policy is anti-Jewish.

I believe that if peace has a chance in the Middle East, that chance is completely undermined by extending illegal Jewish settlements into territory that should at least be considered for Palestinian Statehood.

Tell BCRF To Stop Taking Money from Leviev.

All social justice issues are connected. We can’t say we care about one and ignore all the others and hope to see more justice in the world. I do not support a general boycott of Israel, but I do believe that Lev Leviev should not be able to buy good will by supporting BCRF while his companies act as they do in Israel and elsewhere. Nor do I think that BCRF should give Leviev the cover of social responsibility if it cares about health.

If you agree with me, write to BCRF at bcrf@bcrfcure.org and direct your message to the attention of Myra Biblowit, CEO of BCRF. And find Laura Lauder (the one who lives in Atherton) on Facebook and send her a message.

The power of ordinary people to create change by doing simple things should never be underestimated.

© Barbara A. Brenner 2011

 

Posted in Breast Cancer, Environmental Health, Health Policy | Tagged , , , , , , , , , , | 8 Comments

Can We Watch Our Language, Please?

Posted on November 24, 2011 by bbzinger

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I have spent a lot of my adult life trying to change the conversation around health issues. The first step in that process is to look at the meaning of words in common use. If those words don’t convey what we think they do, it’s important to rethink them, and to use other words. A great example is the word “prevention” in the context of breast cancer. Since there is no guaranteed way to keep from developing breast cancer, anything offered as doing that or promising that outcome is, to say the least, inaccurate. It would be more accurate to talk about “risk reduction.”

Now that I have ALS — a devastating, relentless and pernicious disease that is robbing me of my ability walk and talk (before it robs me of all my other functions) — other words and phrases capture my attention.

My very first blog — https://barbarabrenner.net/?p=20 — tackled one of these phrases: “How Are You?” While I won’t rehash what I said there, I do want to talk about other things that are part of common parlance in English, but that maybe wouldn’t be if we thought more about what they mean. My examples today are the phrases “I’m dying to . . .,” and “Be well.”

Are You Really Dying to Do Anything?

Wanting to be erudite about the phrase “I’m dying to . . .,” I sought Google’s help in discovering the source of the phrase. Unfortunately, this is one occasion where a Google search failed me, but I did find lots of examples of the use of the phrase. Here are few choice examples:

— “I’m dying to travel the world”

   — “I’m dying to see a movie”

— “I’m dying to hear what you have to   say”

— “I’m dying to be beautiful”

Wikepedia describes the phrase as hyperbole. I think that’s an understatement. If you look at these phrases you will notice that the goals set out will be impossible to achieve if the speaker is dead. As a dear friend said to me, why would the deepest expression about longing be about death and not about living? So why don’t we say, instead, “I’m living to . . .”

I realize that because I know that I am dying (not tomorrow, but sooner than I thought I would be and sooner than I lot of people I know are likely to be) and know what will kill me, I may be a little oversensitive to the phrase “I’m dying to do . . . .” But really folks, is there anything so important to you that you want to die to achieve it? And even if there are one or two things that meet that threshold, it can’t be that most things do.

How about, “I can’t wait to . . . ,” or “I’m glad to be alive so that I can . . .” as better phrasing? Next time someone says to you “I’m dying to . . . ,” ask them what they really mean.

Be Well With an Incurable Disease?

And then there are the related phrases that we American English speakers seem to toss off at the drop of a hat: “be well,” and “I hope you are well.” I can’t tell you the number of emails I get from people who know my situation that start or end with “I hope this message finds you well,” or “be well.” They are matched in number by the number of times I part company with friends who say, “Be well.”

In my better moods, I usually respond to the “I hope you are well” inquiry with something like, “I’m as well as I can be given that I have an incurable disease,” followed by the winking emoticon ;-).

But I am much happier when people hope I’m having a good day (a phrase that, long ago, seemed like the epitome of bland saccharin, but now seems to be the preferred alternative for me) or urge me to take care (which I do) rather than wishing me something I will never experience again.

I understand that most people are not faced at this moment with an incurable and fatal illness, and that often “I hope you are well” or “be well” are perfectly appropriate wishes to extend to folks. But, if you know something about someone that makes these phrases inapt, please think twice before you say them.

© Barbara A. Brenner 2011

 

 

 

Posted in ALS, Illness | Tagged , , , , | 18 Comments

Nothing Should Have to Be This Hard

Posted on November 12, 2011 by bbzinger

I’m in touch with a lot of people about health issues. I continue to be amazed by the range of needs that people have, and how hard it is to meet them. But some of the issues that come to my attention strike me as so simple as to be true no brainers. I want to write here about two examples, one from the ALS world, and the other from breast cancer. I will be interested to read what readers of this blog see as other issues in health that can be easily solved, but, tragically, are not.

Donating Sick Time for A Cop with ALS

The township of Greenwich, Connecticut has a Collective Bargaining Agreement (CBA) with its police force. Under the terms of that agreement, police officers are allowed to donate some of their accumulated sick time to help other officers who are ill but have used up their sick time. Roger Petrone, a Sergeant in the Greenwich police department, was diagnosed with ALS at the age of 37 in 2007. This year, as Sgt. Petrone was about to deplete his remaining sick time, he sought to use time donated by his colleagues under the terms of the CBA. The Township took the position that, despite the terms of the CBA, Sgt. Petrone would have to retire and be left to his own financial resources as he struggles with ALS.

Under pressure from his colleagues in the police department and from the ALS

Sgt. Petrone with his daughter

community, Sgt. Petrone won his battle with the Township. The Selectmen backed down on their threat to deprive the Sergeant of his rights under the CBA.

My question is why it should be so hard, when the rules, as they often do, allow people to use sick time donated by their colleagues for people to take advantage of them? While there may be issues that need to be anticipated with donated sick time programs, many institutions have done so successfully. Just google “donated sick time programs” and you’ll see what I mean.

When people are sick, it shouldn’t be so hard to get the kind of help to which adopted work rules entitle you, should it?

Space for a Support Group for Women With Metastatic Breast Cancer

At the end of October, Nancy Brinker of the Susan G. Komen for the Cure Foundation gave

Nancy Brinker, in pink of course

one of her classic defenses of all things pink by pointing out that more pink is needed as long as women are too poor to afford both housing and breast cancer treatment, or have to choose between spending money on bus fare to get to treatment or feeding their families. Ms. Brinker overlooked two things in her analysis. The first is that the women she describes don’t need pink, they need money. And the second and more telling thing she overlooked is that her organization, the richest breast cancer organization in the world, doesn’t give funds to the very women she describes or do much to address the challenges these women have.

There’s group of patients with metastatic breast cancer who meet for support in Austin, Texas, not far from Komen’s headquarters in Dallas. The group, called the IV League, meets once a month, and needed funding for rent for a space for their meeting. We’re not talking big bucks here. But the Komen Foundation refused to fund the need.

If Komen really cares about breast cancer and about the needs of women with metastatic disease, they could fund the IV League’s rent out of petty cash. Really, this shouldn’t be hard. Why is it?

Other examples?

I’m sure there are tons of examples in health care of things that should be simple but aren’t. What are your favorites? And have you seen any solutions that address them? I invite you to post responses here for everyone to see.

© Barbara A. Brenner 2011

 

Posted in ALS, Breast Cancer, Illness | Tagged , , , , , , | 17 Comments

Is October Over Yet?

Posted on October 29, 2011 by bbzinger

October is often a beautiful fall month. It’s also my birthday month. But I learned early in my tenure at Breast Cancer Action to dread the month because everything turned pink. I had hoped that when I stepped down from my job, I could get back to having October just be a month. But once a breast cancer activist, I guess always one. So I still feel inundated in October.

Pinktober

This month has so far been no exception. It’s hard to decide what the worst offender was among the things that turned pink this month. Was it the garbage truck for the cure in

Garbage for the Cure

New York City? Was it the oil rig painted pink? Was it the Lord & Taylor “Pink Carpet of Beauty?” Was it American Airlines (the only airline currently losing money) Fly for the Cure effort? Or was the winner the pink cleats on those NFL football players as they pummeled each other on a recent Sunday? Or maybe it was the Komen for the Cure

Pink Cleats for the Cure

Foundation’s “Promise Me” perfume, laced with a lot of ingredients that are known to increase the risk of cancer (you

From Komen: the ingredients could kill you

can act to stop this one at http://thinkbeforeyoupink.org/).

Maybe you have a favorite in the “how low can we go with pink” contest. If you do, send to Breast Cancer Action so it can be used in the organization’s Think Before You Pink campaign.

A Ray of Sanity from the New York Times? Sadly Not.

I don’t read the Sunday New York Times in October or any other month. I won’t spend the kind of time it requires to read it carefully. I figure that if there’s a important article in it, a friend will tell me about, or I’ll stumble on it in the iPad New York Times app. But, probably because of my background, I did quickly find an article published by the Times on October 15 which gave me a little hope that we would finally have an in-depth investigative report about the pinking of America. After all, the new (and first female) executive editor of the paper says she’s dedicated to having more investigative reporting.

Entitled “Welcome, Fans, To the Pinking of America,” the article by Natasha Singer appeared, appropriately enough, as the lead story in the paper’s business section, So far, so good. And early on there are acknowledgements that not everyone likes the pinking of everything. But it becomes quickly clear that the article is about how successful the Komen

Komen's ribbon dances

Foundation has been in making breast cancer into a multi-billion dollar marketing opportunity to support mammography screening and breast cancer education, and not about how this effort has left most of the public completely in the dark about the realities of breast cancer.

The article quotes Nancy Brinker, the founder of Komen as follows: “It’s a democratization of a disease. It’s drilling down into the deepest pockets of America.” So this is what democracy means, getting money out anyone you can find? Funny, I thought it meant people participating in the political process by which decisions that affect their lives are made. How did we get to this?

I blame the Komen Foundation, the leading but not the only beneficiary of products sold with pink ribbons on them. It is Komen that has, in the article’s words, “rebranded an entire disease by putting an upbeat spin on fighting it.” And it’s done that by marketing, and by drilling into the buying public messages that are wrong-headed in the extreme. Those messages range from how much progress has been made in breast cancer to how mammograms are all anyone needs to know about breast cancer.

One thing that the New York Times article makes clear is that, while consumers are encourage to buy products to support breast cancer research, Komen spends twice as much on education as it does on research. So if you think that by buying pink you’re funding research, think again.

I won’t attempt to summarize the rest of the New York Times article, since it mostly a promotion of Komen’s approach. While it mentions that Komen’s message may oversimplify breast cancer issues, it hardly says why or how.

Words from Komen: Same Song, Different Verse

While Pinktober was raging and the buying opportunities mounted, I was the unhappy recipient of a fundraising letter from Komen. Seems the millions that the Foundation raises from corporate partnerships isn’t enough, so they do a lot of direct mail. The letter contains the following statements:

— Komen funds “research dedicated to conquering breast cancer at every stage – from the causes to the cures”

—  “Our single minded focus [is] on finding the cures”

—  “We’re working 24/7 to find the cures for breast cancer

—  “Imagine life without breast cancer.”

Most of the letter focuses on how much Komen funding has accomplished and how  Komen is going fund the cures for breast cancer if I write a big check (not). But what does it mean

Komen has invested billions: for what?

to “imagine life without breast cancer”? I don’t know how I can do that with so few resources devoted to finding and eradicating the causes of the disease. And while the letter mentions in passing that Komen funds this kind of research, I know for a fact that it is a very small part of the Foundation’s portfolio, and that they ignore many of the findings that come from that research. The Foundation’s information about environmental links to breast cancer is flat out wrong in a lot of places.

At the invitation of someone associated with an organization called the Breast Cancer Sisterhood, Komen agreed to respond on a blog hosted by the Sisterhood to questions and criticisms raised by others in the breast cancer “community.” The person who wrote on behalf of Komen is the “Director of Marketing and Communications.” Though there was supposed to be a give and take with the Komen representative, she (the Komen rep) posted one message defending Komen and failed to answer many questions. As far as I can tell she hasn’t responded to subsequent comments. Read it yourself by following the link. So much for dialogue.

And Komen is not alone in claiming the ground of funding all the progress in breast cancer.

Another version of the ribbon

The Breast Cancer Research Foundation (BCRF) took out a couple of full page ads in the New York Times to tell people how so much of the progress in breast cancer it has funded. It reads a lot like Komen’s claims. Of particular note to me is that much of the funding for BRCF comes from not just pink products but directly from the Estee Lauder Companies. They make cosmetics and they founded BRCF, which is committed to “prevention and a cure in our lifetime.” The first part will be particularly tricky so long as Estee Lauder refuses to sign the compact for safe cosmetics and continues to use toxics in their products. Hypocrisy? You betcha.

Seems all the big players use Pinktober to cover up one thing or another about breast cancer.

A Word About Mammograms

Since Komen thinks everyone should get a mammogram, and that’s all they talk about in October, a couple of things of note on this topic.

Insert breast, squeeze, zap with radiation

Just as the month was drawing to a close, a new study was issued that shows that mammograms result in a great deal of overtreatment, and actually only help at most 13% of women whose breast cancer is found by mammogram (that’s about 18,000 women per year of the 138,000 diagnosed by mammograms. I could go into a long explanation about why this is true, but Breast Cancer Action has already done a pretty good job of explaining it. Take a look at the organization’s policy on Screening and Early Detection, particularly the section starting on page 3 about the biological complexity of breast cancer and its impact on early detection. Maybe if the folks at Komen read it they would learn something.

Komen, of course, is not alone in encouraging mammograms even when they are not called for. There’s an organization called Rethink Breast Cancer that is using soft porn to encourage women to get screened. They’ve even made this message into a smart phone app.

Is it any wonder that I want October to end, and soon?

© Barbara A. Brenner 2011

Posted in Breast Cancer, Environmental Health, Health Policy | Tagged , , , , , , , , , | 11 Comments

Mi’She’Berach: Thoughts on Illness and Blessing

Posted on October 10, 2011 by bbzinger

This is a long essay prompted by my thoughts about the Jewish New Year, the Jewish Day of Atonement, and the prayer that Jews say for healing. Grab a cup of your favorite hot beverage, and settle in. As always, feel free to share. And L’Shana Tova (Happy New Year).

At 2011 Yom Kippur services (Jewish services for the Day of Atonement), with the help of my partner Susie Lampert, I delivered the following teaching using a text-to-speech program that allows me to express my thoughts in spoken words even though my ability to speak is quite compromised. The program is called Neo-Kate. It’s free app for the iPad.

Last year at this time, I was on the verge on turning 59. Yesterday, I turned 60. God willing, next year I will turn 61. But the medical unknown I faced last year, that I told you about then on the afternoon of Rosh Hashanah, has turned into a dreaded disease: ALS. There is no cure. There aren’t even any good treatments. So, barring the end of the world as I know it, or a medical miracle, I know how I will die and that my life will be shorter and my living far more compromised than I would have ever thought or wished it to be.

As my ALS progresses, I want to be able to make conscious choices about what I am willing to tolerate in terms of interventions and daily life. To do that, I need to keep focusing on what I value in life — love, music, words, time with people I care about, activities of the mind, pursuit of spiritual connection — and how much of what I value can be achieved or obtained when there is so much my body will not be able to do.

 

And I want keep my eyes wide open to what the future holds, realizing that I am essentially an optimist in how I approach life. I think we respond to devastating health news from our essential beings. A fatal illness does not change who we are. For me this means that, even as my physical capabilities wane, I will look for and try to embrace the positive aspects in what remains available to me.

Illness confronts us with some of the greatest uncertainties we ever face. In my case — and really for all of us — the uncertainty is not about what the future holds, but how it will unfold. How do we embrace illness, if that is our reality, without welcoming it? How do we continue to do what matters to us as long as we can? How do we find comfort in the support of friends and the love of God? What role does God play in a devastating illness and in healing?

These issues are particularly poignant during the Days of Awe, and especially at Yom Kippur. As my Rabbi, Margaret Holub, reminded me, one important part of the Yom

Rabbi Margaret and her hero Maimonides

Kippur ritual is rehearsing our own deaths as we fast, repent, dress in the white of a shroud and engage in the recitation of the culminating Shema (the central prayer of the Jewish faith) in the divine presence that closes the Day of Atonement.

 

But the prayer we say for healing — the Mi’ She’Berach — is said whenever the Torah (the first five books of the Old Testament) is read, and at many other times as well. Healing is by no means limited to Yom Kippur. And there are quite a few translations of the prayer, which originated, interestingly enough, as a prayer for rain in a time of draught.

Debbie Friedman

I’m partial to Debbie Friedman’s translation, which can be stated briefly as:

May the source of strength who blessed the ones  before    us

Help us find the courage

To make our lives a blessing

And let us say, Amen

Bless those in need of healing with r’fuah sh’leimah

The renewal of body, the renewal of spirit

And let us say, Amen

The new facts of my life also brought back to me the soliloquy from Hamlet that was

Dan Donohue, my favorite current Hamlet

central to the teaching on uncertainty that I did here last year on Rosh Hashanah. Most people know the part of this speech that starts “to be, or not to be,” but there are other words that speak to me:

 

But that the dread of something after death,

The undiscovered country, from whose bourn

No traveler returns, puzzles the will,

And makes us rather bear those ills we have

Than fly to others that we know not of?

Thus conscience does make cowards of us all,

And thus the native hue of resolution

Is sicklied o’er with the pale cast of thought,

And enterprises of great pitch and moment

With this regard their currents turn awry,

And lose the name of action.

The Friedman translation of the Mi She’Berach prayer is really not so far removed from Hamlet. I think asking for the courage to make our lives a blessing has a lot in common with avoiding the fear that puzzles the will and makes us lose the name of action.

That Hamlet quote also has things in common, I think, with comments Rabbi Margaret made at the start of Rosh Hashanah (the Jewish New Year) this year about what it would be like to live conscious of all the terror and awe that are part of the world that God created. Nothing like an always-fatal disease to remind me that this is actually where I now live all the time. How do we face this reality and keep moving forward?

One aspect of my answer to this question is nicely expressed in one of the meditations at the beginning of our High Holy Day prayer book:

“Awe is an intuition for the creaturely dignity of all things and their preciousness to          God; a realization that things not only are what they are but also stand, however           remotely, for something absolute. Awe is a sense for the transcendent, for the                         reference everywhere to God, who is beyond all things. Awe enables us to                  perceive in the world intimations of the divine, to sense in small things the                           beginning of infinite significance, to sense the ultimate in the common and the                 simple; to feel in the rush of the passing the stillness of the eternal.”

One way for me to keep the terror in perspective is to focus on the places where God’s awe is manifest. As I’m less able to get around, I notice a lot of things through the front window of our house: hummingbirds, the clouds in the sky, the quality of the light. In the right frame of mind, I draw from these things the sense of the transcendent, of the reference everywhere to God. They enable me to sense in small things the beginning of infinite significance.

Within this framework of awe and terror, I keep moving forward — which is another way of not losing the name of action, of trying to make my life a blessing — I am determined to do what I can, while I can, and to adapt to do things differently as I lose function. I’m an activist by nature or nurture or experience. As I lose mobility, I have acquired a cane and walker to help me

A Walker Like Mine -- Red!

get around on foot. I use eating utensils with fat handles, which are easier for me to grip than regular utensils. Since I can’t talk very well, I write a blog that keeps me engaged in the world and interacting with people who care about the things I care and write about, and I speak with the help of technology. I spend time with my beloved partner Susie. I travel as I can to places I need or want to be.

And, over the course of the past year, as I have worked to face my reality with my eyes open and without losing the name of action, I have found myself looking in many places for how to do that. One such place is my Jewish heritage. With Rabbi Margaret’s help, I have taken up weekly Torah study with a dear friend (in

This is a Torah

English; I can’t read Hebrew). I fulfilled a goal that had long been in my mind of taking a Hebrew name, and I decided to do that before I learned that some Jews change their Hebrew names when they are seriously ill to try to fool the angel of death. As part of the process of taking a Hebrew name, I

This is a Mikvah

immersed in a Mikvah (a Jewish ritual bath) for the first time. I now meet regularly with a rabbi from the Jewish Healing Center in San Francisco.

As I read Torah, I find things that help me maintain perspective on healing and faith. In the part of Genesis called Mikeitz, the following commentary appears in Etz Hayim version of the Torah:  “One of the lessons of the Joseph story . . . is that life is cyclical. Good years are followed by lean years, adversity is followed by success, rejection yields connection, winter gives way to spring and summer, only to return again. “What can be learned from this parashah is to prepare ourselves in the good days, days in which holiness is revealed, to set the light in our hearts, to be there in times when holiness seems far off.” The author of S’fat Emet answers his own question: “We must store up resources of faith, even as the Egyptians stored  grain, to nourish us spiritually when events turn against us.”

From Rabbi Eric Weiss of the Jewish Healing Center I have learned to return, either physically or in my mind, to the places in nature that feed my soul without being nostalgic for how I used to be in those places. Instead, I see the beauty in these places in the way I can now, given my physical limitations.

I also spend time with friends, though this has posed a greater challenge for me in some ways. My energy is not what is was, and I need to be careful not to overdo either physically or emotionally. But there is the mitzvah (good deed) of visiting the sick, called bikkur holim. I have struggled with this directive, as the object of the mitzvah. Finally, I concluded that the directive about the mitzvah is directed at the visitor, not the person who is ill. While it is a mitzvah to visit the sick, that does not require the person who is ill to see everyone who is trying to fulfill it. I have it on good authority from the Shulcan Aruch that the rule is that, if you go to visit a sick person who is not up to seeing you, you should stay in the hall and sweep the floor. My friends have been mostly understanding, and are kind of enough to metaphorically sweep the hall floor from time to time.

A tool for sweeping floors

I have also learned that support of my community — people I know and even people I don’t — is enormously important to my spiritual healing. When people tell me they have said the Mi’ She’Berach for me, it touches me and helps me. According to the Etz Hayim Torah commentary, we say this prayer for two reasons: to ask for God’s help in healing those who are ill, and to notify the community who is ill and in need of the support of the community.

When we said this prayer last week at Rosh Hashanah services in Mendocino, California, the number of names recited as in need of healing was startling to me. The number of calls on the community – and most communities, I imagine — for acts of support and loving kindness, which I experience whenever I am with the Jewish community in Mendocino, may seem daunting. But as one commentator put it, the prayer seems to act less as a wish for literal fulfillment of a petition and more as means to set one’s heart in the right direction. Invoking God’s blessing can be a boon, regardless of what God does or does not do — because it enables the person who is ill to be joined in her suffering by divine presence.

When Rabbi Weiss blesses me at the end of our monthly sessions, I feel that presence. When this congregation says the Mi’ She’Berach, I feel it, too.

In the Debbie Friedman version of the Mi’ She’ Berach, the verses end with the phrase “and let us say amen.” I believe that when we call together for healing and spiritual connection, it helps those of us who are ill. All of us are deeply grateful.

And let us say “amen.”

© Barbara A. Brenner 2011

Posted in ALS, Illness | Tagged , , , , , , , , , | 30 Comments