What Ever Happened to Previews of Coming Attractions in Health?

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Anybody who knows about ALS knows where those of us with the disease end up. But there are steps along the way that can be anticipated, and, if anticipated, dealt with to minimize discomfort. As I thought about my own situation recently, I realized that there are lots of ways the medical profession could help people if they would just communicate about what’s coming.

And I don’t mean doctors saying what they think will happen up, as doctors sometimes do. We all know, don’t we, that doctors are

Not a doctor

just people with particular training that doesn’t include training in clairvoyance?

But there are things medical people actually know that it would be helpful if they communicated. Here are are a few examples of how that might work. All are taken from my own experience or the experience of friends.

What Happens to Your Feet When You Can’t Walk So Much?

A couple of weeks ago, my feet started swelling up. When the swelling didn’t go away, I emailed the terrific nurse at the Forbes Norris Clinic, where I’m seen for ALS, and asked what might explain it. The answer was: dependent edema, when fluid builds up in appendages that are mostly idle. It’s like being on  a 25-hour airplane ride. So, as ALS

The fun way to get edema

progresses in the legs, making it harder to walk, ALS patients like me walk less, and their feet swell.

While I was distressed by the symptom, I was more unhappy that no one had told me that it might occur, or what could be done either to prevent it or make it go away. Turns out that a pretty straight forward lymphatic massage that my yoga instructor/Thai masseuse suggested is really quite helpful for reducing the swelling. And the clinic nurse knew about feet and ankle exercises to reduce the risk of swelling.

If we know that dependent edema happens, and we know it happens in people who stop walking much, and we know that people with ALS stop walking much, why don’t we tell them that it might happen and give them the tools to minimize it and treat it if it does occur? The medical profession should not make the patients come to them complaining about things that can be anticipated. We have enough on our hands.

When Is It Useful For People With ALS to Record Their Voices?

People with ALS lose the ability to talk because the muscles that control speech stop working. Sometimes this is how ALS first manifests. It’s called bulbar onset.

Fortunately, some speech pathologists devote their lives to helping ALS patients. They know a lot of things. One thing they seem to know is that there are ways to record your

There's better technology now for voice recording

voice while you still have it so that the sounds can be used in text-to-speech programs that exist.

Of course, this is only possible while a patient can still talk reasonably well. By the time I was told about this option, I wasn’t one of them. Information that might have been very helpful if given in a timely manner.

How Long Does It Take to Recover From Abdominal Surgery?

Abdominal surgery isn’t rare; a lot of it is done every year. As a result, there’s a lot of experience that can tell us how long, on average, patients take to recover from the surgery to the point where they feel like their normal selves. So why don’t surgeons tell patients how long it will be?

A friend of mine recently had emergency abdominal surgery for an intestinal adhesion. Very scary. After the surgery, her surgeon told her that she could go back to work in a few weeks, and said not one word about how long her recovery time would be. The medical excuse her to explain her absence from work was only good for those few weeks.

If a doctor tells you that you can go back to work two weeks after surgery, isn’t it rational to expect that time frame to bear some relationship to recovery time from the surgery? In fact, it was nearly 6 weeks before my friend began to feel recovered. Is it that the doctor didn’t know, or that he just wasn’t telling? Either answer is simply unacceptable.

Does a Double Mastectomy Reduce Your Risk of Breast Cancer to Zero?

We know the answer to this one, and it’s “no.” Because we have much more breast tissue than mastectomies can remove, there remains a small but measurable risk of breast cancer even after the surgery.

I heard recently about a woman who asked her oncologist this question, clearly hoping that the answer was yes. Indeed, that’s the answer the doctor gave. I know this oncologist and I know he knows that his answer was wrong. Whom did he think he was protecting? Why is the truth so hard to tell?

Duty to Warn?

Each of these examples points to a failure in the medical community both to realistically anticipate and communicate with patients about conditions or situations that can be easily

Challenges ahead

anticipated. In the legal system, there’s a duty to warn people who might reasonably come in contact with dangerous products or conditions that those dangers exist. Doesn’t the medical community have the same duty? Shouldn’t it?

 

© Barbara A. Brenner 2012

Posted in ALS, Breast Cancer, Illness, Medical Science | Tagged , , , , , | 5 Comments

Changing the Culture of Health Care in a Consumer Society — Not So Easy

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On April 4, 2012 there was a lot of excitement in the press about the fact that nine different boards of medical specialists are now recommending that doctors do fewer tests on patients. The specialties include family practitioners, cardiologists, radiologists and

A group of doctors. They like making recommendations.

cancer specialists. Though recommendations to do less testing have been made before and intensely resisted — note the U.S. Preventive Services Task Force  recommendation in 2009 to do less mammography screening — for some reason, the fact that medical specialists are making the suggestion now stimulates hope that change will happen. I’m not so sure. Here’s why.

The Culture of Health Care in the U.S.

You may have noticed that, in this country, we seem to approach health care like other commodities: I need or want it and I’m going to get it. There’s a reason we’re referred to as health care “consumers.” (Some years ago, Fran Visco of the National Breast Cancer Coalition labeled women with breast cancer as “breast cancer consumers.” Don’t try to dissect the phrase; you won’t like what you find.) People who

A happy health care consumer

have resources, who are driving the high cost of medical care, see health care as a thing they’re entitled to have, no matter what it costs or whether it has more benefits than risks. And “health care” has come to include all of the tests, drugs, and procedures that might be available to address a medical issue.

This culture has been helped considerably by the internet, where patients can find information on all sorts of medical care

On of many on line medical information sites.

that might or might not work. And the culture has become so ingrained that doctors now fear medical malpractice lawsuits when they decline to order a test or a drug that a patient wants.

Will doctors refuse to prescribe a drug or a test that a patient is demanding just because their specialty group has said, “don’t do it?” I doubt it, because the consequences of not prescribing the thing are much more concrete than what might happen to the doctor if  s/he ignores the specialty group’s recommendation. If you were a doctor, would you fear more the patient’s complaint (and even law suit) or the knowledge that you are going against you medical specialty’s recommendation, possibly justifying your behavior on the grounds of precaution?

The Role of Patient Advocacy Groups

The cultural drivers toward more and more care are supported by many health advocacy groups focused on specific diseases. From the breast cancer organizations that urge frequent mammograms, to the prostate cancer groups that insist that a PSA test will save

Patient advocacy groups have lobbying alliances.

your life, to the lung cancer groups urging screening with spiral CT scans, to the osteoporosis organizations urging annual bone density tests and pills to address risk rather than disease, the push for more interventions is unrelenting.

Often, these groups receive funding from the drug companies or device manufacturers that sell the things (medication, devices, testing equipment, lab facilities) required for the interventions the groups promote. In other settings, this would be a conflict of interest.

Don’t think for a moment that groups whose existence is premised on a belief in a medical test will go quietly away if doctors try to do less of the test. The outcry every time there is a call for less mammography or less PSA testing is a testament to the power of these organizations to mobilize people to protect their turf.

Role of Industry

Another driver of the health care consumer culture in this country is the companies that make drugs and medical devices. You are well aware that they are in the business of making money. One of the ways they do that is by getting consumers to demand things of

Your t.v. doesn't look like this, but the ads do

their doctors. They do this by advertising their products to consumers. Direct-to-consumer advertising of drugs, which has been happening in the way it is now in the U.S. since the 1970’s, has helped drive demand for and consumption of medical care off the charts.

One of the reasons patients demand so much of their doctors is because the drug companies tell them to. You know: the ads that end with, “Ask your doctor.”

Want to Change the Culture? Ask Different Questions

If you want to change the culture of health care, think about asking different questions like:

— Do I need this treatment? Will it help me? What percentage of patients who                  receive this treatment benefit from it? How great is the benefit? What are the                  risks?

— Is the test or treatment my doctor is recommending one I need? What’s the                  purpose of this test or treatment? Does it address a condition I have?

— Is the advocacy group that’s recommending this device funded in part by the                     manufacturer?

— Is my Congressional representative committed to ending direct-to-consumer                drug advertising?

The doctors alone can’t change the culture. We all have to do it.

P.S. Speaking of culture change, don’t miss Pink Ribbons, Inc., the film that is changing the culture of breast cancer, when it comes to a theater near you.

© Barbara A. Brenner 20

Posted in Health Policy | Tagged , , , , , , , , , , | 4 Comments

New ALS Treatment? — Hold Your Applause, Please

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ALS is in the news again. This time there’s a lot of hoopla about a trial involving stem cells.

Before we all get too excited, let’s look at the facts here. And, while you’re at it, you might want to take another gander at a blog post I wrote back in August called Science By Press Release — Not Good News for Patients.

Neuralstem ALS research

Here’s the current story. On March 28, 2012, ALS Facebook pages were all a-flutter about a report that a company called Neuralstem had published interim results from its trial injecting stem cells into ALS patients. The word “breakthrough” appeared in several of these posts.

The link provided for the information was not to the journal Stem Cells, in which the study was published, but a press release on a business website called Market Watch. On that site, the first information you get is the name of the company, how it’s listed on the stock exchange, and the current status of the share price. This is business folks, big business.

Nonetheless, the press release was pretty complete in terms of information about the trial. Let’s take a look.

The Trial in Question

First, this is a Phase I trial. Its purpose — its sole purpose — is to determine whether using stem cells in ALS patients is safe. The trial can’t tell us anything about whether doing so is effective in any way in treating ALS.

As with all Phase I trials, this trial was tiny: 12 patients were enrolled.

These patients were followed for between 6 and 18 months after the injection of stem cells.

Trail Results

These are reported as interim results, meaning that the patients will be followed longer to see whether concerns about safety emerge. Safety issues with new approaches to treatments are rarely completely evident in the first trial, and certainly not when the trial has not been completed.

But, so far, none of the patients have shown long-term complications from the treatment. And none of the patients showed evidence of disease progression as a result of the treatment.

All of which is to say that nobody got hurt. At least so far, injecting stem cells into the spines of ALS patients appears to be safe.

So why all the excitement? It seems that one of the 12 patients showed improvement in clinical status after receiving stem cells. Though the press release is clear that the trial was not designed to show clinical improvement, this single case seems to have a lot of people excited. The improvement could be totally unrelated to the stem cells, but no one seems to be considering that possibility.

The other reason for the excitement may be that, based on these results, the FDA has approved an expansion of the trial to 18 patients (a 50% increase in the number of patients, but still a tiny number) and to test the insertion of stem cells in the cervical spine. As far as I can tell, this is still a Phase I safety trial.

Call Me When It Works

Before a drug is judged effective and can be approved for prescription, it must not successfully complete a Phase I safety trial, but also a Phase II treatment protocol trial and a Phase III benefit v. risk trial. While Phase I success is encouraging, it doesn’t predict the outcome at Phase II and III. Many drugs and procedures never get passed Phase I.

I know that ALS patients need hope. But the excitement about the Neuralstem trial is evidence of grasping at straws. Let’s get some efficacy data — do the stem cells improve patient outcomes? If the answer to that is yes, I’ll be as excited as anyone, and applauding loudly.

© Barbara A. Brenner 2012

Posted in ALS, ALS Treatment, Health Policy | Tagged , , | 4 Comments

Thoughts on Leadership – Listen Up, Nancy Brinker

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My topic this week is not directly related to health. But it concerns a subject very important to all of us who care about health: what to expect from the leaders of our health organizations.

Several things inspire me to write on this topic: my reputation as a leader in the health field, a message I received from someone who taught leadership development, requests I’ve received lately to get involved with various ALS organizations, and recent developments at the Susan G. Komen for the Cure Foundation.

The Privilege of Leading

Not all of us can lead. Not all of us want to lead. But those of us who have the capacity and the desire must also recognize that leading is privilege, not a right.

Marin Alsop, Symphony Conductor: A Leader

We are given this privilege when people are willing to follow us, and willing to entrust institutions or organizations they care about to our control.

When people lose faith in leaders, or begin to question their integrity or approach, the privilege of leadership disappears. The privilege of leading means being accountable.

Knowing When to Leave

When I was a teenager there was a popular song that had the lyrics: you got to know when to hold ’em, know when to fold ’em, know when to walk away, know when to run. The song

Now when to hold 'em; know when to fold 'em

is ostensibly about a card game, but also about life, and it came to mind as I was thinking about leadership. I think there are lessons here.

As applied to the concept of leadership, the song indicates the importance of knowing when it’s time to step aside and let others lead. I thought long and hard about when it would be wise for me to step down from the leadership at Breast Cancer Action. I decided that I shouldn’t stay at the organization’s helm past the age of 60 because BCA’s style of activism requires young people, and younger people should lead.

Of course, ALS trumped my retirement plans, but I had announced my intention to retire before that happened.

My thoughts about stepping down from leadership at BCA were driven by my concerns for the organization’s future. Leaders think about who they lead — it’s to those people that they are responsible.

Maintaining Principles

Leaving a leadership position doesn’t mean that leaders stop being leaders. Leaders are teachers: they show people ways of moving forward on issues of concern to them.

Because I was well known in breast cancer, there has been interest in my ALS experience that has led to several articles about me: one in USA Today and one recently in the San Francisco Chronicle. Each article prompted people from ALS organizations to contact me about getting involved with them.

I have been very cautious about saying yes. That’s partly because I have a disease that will increasingly limit my function. But it’s also partly because I have principles as a leader in health advocacy that I am not willing to compromise. I evaluate every opportunity through that lens. And, so far, I choose to be independent of any ALS organization; instead I say what I need to in my blog or in Facebook groups of ALS patients.

Having made these points, I turn to Nancy Brinker’s leadership at Komen.

Message to Nancy Brinker at Komen: Time for You to Go

There have been a number stories in the press over the last week or so about high-level staff members leaving the Komen Foundation in the wake of the Planned Parenthood

Picketers at Komen after the Planned Parenthood mess

fiasco. (See my blog about the controversy and a USA Today article about recent departures from the organization.).The first to go was Karen Handel, but it was clear then (as I pointed out in an earlier blog) that she was taking the fall for others who had at least as much responsibility. The recent departures reflect to some degree the depth of the problem at Komen.

At the Dallas headquarters, the Executive Vice President and Chief Marketing Officer, Katherine McGhee, the Vice President of Global Networks, Nancy Macgregor, and the Director of Affiliate Planning and Strategy, Joanna Newcomb have all departed or announced their intentions to do so.

In New York, the head of the Komen Affiliate announced her resignation. That affiliate also cancelled two major fundraising events because of the concern about the fundraising climate for the organization in this environment.

Most of these staffers have been with Komen for a long time.

In many places, donations or Race for the Cure participation is down. Way down. The Komen organization is in big trouble.

The message is clear, or should be, to Nancy Brinker, who has been the moving force behind Komen since its inception: people are no longer willing to follow you. Your leadership is at an end.

But Ms. Brinker doesn’t seem to be responsible to anyone at the organization. The small board of directors is hand-picked by her. The most recent move there is that the current chair is stepping down from the leadership of the board, and being replaced by someone close to Brinker. As a friend pointed out to me recently, leaders who are unaccountable to anyone are called dictators. For a hand-picked board to express its “complete confidence in Nancy Brinker” says more about the board and its lack of understanding of the harm done to Komen than it does about Brinker’s current leadership.

Nancy Brinker: time to go.

When a leader puts personal interests ahead of organizational ones, she not only loses her leadership role, but jeopardizes the organization as well. To have an organization as large and as influential as Komen and not be able to think about the organization first is, in my view a failure of leadership.

For the good of Komen, and for all of those who care about ending the breast cancer epidemic, Nancy Brinker should resign, and so should the Komen board of directors.

I’m sure Nancy Brinker can find other ways to contribute to breast cancer cause. If I can with ALS, surely she can with a disease to which she has devoted so much of her time and energy.

If you think Nancy Brinker should resign, tell her so. Her email address is NBrinker@komen.org.

© Barbara A. Brenner 2012

Posted in ALS, Breast Cancer | Tagged , , , , , | 5 Comments

Choices: How I Live with ALS

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At every turn in our lives, we’re faced with choices. When I was diagnosed with ALS in November, 2010, little did I know about the choices I would be facing. But here I am, making them. Part of my ability to make choices is about resources: money, care providers, and my medical team come to mind. But I think more of my choices are about  my attitude.

I think there are essentially two ways of facing any life-threatening or fatal illness: surrendering to it, or trying to manage it. Since surrendering is not my usual m.o., I’m not surprised that I’m trying to manage it to the extent I can. Controlling it is out of the question until research develops treatments that work.

Here are four examples of my approach to ALS. They involve the use of technology to talk, a feeding tube, a neck brace, and wheel chair.

Technology Talks

My ALS is characterized by what is called bulbar onset. That means it first affected the muscles of my mouth and throat. My first symptom was slurred speech. Then it became hard for me to project my voice. With the help of Amy Roman, a fabulous speech therapist at the Forbes Norris Clinic where I’m seen for ALS, I learned about a microphone and amplifier to project my voice. (For information on this technology see an earlier blog posts entitled There Goes That Person With . . . and Helping Each Other – It’s Not So Hard. Maybe I looked funny walking down the street with a mike in front of my mouth, but at least I could be heard.

As my speech continued to deteriorate, and again with advice from Amy Roman, I learned about free text-to-speech programs that speak for me. I type; the software speaks what I type. (For more on this technology, see an earlier blog post entitled Having A Voice, Communicating and Somewhere In Between.)

Is it perfect? Not by a long shot. But, for me, it is way better than being silenced or struggling to make what is left of my ability to speak understood. A choice.

A Feeding Tube Sooner Rather Than Later

The weakness in the bulbar muscles means that I developed trouble swallowing liquids and food.   While not everyone with ALS will develop problems swallowing, many will. There are two big problems that accompany problems with swallowing: the risk of choking, and the risk of aspirating small bits of food or liquid into your lungs and developing pneumonia. Neither is a pretty picture.

This a PEG Tube. The right hand end is in my stomach. The left hand end is where the food goes in.

As my swallowing got worse, it took me longer and longer to eat a meal, and choking was a common occurrence. Rather than wait until I ended up in the hospital with pneumonia, I decided I should get a feeding tube.

It’s called a PEG (percutaneous endoscopic gastrostomy) tube. It’s a tube in my stomach that comes out through a hole just above my belly button. At the end of the tube is port through which liquid nutrition (and medication, and alcohol or coffee or tea) enters the tube and then my stomach. The nutrition I get is a liquid that comes in a can. (And it’s a prescription, so my food is paid for by MediCare.) To maintain my weight, I consume 5.5 cans of this stuff a day. And I also take in water through the tube to stay hydrated.

It’s not as much fun a eating was by a long shot, but eating had ceased to be fun for me by the time I decided to get the tube. But I can nourish myself (at least for now), and can do it discretely even in restaurants when we’re out with friends. Have tube, will travel.

I could have waited until something dire happened that forced me to get a tube. But, for me, getting the tube before that was a much better approach. It leaves me — for now at least — in control of my food intake, and without the risk of something awful happening.

Holding My Head Up

Seems that some of my muscles that are not getting the nerve messages they need to work right are the muscles that allow me to lift my head after I bend over. I had two choices here: go around with my eyes focused on the ground a lot, or get a neck brace to help me hold my head up.

There is a terrific physical therapist at the Forbes Norris Clinic, Michelle Mendoza. I’m at the clinic every 3 months. The last time I was there, in February I asked to talk to Michelle. I explained my issue, and Michelle had several approaches for dealing with it. She discussed them with me, and showed me the devices and let me try them on.

Since that day, I wear a neck brace most of the time during the day. It helps keep my head

My neck brace looks like this. I don't.

from falling to low on my chest, so my muscles don’t have to work so hard to lift my head.

Is it fun? No. Does it help? Yes. I imagine that some people don’t want to consider solutions like these because they don’t like the way it looks. But I would rather look a little out of the ordinary and be able to function as well as I can as long as I can. Choice made.

Wheelchair Assistance

As I type this blog, I’m sitting in a wheelchair at my desk. I don’t use the wheelchair all the time, because I don’t need to. So why do I have it?

The Permobil 300. Lots of bells and whistles.

Walking has become more difficult for me over time. I can still walk, usually with the assistance of a walker with wheels, but it’s tiring because it requires so much effort to do it. So, when I get tired, I take to my wheelchair. It minimizes fatigue. It’s that simple.

I also wanted to learn how to use a motorized chair before I had to be in it all the time – that is, before I’m no longer able to walk. The chair has lots of bells and whistles: the seat elevates and tilts, the back reclines, the foot rests extend. I have to learn how to back into our elevator without hitting the walls, and how to navigate corners. There’s a lot  to learn

I know some people don’t want to be in wheelchairs if they don’t have to be. I guess the question is what is meant by “have to be.” I have to be if I want to conserve my energy and be as high functioning as I can be for as long as I can be. I didn’t need to wait until I took a serious fall to think about a wheelchair.

Managing v. Surrendering

Barring a medical miracle or a tornado hitting our house, ALS will get me one day. But, until that day comes, I will work to manage what I can. Using aids like the ones I describe here enables me to continue to function at the level my energy permits. I have a lot to live for, and a lot to do. Surrender is not an option for me.

 

P.S. — The film Pink Ribbons, Inc. will be in theaters in the U.S. starting the end of June. Look for a theater near you on this list, and keep checking it because it is being constantly updated:  http://firstrunfeatures.com/pinkribbons_playdates.html

© Barbara A. Brenner 2012

Posted in ALS, Disability, Illness | Tagged , , , , , , | 16 Comments

Don’t Be Surprised By the Undelivered Promise of Personalized Medicine

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In the past week there have been no fewer than 3 stories about genetic research and the promise of personalized medicine. One was a cautionary tale. The other two suggested to me that even reporters — or their editors — just want to believe the hype without considering the reality.

Let’s Just Pay for Drugs That Work — Now There’s an Idea

The March 7 New York Times carried an op-ed written by Samuel Waksal, the founder and chief executive of a biotech company, entitled Pay Only for Drugs That Help You. The piece argues, not surprisingly, that people and insurance

Samuel Waksal. Is he about to put a foot in his mouth?

companies should be willing to pay a lot for drugs that work. (This is the “social value of medicine” idea about which I have ranted in a previous blog ) Waksal makes the excellent point that, to give drugs to people for whom they will work and not to people for whom they won’t, we need to be able to distinguish the two groups. He goes on to argue that people and insurance companies should pay if the drug works, but not if it doesn’t. And he says that genetic tests should be used to predict whether a drug will work for a particular person, and that this approach will give incentives to drug companies to innovate instead of making more “me too” drugs.

“Me too” drugs are an enormous problem. They provide a most a miniscule additional benefit for patients, and are developed at enormous expense. The drug companies make out like bandits. Patients get, as we say in Yiddish, bupkis.

There are, however, several problems with Mr. Waksal’s theories. As he notes, genetic markers are not always an accurate predictor of whether a drug will work or not (more on this below). Waksal tries to mitigate this problem by suggesting that the FDA could set up criteria for whether a drug is working or not in a particular patient. Among those criteria, he argues, could be anything from tumor shrinkage to overall survival. (On the irrelevance of tumor shrinkage to patients lives, see my blog.)

And Waksal’s argument that drug companies would agree to this approach when they make so much money now selling drugs to whole groups of people for whom they don’t work is some kind of fantasy. Shareholders do best when a company sells a lot of its products, whether people need them or not. This is capitalism, Mr. Waksal.

The Gene Sequencing Juggernaut

Moving beyond the op-ed page to the business page, on March 8 the New York Times printed a news article entitled Cost of Gene Sequencing Falls, Raising Hope for Medical Advances. The story is about the use of the power of computers to reduce the cost of

A gene sequence. Pretty no?

sequencing the human genome. The article’s introductory paragraphs contains the following sentence: “The promise is that low-cost gene sequencing will lead to a new era of personalized medicine, yielding new approaches for treating cancers and other serious diseases.”

This story, like the Waksal op-ed, is based on a premise about the coming holy grail of medicine: treatments targeted to person so they get only treatments that work for them. This is the promise of personalized medicine. Though it has been largely a pipe-dream, you wouldn’t know that from reading these articles. So keep reading.

Personalized Medicine Hits a Bump — Or is It a Land Mine?

In a story not covered by the “everything that’s fit to print” New York Times, the New England Journal of Medicine published a study on March 7 that belies the promise of personalized medicine based on genetic profiles. It turns out that a single tumor can have

A Gene profile. Also sort of pretty. Often less useful than they appear.

multiple genetic profiles — some that indicate a good prognosis, and some that don’t. It also turns out that, when a cancer has spread beyond its original site (the breast for example) to other parts of the body, the genetic profiles of the cancer at the distant sites may be very different from the genetic profile(s) of the original tumor.

The Wall Street Journal article about this study called this a “bump” for personalized medicine. I would suggest it’s more than that. Every time we think we are coming to understand how cancer behaves, cancer tells us otherwise. As the New England Journal study tells us, genetic arrays will never get us to that understanding, because the genetics of cancer don’t follow a straight line. The folly was in ever thinking that they did.

How About Another Approach?

Rather than putting are all our eggs in the largely empty basket of the promise of personalized medicine brought to us by understanding genes, let’s put substantial resources into understanding what in the environment makes our genes go haywire in the first place. However difficult it may be to do this, an investment in this kind of research could hardly deliver less return than research promising the ever-elusive “cure” for cancer.

© Barbara A. Brenner 2012

Posted in Breast Cancer, Health Policy, Medical Science | Tagged , , , , , , , , , , , , | Leave a comment

Context is Everything — Framing the Film Pink Ribbons, Inc.

On Friday, February 24 there was screening of the documentary Pink Ribbons, Inc. at Smith College. As the recipient of the Smith College Medal for my work as a breast cancer activist, I gave a talk introducing the film. That speech is presented here as I gave it. Imagine a hall with 150 or so souls on a cold, wet Friday night in Northampton, Massachusetts . . .

Hello, and thank you for being here this evening.

I want to start with a question: will you please raise your hand if you know someone who has or has had breast cancer?

As you will see in the film, if you raised your hand, you are certainly not alone. Almost

Good news: patients in pink make a ribbon

everyone knows someone with breast cancer. But the other thing you will see in this film is that breast cancer has somehow become good news. Something to celebrate, sing about, dance about, and certainly walk for.

When I had breast cancer at the age of 42, I didn’t feel like celebrating. What’s to celebrate about a life-threatening disease whose treatments amount to — as Susan Love puts it — slash, burn and poison?

Breast cancer hasn’t changed, and its treatments haven’t changed that much since I was 42, 18 years ago. And they hadn’t changed much for many years prior to my diagnosis either. There’s been some progress on the treatment side, but certainly not enough to jump up and down about. And there’s been little if any movement toward true prevention — keeping people from getting breast cancer in the first place — by identifying and eradicating its causes.

What does the general public know about breast cancer? I would argue not much. They know, or think they do, that getting mammograms is the key to beating breast cancer. Some people think mammograms prevent breast cancer, but that can’t be true because, when they work, they find cancer that is already there. Mammograms are a detection device, and a far from perfect one. Detection and prevention are different. Very different.

The public also knows, or thinks it does, that early detection is the key to survival. But early detection works only for the women whose cancer is both life-threatening when found and treatable with currently available therapies. It isn’t necessary for women whose cancer, when found, is not life threatening, and it doesn’t work for women whose cancer, though very small, is so aggressive that it cannot be effectively treated.

And, of course, the public knows that the pink ribbon is the symbol of breast cancer. You’ll learn from the film how that came to be, so I won’t ruin that story.

People say to me that the pink ribbon — on lapels, on products as varied as toilet paper and hand guns — helps raise awareness of breast cancer. My argument is that, thanks in part

Wipe for the cure

to the pink ribbon, everyone is now aware of breast cancer,

Maybe these folks aren't aware of breast cancer yet

unless they are living under a rock. Isn’t it time to move beyond awareness to activism to change the course of the epidemic?

If you think doing a walk for breast cancer, or a run, or a mountain climb is the way to end the breast cancer epidemic, the film you are about to see will, I hope, convince you otherwise.

And if buying a product with a pink ribbon on it would help end the epidemic, it should be over by now, given all the breast cancer shopping that people do. After all, if shopping could cure breast cancer, it would be cured by now.

There is also that “click-on-this-link” kind of activity for funding things like mammograms for poor women. Sounds like a simple and good idea. It is simple, but, like many simple things, it’s not so good. It turns out that in 2007, for example, it took 5 million clicks to fund a total of 129 mammograms. There has to be a better way to provide health care.

As Susan Love says in the film you are about to see, if this is the way we approach breast cancer, we’re missing something big. The kind of activism we need is concerned with the larger context, the notion that we should evaluate the messages we get about breast cancer and breast cancer awareness in light of the issue of how we approach research and provide health care. It means challenging the corporations and organizations that stand in the way of better lives for women.

One way to do raise those challenges is to Think Before You Pink. This is a campaign that was started in 2002 by Breast Cancer Action, the kick-ass organization I had the privilege of leading for 15 years. It focuses on cause marketing: the practice of companies putting a pink ribbon on products to try to increase sales of their products. It provides 5 questions to guide you as you think about these promotions:

1.         How much money from your purchase actually goes toward breast cancer? Is the amount clearly stated on the package?

2.         What is the maximum amount that will be donated?

3.         How are the funds being raised?

4.         To what breast cancer organization does the money go, and what types of programs does it support?

5.         What is the company doing to assure that its products are not actually contributing to the breast cancer epidemic?

Let me give you a cause marketing example that’s mentioned in the film. It’s about KFC, Kentucky Fried Chicken. A couple of years ago, KFC partnered with the Susan G. Komen

I couldn't make this up

for the Cure Foundation. For every pink bucket of fried chicken that KFC sold, they promised to give 50 cents to Komen. Here’s the hitch. In case you didn’t know, KFC food is really not good for you. And it’s sold mostly in economically poor neighborhoods where better food options are hard to find. A lot of nutritionists pointed out this problem and threw up their hands about what could be done about it.

Breast Cancer Action knew what to do about it. We started a campaign to get people to contact KFC and Komen and tell them what they thought of the campaign. We called it “What the Cluck?” Thousands of people took action. While Komen raised a lot of money from the KFC campaign, they didn’t come very close to their $8 million goal, and they took a lot of flak from former supporters about the partnership. KFC was not willing to take that kind of heat two years in a row. They are no longer a Komen partner.

There are other examples in the film. I’ll let the movie tell those stories, but keep an ear tuned for the rBGH and General Mills tale in the film. It speaks to the power of ordinary

From BCA's General Mills Campaign

people to create meaningful change.

Not covered in the film is the controversy that was in the news for many days a few weeks ago, involving Komen and Planned Parenthood. In case you missed the brouhaha, it involved a decision by Komen to stop funding Planned Parenthood to do breast care services like breast exams and referrals for mammograms. Komen claimed there weren’t politics involved. Instead, they said they had a new policy not to fund any organization that was under investigation. It so happened that Planned Parenthood was the only organization that Komen was funding that fell under this new guideline.

Turns out that Planned Parenthood is under investigation by an anti-abortion Republican Congressman who was encouraged to go after the organization by a pro-life group that is furious that Planned Parenthood does abortions.

When the news of the Komen decision became public, a firestorm of public opinion erupted. People complained that women’s health was being politicized, that Komen was undercutting poor women who get health care at Planned Parenthood, and that Komen had taken sides in the abortion debate, which has nothing to do with its mission.

Komen responded to the public outcry by claiming its move was not political and then reversing its decision, agreeing to continue funding Planned Parenthood this year.

End of story? Not so fast. The move by Komen and the public outcry in response to it revealed some other things about the breast cancer organization that are now under scrutiny. Like the fact that Nancy Brinker, the founder of Komen, told one story and then another explaining the Planned Parenthood decisions, neither of which made sense. Like the connections of the leadership of Komen to Republican political candidates and causes. Like the proportion of money that Komen gives to breast cancer research has been declining (to 15% of its budget) as their revenues have increased. Like the support given to

I couldn't make this up either

Komen by selling pink handguns. Like Komen’s denial of the toxicity of BPA, even though studies have shown that BPA interferes with the effectiveness of some breast cancer treatments. The list is growing.

What surprised me was that people were shocked that women’s health was being politicized by the Komen decision. Women’s health has always been political, because it’s about women struggling to get what they need for their health from a system designed by men for the needs of men.

Breast cancer is no exception. Breast cancer has been political since people noticed years ago that the disease — which primarily affects women — got far less research funding than cancers that primarily affect men. That isn’t the case any longer, but it’s where the politics of breast cancer started.

Since then, and in many ways because of that effort to increase funding for breast cancer research, a breast cancer movement has come into existence. Like all movements, the

This is a solar spectrum. Much prettier than the b/c political one

breast cancer movement covers a spectrum — from left to right or right to left, depending on where you want to start.

One way to think about the different ends of the spectrum is to consider the kinds of questions that organizations ask at either end.

Toward the right end of the spectrum, groups ask questions like these:

— How can we get more money into breast cancer research?

— Are there drug companies that we can partner with to advance our mission?

— Are there scientists who are willing to tell us what direction breast cancer research should take?

— Are there corporate partners who will fund our work?

— Is there good news on breast cancer for which we can take credit?

Toward the left end of the spectrum, groups ask questions like these:

— With all the money that has been invested in breast cancer research, shouldn’t we have better treatments and know more about the causes of breast cancer?

— Will individuals fund our work if we refuse to take money from companies that profit from cancer?

— What direction do people affected by breast cancer want the research to take?

— What are the strengths and weaknesses of the latest research study, and what does it really mean for patients?

— What companies are making products that may increase the risk of breast cancer and how can we organize people to get them to stop?

Some of this spectrum is evident in the film you are about to see. If you think critically, as Smith has taught us to do, about the breast cancer issue, you’ll never see a pink ribbon the same way again. Enjoy the film.

To find out where the film maybe showing near you soon, visit the website of First Run Features, the U.S distributor. It’s already in theaters in Canada.

© Barbara A. Brenner 2012

 

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

Further Thoughts on Disability Access

If you like this blog, pass it on to your friends. Let’s keep the conversation going.

In September of last year I wrote a blog on disability access, based on my experiences then traveling in an increasingly disabled condition.

Five months later, I’ve done more traveling. And, as my ALS progresses, I have more

Yosemite Park. It really is this beautiful.

physical limitations. My most recent trip long trip was to Yosemite National Park, a place that my partner Susie and I love and have visited many times in our many years together. This time, Susie had reserved an accessible room at the lodge.

Good News on Entering the Park

As we drove up to the entry station, we were unable to locate the free disability access park pass that I had acquired last year when we visited the park. But the Ranger issued another pass immediately, I guess because he saw the wheelchair we had in the back seat in case I needed it.

We were surprised and delighted when the ranger also handed us a guide to disability access in the park. It seems that the National Park Service is paying at least some attention to the needs of people with disabilities who visit.

Our Lodge Room: Some Good News/Some Bad

We drove through the western end of the park to the lodge so Susie could register us at the Lodge, where we were staying.

Turns out that at least some of the accessible rooms at Yosemite Lodge – including the one

Yosemite Lodge at the Falls

to which we were assigned, are on the outer edge of the motel-type units. That’s a long commute to food, to the front desk, or to the shuttle bus that can be used to visit park sites on the Yosemite Valley floor.

When we got to our room, we discovered that there is no way to turn on an interior light when you walk in the door. There are lamps on each side of the bed, but they are across the room. There is also a ceiling light in the center of the room, but its control is a pull chain that is too high to be reached by anyone in a wheelchair.

We also discovered that electrical outlets were in very short supply and not really accessible. There were a total of 4 outlets that we could find: Two were behind the bed, one was behind a huge set of drawers, and one was at the vanity. None was reachable from the one working surface unless you happened to bring an extension cord. All but the one on the vanity required that we get down on our hands and knees to plug anything into them.

Light switches look like this, in case the Yosemite electrician is wondering

Seems like the electrician had the day off when this room was made accessible.

After Susie managed to get the room lit, we immediately checked the bathroom, which is always the first thing we look at when evaluating accessibility in hotel accommodations. This bath is very well designed. The wheel-in shower has a built in seat and a removable shower head placed within reach of

An accessible bathroom

anyone who uses that seat. The towel hooks are set low enough to be reached by someone in a wheelchair.

Lighting in the bathroom was another matter. The switches that control the bathroom light are placed behind the bathroom door. So unless there is enough light on in the bedroom to cast some illumination into the bathroom, you have to feel around in the dark to turn on the bathroom light. We looked for an electrical outlet which would have been useful if we happened to travel with a plug-in night light, but there was not a single one in the bathroom.

It would also have been helpful to have more grab bars in the bathroom, one on every wall.

On the other hand, the closet place for hanging up clothes had the bar for hangers set low enough to be reached from a wheelchair. It also had those “theft prevention” hanger hooks that would be hard for anyone with hand mobility problems to manage.

Accessibility in Public Park Buildings

All of the public spaces at the Lodge have door buttons that automatically open doors. And most of them worked most of the time. None were in evidence at the entry to the Ahwahnee Hotel.

On the other hand, public bathrooms at the Lodge are not easily accessible. There are no buttons to open the bathroom doors (which, in my experience, is common failing with public bathrooms). There is an accessible bathroom in the lodge with a lever handle, but it’s not posted as accessible for some reason.

Round door knob, a no no

Note:on the subject of posting bathrooms as accessible, I have

Lever Door Handle, yes, yes

been noticing lately how the sign does not always mean what it’s supposed to mean. At a bathroom marked accessible for people with disabilities at a restaurant in Albany,California, the door knob was round, a shape not conducive to access.

Accessibility of Park Sites

Yosemite Valley itself is mostly flat, though wilderness. Notwithstanding the demands to

Lower Yosemite Falls. Everyone can get this close.

keep park lands in their natural state, the Park Service has built a wonderful accessible path to one of the central features of the park: Lower Yosemite Falls View.

Mirror Lake, another wonderful site in the park, is usually accessible only on foot or, if snow is present, by skis or

Mirror Lake Yosemite

snowshoes. There is a road that is closed to the public. But with a disability tag for your car, you can drive the road and see the lake.

And, of course, if you look up, you can see the granite walls and features that what give Yosemite its magic feeling.

Encouraging Improvement

Being the kind of people we are, we sent our list of the good and the bad to accessibility officer at Yosemite. That person’s email address is yose_accessibility@nps.gov. We got a quick and encouraging response to that communication. However, I got no response to my request to be kept posted on changes made at the park. I guess I’ll do something about that when I get back from our next trip.

And Now for A Segue

My next trip is to Smith College to accept a Smith Medal for my breast cancer work. During the festivities, the documentary Pink Ribbons, Inc will be shown to the college community. This film, on a topic near and dear to my heart, may be a theater near you soon. Check the website of the U.S. distributor for screening dates in this country. In Canada, the film is already in theaters. Get your tickets early and tell all your friends.

© Barbara A. Brenner 2012

Posted in ALS, Disability, Health Policy | Tagged , , , , , , , | 2 Comments

Komen’s True Colors: Red, not Pink

If you like this blog, pass it on to your friends. Let’s keep the conversation going.

So much has happened with the Komen/Planned Parenthood debacle that it’s hard for me to let go of the topic. It seems the only thing that could get Komen out of the headlines was

Gay marriage is good for Komen. Who knew?

the Prop 8 decision declaring the ban on gay marriage in California unconstitutional. If I didn’t know better, I would think that Komen would endorse gay marriage out of gratitude.

Regular readers of this blog may have noticed by now that my letter to the editor of the New York Times was not published. The Times seems intent on seeing the Planned Parenthood debacle as one-time slip into partisanship by the Komen Foundation. In an article published on February 8 about Karen Handel’s resignation, the Times writes: “Until the controversy [surrounding Planned Parenthood], Komen had been seen as nonpartisan organization . . . ” I guess you see what you want to see.

Rather than quote extensively from some of the fabulous commentaries on the issue, I provide links below to some of what I see as the most revealing or cogent analyses.

As a frame to these links, I think it’s useful to examine in detail Karen Handel’s letter of resignation from Komen. You may remember that Ms. Handel was for a brief time the VP in charge of Public Policy for Komen. She is also someone who had publicly stated, as a candidate for Governor of Georgia, that she thought Planned Parenthood should not receive government funding. Here’s her letter:

February 7, 2012

The Honorable Nancy Brinker

Dear Ambassador Brinker:

Susan G. Komen for the Cure has been the recognized leader for more than 30 years in the fight against breast cancer here in the US—and increasingly around the world.

As you know, I have always kept Komen’s mission and the women we serve as my highest priority—as they have been for the entire organization, the Komen Affiliates, our many supporters and donors, and the entire community of breast cancer survivors. I have carried out my responsibilities faithfully and in line with the Board’s objectives and the direction provided by you and Liz.

We can all agree that this is a challenging and deeply unsettling situation for all involved in the fight against breast cancer. However, Komen’s decision to change its granting

Karen Handel: Who Me Political?

strategy and exit the controversy surrounding Planned Parenthood and its grants was fully vetted by every appropriate level within the organization. At the November Board meeting, the Board received a detailed review of the new model and related criteria. As you will recall, the Board specifically discussed various issues, including the need to protect our mission by ensuring we were not distracted or negatively affected by any other organization’s real or perceived challenges. No objections were made to moving forward.

I am deeply disappointed by the gross mischaracterizations of the strategy, its rationale, and my involvement in it. I openly acknowledge my role in the matter and continue to believe our decision was the best one for Komen’s future and the women we serve. However, the decision to update our granting model was made before I joined Komen, and the controversy related to Planned Parenthood has long been a concern to the organization. Neither the decision nor the changes themselves were based on anyone’s political beliefs or ideology. Rather, both were based on Komen’s mission and how to better serve women, as well as a realization of the need to distance Komen from controversy. I believe that Komen, like any other nonprofit organization, has the right and the responsibility to set criteria and highest standards for how and to whom it grants.

What was a thoughtful and thoroughly reviewed decision—one that would have indeed enabled Komen to deliver even greater community impact—has unfortunately been turned into something about politics. This is entirely untrue. This development should sadden us all greatly.

Just as Komen’s best interests and the fight against breast cancer have always been foremost in every aspect of my work, so too are these my priorities in coming to the decision to resign effective immediately. While I appreciate your raising a possible severance package, I respectfully decline. It is my most sincere hope that Komen is allowed to now refocus its attention and energies on its mission.

Sincerely,

It’s interesting to note that this letter was sent to Nancy Brinker, founder of Komen and Chair of the Board. (As for the “Ambassador” appellation, that is explained one of my recent blogson this topic.) But Ms. Handel was an employee of the organization, which is

I looked for a picture of the Komen board of directors, but Brinker's photo is all I could find

run by the CEO, Liz Thompson. The fact that the letter was sent to Ms. Brinker is one more indication, if one were needed, that Nancy Brinker is the person who makes the key decisions at the Foundation. I do wonder how Liz Thompson must feel about that, but she doesn’t answer my emails.

In the text of Ms. Handel’s letter, I’ve highlighted (in bold italics) phrases that I think are worth a second look. Taken together, they reveal both Ms. Handel’s attempts to characterize herself as the fall guy for Komen’s moves against planned Parenthood, and the fact that the decisions made in those moves pre-dated her arrival at the foundation. While the public outcry for Ms. Handel’s firing that followed the Komen decision to stop funding Planned Parenthood was more than appropriate, it is folly to think that her departure represents a fundamental change at Komen.

Ms. Handel wasted no time in getting on the airwaves to defend Komen and herself. The ink wasn’t dry on her resignation letter before she appeared, of course, on Fox. In the course of a number of interviews, she accused Planned Parenthood of being “a gigantic bully.” That is rich, coming in defense of an organization that sues anyone or any group that uses the phrase “for the cure” or the color pink to raise money for breast cancer. I guess it takes a bully to know a bully.

As promised here are links to articles you may have missed that reveal important things about Komen. Read them, share them. Let’s get the real story out.

Insight: Komen Charity Under Scrutiny for Funding, Science

This article from Reuters talks about the decline in the proportion of the money that collects that it allocates to funding research, now down to 15% of its spending. But the organization touts its research  funding and get’s people to give by doing so.

Susan G. Komen and the Cancer Within by Clifton Fein

This long, thoughtful, and fact-filled piece is a condemnation of Komen’s behavior under Brinker’s leadership. My favorite phrase in it is the description of Brinker as “the Martha Stewart of breast cancer.” It’s also in this article that we learn that more than 50% of the graduating class of the Yale School of Public Health called on the school to rescind Brinker’s

George Bush's alma mater

invitation to be the commencement speaker. The School declined to do so, but maybe they’ll be a demonstration to welcome Ms. Brinker.

Komen’s Biggest Mistake is About Science, Not Politics by Christie Aschwanden

A wonderfully clear explanation of how Komen ignores the science of breast cancer in its public messages. The damage that results to the public’s understanding of breast cancer is incalculable.

Unless something else extraordinary happens that involves Komen, I promise to turn to other topics again very soon.

© Barbara A. Brenner 2012

Posted in Breast Cancer, Health Policy, Medical Science | Tagged , , , , , , | 1 Comment

Komen Politics: It’s Not Just About Abortion

On February 4, 2012, the New York Times printed a very interesting story detailing Komen’s reversal of the Planned Parenthood funding decision: http://nyti.ms/ylctJT Here’s the letter I sent to the Editor in response. I don’t know if the Times will print it, but everyone should read it.

Dear Editor,

As your excellent article points out, Komen’s reversal of position on Planned Parenthood funding does not resolve the issues raised by the brouhaha. Beyond this debate, there is more to the politics of breast cancer.

Your story notes that Komen’s founder, Nancy Brinker, is a devoted Republican. Her politics have driven Komen to oppose the Patients’ Bill of Rights, the Affordable Care Act, and government funding for treatment of poor women with breast cancer who are screened at government expense.

There is more to breast cancer than the abortion debate. Much more. Komen is involved in all of it.

Barbara A. Brenner
San Francisco

barbara@barbarabrenner.net

Posted in Breast Cancer | Tagged , , , | 1 Comment