Helping Each Other — It’s Not So Hard

Posted on April 11, 2011 by bbzinger

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From Ashland, Oregon, April 3, 2011

On the road

I’m in Ashland, Oregon as I write this. We (my life-partner Susie and I) come here two times every year so we can see all the plays that the Oregon Shakespeare Festival (OSF)

Close to California

does in repertory from March through October. Though I can’t walk as far as I did the last time I was here, and my speech is more impaired, I can still enjoy the theater, and I do.

Despite its name, OSF does a lot of plays that were not written by William Shakespeare. Each year, the company produces 12 plays (by high season in summer, there are 5 productions a day, in 3 theaters). No more than 4 of those 12 are by Shakespeare. On this trip, we saw 3 plays – The Imaginary Invalid by Moliere (fabulous!), To Kill a Mockingbird, based on the book by Harper Lee (also fabulous), and a new play called The Language Archive by Julia Cho (very intriguing and well done).

We have routines here. They involve walking around the main drag, having lunch (and sometimes dinner) at a restaurant called Pangea, eating chocolate-covered frozen bananas for dessert from the local Rocky Mountain Chocolate Factory, discussing the plays, and playing table top games. Very relaxing, in an intense theater-going kind of way.

An interesting thing happened on the way to the theater

At the end of our lunch one day at Pangea, as we were about to head off to our afternoon play, I had to wait for a restroom to become available. The woman who came out of the restroom for which I was waiting stopped when she saw me and asked whether the microphone I was wearing was because I was having trouble with my speech. I told her yes, and she explained that she has a friend with Parkinson’s disease who is having trouble with her speech. I showed her the voice amplifier I use, told her the name of the company that makes it and explained that I found it on line for about not very much money.

The woman who asked me about the device was so pleased! Here was something so simple — and so relatively inexpensive — that might actually help her friend.

The breast cancer lesson – re-learned

That exchange of information outside the restroom in Ashland reminded me of a phone conversation I had back in 2004 with a woman named Amy Langer, the founder and CEO of an organization called NABCO – the National Alliance of Breast Cancer Organizations. (NABCO was a national organization, but it wasn’t really an alliance of breast cancer organizations, and the kind of information they provided reflected the enormous amount of funding that NABCO got from the pharmaceutical industry – but that’s a topic for another blog.) Amy had called to tell me that NABCO was closing. One of the reasons was that the kind of support that NABCO offered to breast cancer patients by connecting them to each other was, in Amy’s view, going to be less and less needed, as more information became available in other ways.

I thought Amy was wrong then. People always want to connect with others who have had experience with whatever they are confronting. A website or a book doesn’t do the trick. The number of calls and emails that Breast Cancer Action got when I was there (and still gets, I’m sure) from women wanting to know something they can find out only by connecting with others with breast cancer, as well as the ongoing appeal of support groups for people who are ill, is a testament to how wrong Ms. Langer was in 2004.

And my experience in Ashland with the voice amplifier tells me that the need to connect – and the value of connecting – to exchange useful information is real for all sorts of conditions.

It’s easy to help: stay open to connections and share information

How did I come to know about the voice amplifier? The terrific speech therapist at the Forbes Norris Center, where I’m receiving care for ALS, suggested months ago that I should use one to preserve my voice. That way I would have less strain when I try to speak loud enough to be heard, which is becoming progressively harder to do, and is hardest to do by the end of the day when I’m more tired. I bought a voice amplifier back when she made the recommendation, but didn’t use it much

When I saw the therapist again more recently, she urged me to use the amplifier all the time, so I wouldn’t find myself in situations where I was straining my voice unnecessarily. So I’ve started doing that.

I walk around now with a little black box (that is not a smart phone) on my hip, with a wire that runs from it to the headset I wear. The headset has a microphone that is very noticeable. I’ve been asked by people whether I’m on the phone, on the air, or projecting my voice for fun. I’ve taken to explaining — with humor, of course — that I’m impersonating Lady Gaga. Turns out, the credit actually goes to Madonna, as Peg Stevenson appropriately points out in a recent comment.

I’m sure many people wonder about why I’m wearing this thing, but don’t ask. I see the looks on peoples’ faces. But when people do ask, I’m happy to try to explain, especially if what I’ve learned can be helpful to someone else.

I’m damned if I know why doctors who treat Parkinson’s patients don’t know about voice amplifiers, or, if they do, don’t recommend them to their patients who having trouble speaking. But I’m very glad that I do, and I’m happy to help provide other people with helpful information. I trust they will share with me, too. And when someone figures out how to keep the voice amplifier from its awful — but not frequent — feedback, I would be delighted — as would all the people around me – if they would share that information!

If we stay connected, we all do better.

Practical advice on voice amplifiers

 

The model I bought is made by Aker, and you can find them on line for as little as $55. The microphone that comes with the Aker is not as sturdy, or as good, as one made by

The Aker voice amplifier

Luminaud, called a HI-GAIN HEADBAND MIC that sells for $85. You can check it out at http://www.luminaud.com/

 

 

© Barbara A. Brenner 2011

 

Posted in ALS Treatment, Illness | Tagged , , , , , , , , | 11 Comments

Drug costs: out of control because we don’t control them

Posted on April 5, 2011 by bbzinger

If you’re an adult in this country who needs and uses any prescription drugs, it won’t surprise you to learn that the cost of drugs is going up. And if you are conscious of political realities now facing the US government, you already know that the government has a big budget problem. You may also have heard that one aspect of that budget problem is the uncontrolled and growing cost of Medicare.

Lots of drugs out there

It may surprise you to learn that the US is the only country in the world that does not control drug costs. And, as the cost of drugs goes up, the impact falls on individuals, on insurance companies, and on the Federal budget, given its responsibility for Medicare costs.

One thing driving the cost of drugs higher is the impulse by drug companies to make sure that the public pays what the companies believe the drugs are worth. That worth is based on the companies’ interpretation of the drugs’ perceived value to patients and society. This is called “social value pricing.” For an explanation of this pricing strategy as it relates to cancer drugs, see

http://bcaction.org/2008/04/21/the-ever-rising-costs-of-cancer-drugs/

Medicare eligibility: part of the solution and part of the problem

Medicare is part of the federal budget. Since I’m now Medicare eligible (thanks to Social Security Disability coverage and compassionate access to Medicare for some conditions that include ALS), I’m paying even closer attention. 

(For those of you to whom this all new territory, the general rule is that, once you qualify for Social Security Disability – which you may do at any age, if you’re disabled and have worked long enough – , you have to wait 24 months to be eligible for Medicare. The general rule is suspended for folks who have one of about 80 conditions for which the Social Security Administration recognizes “compassionate allowance.” Most of these conditions are ultimately fatal, but why some conditions, like inflammatory breast cancer, are eligible, but others, like Stage IV metastatic breast cancer, are not  is beyond my comprehension.)

Medicare is essentially single payer health care, which should help keep the costs of things like drugs down. But as along as drug companies can charge whatever they want to charge, because the US doesn’t control drug prices, it will be hard to control the Medicare budget.

If you have insurance, the ALS drug may be covered

The only drug for ALS is called Rilutek (riluzole). When it works, it delays progression of the disease. It is not a cure. It costs about $1,000 a month, or $12,000 a year. Medicare will cover the cost. For people who don’t have Medicare, insurance might cover (if they

The only drug for ALS

have insurance), or there are some patient assistance programs for people with low incomes. (All you need when you’re sick is to spend time figuring out patient assistance programs, right?)

Cancer drugs: one driver of the high Medicare budget

Then there are the cancer drugs, and they make Rilutek look cheap. In breast cancer, the issue has arisen because the new biotech therapies are breathtakingly expensive. Herceptin, for women with Her2 positive breast cancer, costs $50,000 a year. Avastin, the use of which in metastatic breast cancer continues to be unresolved by the FDA, costs $100,000 a year for breast cancer patients, though there is no evidence that it prolongs the lives of those patients. For patients who are eligible for Medicare, Medicare pays these costs.

On Friday, March 30, 2011, Medicare indicated that it plans to cover the cost of Provenge, a prostate cancer drug that costs $93,000 per patient. In clinical trials, the drug extended the lives of patients receiving it by 4 months. The patients in the trial, and those for whom the treatment was approved, are men with hormone refractory, late stage, metastatic prostate cancer. There is no indication that the drug works in earlier stage prostate cancer or in prostate cancer that is responsive to hormonal treatments.

There is also a new Bristol-Myers Squibb drug for melanoma that costs $120,000 per patient: it extends the lives of patients by just over 3.5 months in clinical trials.

Keep in mind that drugs are never as effective in the general population as they are in clinical trials. That’s partly because trial are almost always designed to treat the “most treatable” patients.

Off-label use: driving costs up

Once a drug is approved for any purpose, it can be prescribed by doctors for any other purpose. Medicare will not prohibit this practice of “off-label use”; indeed, it usually covers the cost of off-label prescriptions just as it would for the approved use(s). Do private insurance companies cover off-label use?

The agency expressed the “hope” that off-label Medicare coverage of Provenge would only occur in clinical trials, but, if breast cancer is any guide to what will happen, that hope is a delusion.

Long before the FDA even considered whether to approve Avastin for use in breast cancer, doctors were prescribing it for breast cancer cases. They were doing that so frequently that most of the income generated by the drug for the company that makes it — then Genentech, now Roche — came from off-label prescriptions.

Only in America

As the cost of drugs goes up, and as we live longer (if we’re lucky) and have more needs for   more drugs as we age, Medicare bears – and, through the types of practices described here – becomes responsible for the increasing costs of drug treatment. Unless we come to grips with this reality, the system may well go bankrupt, leaving a lot of people without care.

Do you think it’s ironic that, if you’re lucky, you’ll die before that happens?

Before we all die, maybe we should come together to demand that limits be imposed on what drug companies can charge.

© Barbara A. Brenner 2011

Posted in Breast Cancer, Health Policy, Illness, Medical Science | Tagged , , , , , , , , , , , , , , , | 9 Comments

Isn’t it time to change the message?

Posted on March 28, 2011 by bbzinger

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Those of you reading this blog are already living in the “information age.” Seems to me that as information changes, those shifts should influence how we think about and talk about issues. Seems logical, no?

Unfortunately, this logic doesn’t seem to be guiding either the Susan G. Komen for the Cure Foundation or ALS Association, as far as I can tell. What these two organizations have in common is that they believe they are the only real players in the non-profit world of the diseases they address. In the case of the ALS Association, they are (sadly) correct. But whether they are right on wrong on their self perceptions, shouldn’t these organizations want to help the public understand the illnesses they address? Seems to me like that’s not so important to them..

Those of you who know me know I have long been interested in breast cancer, and am something of a expert on the topic.

I also take a particular interest in ALS, because I now have the disease. I’ve been reading a number of articles recently about head injuries (often in NFL football players) that result in motor-degeneration symptoms similar to ALS, but not the same disease. What’s the new information here? Well, it seems that Lou Gehrig — the mascot of the ALS Association (whose tag line reads: “Fighting Lou Gehrig’s Disease”) — may not have had ALS. Seems he played injured – often with concussions — and was famous for doing so.

When this news began to emerge, the chief scientific advisor for the ALS Association was quoted as saying something along the lines of, “It would be terrible to lose Lou Gehrig as a symbol of ALS, since he helps people understand what kind of disease it is.”

Seems to me that if it turns out that the man on whom you have built your organization didn’t have the disease that is its focus, it’s time to rethink your message, rather than bemoan the loss of your symbol.

The Susan G. Komen for the Cure Foundation (hereafter “Komen”) seems to have similar problem. As we have learned more and more about breast cancer, it’s become clear that “early” detection with mammography only works for some women. For a clear explanation of what “early detection” means – and doesn’t – in breast cancer check out http://bcaction.org/policy-on-breast-cancer-screening-and-early-detection/

When Komen started– it was then called The Susan G. Komen Breast Cancer Foundation—its message was “early detection is your best prevention.” That struck people who thought logically as incredibly wrong-headed, since if you were finding something “early” you certainly weren’t preventing it.

That message still prevails in some communities, where young women seek mammograms because they have heard it will “prevent” breast cancer, and others are stunned to find they have a diagnosis when they recently had a mammogram.

Komen, under pressure from breast cancer activists, changed their message on mammograms to “early detection is your best protection.” That’s not much better, because mammograms don’t protect you against breast cancer, though, in some cases, if combined with appropriate and timely treatment, they can protect you from dying of breast cancer.

One of the consequences of breast cancer’s “popularity” is that, for some time now, there has been a great deal of money spent on research into the disease. Appropriately, some of that research has been spent on mammography screening.

As the information from those studies has emerged, it has become clear that the messages that the public has been receiving about mammograms have been so over-simplified that women both overestimate the benefits of the technology, and fail to understand the limits of the concept of “early detection.”

Komen has long led the way in what the public understands (and doesn’t) about breast cancer. What has Komen done as this information has emerged? They’ve reinforced their old messages, with their leader, Nancy Brinker, arguing that it would be too confusing to women to change the message now. Interesting, coming from the person who spearheaded the confusion in the first place.

I often hear the argument that we can’t discourage people from getting mammograms because, for poor women, mammography screening is often the only way they get health care. I understand this problem, but I don’t think we can let all of our conversations and understanding of breast cancer rest on mammography’s shoulders. The real issue for poor women and all people who are medically underserved is access to comprehensive, affordable health care. These folks are as entitled as the rest of us to messages about health that take into account the information available.

Oversimplifying is dangerous, especially when information is available that would help people understand better the diseases that affect or may someday affect them.

© Barbara A. Brenner  March, 2011

Posted in ALS Treatment, Breast Cancer, Medical Science | 51 Comments

Don’t Make Promises You Can’t Keep – Especially in Health

Posted on March 23, 2011 by bbzinger

You’ve heard or seen them: the ads or promotions for organizations promising that, if you’ll just support them, they will cure or eradicate any disease you care about. In ALS, it’s the ALS Association promising to “create a world without ALS.”  That’s a bold promise, since there is no effective treatment for ALS, and prevention strategies are missing in action. So where will this “world without ALS” come from?

In breast cancer in particular –and cancer in general — the promises take many forms; for example:

An organization in Northern California calls itself “Zero Breast Cancer,” claiming to be “looking forward to a world without breast cancer.” http://www.zerobreastcancer.org/ This goal is, to say the least, interesting, since breast cancer has been with us since ancient Greek civilization, which is where the word “cancer” comes from.

The National Breast Cancer Coalition has “Set a Deadline for the End of Breast Cancer.” http://www.breastcancerdeadline2020.org/. If you’re wondering what date to mark on your calendars, the deadline is set for January 1, 2020. This promise echoes the assurances given when the National Cancer Institute was created in 1937. The answer to cancer has always been just around the corner. It also reminds me of a time several years back that Susan Love, the famous breast cancer surgeon, announced that she would solve the breast cancer problem in 10 years. When I asked her when we should start counting, she gave the answer that drives most of these kinds of promises. She said, “We start counting when we’ve raised all the money.”

ASCO – the American Society of Clinical Oncology and the largest organization representing cancer physicians in the world — is trying to raise money through what they are calling the Conquer Cancer Foundation, which describes itself as “committed to a world free from the fear of cancer.” My read is that they want to be sure there are treatments available when people get cancer (which is where cancer docs make their profits, of course), so that cancer is a disease that is feared less, not experienced less.

The Susan G. Komen For the Cure Foundation is “fighting every minute of every day to finish what we started and achieve our vision of a world without breast cancer.” http://ww5.komen.org/AboutUs/OurWork.html Of course, since the focus of the Komen Foundation is primarily on detection through mammography screening, it’s hard to understand how we get from finding cancer to a world without the disease. Also noteworthy is how Komen uses the word “cure” (they have trademarked the phase “for the cure” and they aggressively enforce that mark. See http://www.newsy.com/videos/for-the-cure-controversy-over-pink-trademarking/).  They repeatedly use the word “cure” in a context where prevention is more appropriate. For example, Komen claims that “Without a cure, 1 in 8 women in the U.S. will continue to be diagnosed with breast cancer.” Of course, even with “a cure” women will still get breast cancer – otherwise they won’t need a cure.

I recognize that hope is important. But do we have to lie to people so they’ll hope for the things they most desire when they or their loved ones are sick?

I cannot tell you how many people I met in my years as a breast cancer activist who believed that “the cure” was within reach, only a few years away if we just threw more money at the problem. This was not a surprising view, given the kind of information most organizations put out about cancer. It’s this kind of information, after all, that drives people to want to support cancer research.

A more rational view – one that explores the assumptions and constraints underlying cancer research and puts the cancer research effort in perspective — is hard, but not impossible to find. Breast Cancer Action’s Cancer Policy Perspective provides such a view: http://bcaction.org/cancer-policy-perspective/. It will take longer to read than this blog, but nothing is a simple as the folks making these promises would like us to think.

Really, is honesty when it comes to what can be accomplished in health really so much to ask?

© Barbara A. Brenner March, 2011

 

Posted in ALS Treatment, Breast Cancer, Medical Science | 14 Comments

Patient? Who’s patient?

Posted on March 15, 2011 by bbzinger

Those of you know me know that I care deeply about words and what they convey. Years ago, not long after I became the Executive Director of Breast Cancer Action – www.bcaction.org – I had occasion to look at the derivation of the word “patient.”

The word patient originally meant “one who suffers”. This English noun comes from the Latin word patiens, and the verb, patior, meaning “I am suffering.” It is related to the Greek verb paskhein, meaning to suffer).

Maybe it makes sense to call people who are receiving medical care patients. After all, if they weren’t suffering, they wouldn’t need care, right?

But the word “suffer” has another meaning besides feeling pain or distress. It also means to tolerate or endure pain or injury, or to be at a disadvantage. If this is what it means to be a “patient,” why would anyone want to be one?

No one wants to suffer – in any of the ways the word is defined. We particularly don’t want to suffer when we’re in need of medical attention. But it’s quite common, I think, for people to have the hardest time getting what they need when they are not feeling well or are dealing with a medical issue. (For a great perspective on how “patients” formed a movement to change the course of history, check out Sharon Batt’s Patient No More: The Politics of Breast Cancer.)

I am once again in the position of needing medical care, and too often have to struggle to get the care I need. I’m better equipped to do this than a lot of people, partly because I have so much experience being an advocate for others. When I think of what I have to do to get the best care for myself, I am deeply troubled by the fact that so few people have the resources I have that help me get what I need.

I think there are many things that might keep us from advocating for what we need in medical care. One thing is lack of access to care at all. But, for those of us have health care available to us, there are a number of things that might keep us from advocating for ourselves

  • We think doctors are the experts
  • We think we don’t know enough to ask the right questions
  • We’re afraid that, if we ask too many questions, our doctors won’t like us and won’t take good care of us
  • The situation in which we find ourselves is so intimidating that we are incapable of being effective advocates for ourselves.

Here’s an example of what it means to advocate for one’s self: I have Kaiser health insurance. Kaiser has a neurology department, but, as far as I can tell, they don’t have an ALS specialist. When it became clear — after many, many tests (there is no definitive test for ALS, so you have tests to rule out everything else it might be) – that I was probably dealing with ALS, I asked for a referral for a second opinion at the Forbes Norris Center in San Francisco, which specializes in ALS. That referral came easily enough, and I saw the folks at Forbes Norris twice. When I scheduled my next follow up at Forbes Norris, I knew I would need another referral, since the first one was time limited.

So I wrote what I thought was a very nice email to my doctor at Kaiser, explaining why I needed another referral and my preference for the comprehensive, coordinated care that Forbes Norris provided.

The reply I received was not encouraging. My doctor was “unable to provide” the referral I requested. She offered instead to refer me to physical and speech therapy at Kaiser, and to schedule a neurology appointment “to help with all of [my] needs.”

Since this what not the answer I wanted or needed, I wrote to my Kaiser doctor again. (The email system at Kaiser makes communicating with practitioners quite easy.):

Since this was not exactly the answer I want or needed, I wrote to my Kaiser doctor again:

As I tried to indicate in my [first] message to you, the considerable advantage to me of continuing my care at Forbes Norris is that all of the specialists who deal with ALS patients – from speech therapists, to physical therapists, to neurologists to social workers — are all in one location, so that my limited energies and ability to move are not taxed by going to 4 different sites.

As for a referral to Physical Therapy, I have had a PT workup at Forbes Norris. I don’t see why I should have to subject myself to another one. And the speech therapy referral you gave me last time, was, as you suspected it would be, less than helpful. By contrast, the speech therapist at Forbes Norris is amazingly helpful.

. . . please advise to whom and how I appeal your decision not to refer me to Forbes Norris for continuing care.

The next message I got said that my doctor had forwarded the message above to her chief of staff, and a new referral was on the way. My doctor apologized for the “annoyance” of having to go through this song and dance. Annoyance is one word for it. Nonsense is another.

Patient? Not I. And I suggest that those who need something from the medical system not be patient either. If you can’t advocate for yourself, find someone who can advocate for you. None of us needs to suffer at the hands of the medical system. Let’s find something else to call ourselves besides “patients.”

© Barbara A. Brenner March, 2011

 

 

Posted in ALS Treatment, Illness | 26 Comments

Don’t ask me how I am!

Posted on March 5, 2011 by bbzinger

Friday, March 04, 2011

Years ago, over lunch with a friend who had been treated for very advanced breast cancer, I asked the question many of us ask when we see people we haven’t seen for a  while: “How are you?” My friend very kindly responded that the question was one to which, given her situation, she couldn’t possibly know the answer. Better for her if I asked “How are you today?” or “What kind of a day are you having?”

If you think about it, none of us can really know “how we are” on any given day. We can know how we feel, but not what’s going on inside our bodies. For example, people who turn out to have breast cancer often feel healthy until they are told by their doctors that that lump found on their most recent mammogram is not benign.

And we can sometimes not tell by looking at someone that s/he is ill. If you look at me  now for example, I look pretty much as I always have. My hair isn’t falling out, my skin tone is good, and my smile is pleasant. But I have a disease — ALS, or Amyotrophic lateral sclerosis — a degenerative neurological illness for which there is no cure.

When people ask me how I am, it drives me nuts. I don’t want to discuss with everyone I see what it means to live everyday with a disease that I know will make me less and less functional, and ultimately kill me. How fast this will happen is unknown, but that doesn’t make it easier to talk about.

What kind of a day I’m having, or how I am today, is an easier question to answer: I’m tired or not, it’s easy or hard for me to walk, or I have too much going on to tell. But at least these kinds of questions don’t feel as prying and insensitive as “how are you?”

Christopher Hitchens, author and journalist who has advanced esophageal cancer, recently said something when asked how he was that is worth remembering. He put it something like this: “I’m dying. So are you. But I’m doing it faster than you are.”

I’m too busy living to spend time answering questions about my thoughts on dying. And, in any event, I don’t want to discuss that topic with everyone I see. So, don’t  ask me how I am.

P.S. Big thanks to Roche Janken for setting up my website, and encouraging me to write this particular blog.

© Barbara A. Brenner March, 2011

 

 

 

Posted in Illness | 58 Comments