Speaking Truth to Healthcare

               

At the same time that so much attention has been on the Supreme Court’s decision about the Affordable Health Care Act this past week I have been reading some remarkable books about health, care, and the ways in which the health care system has fallen far short of what it could be.  What is stunning in what I have read is that many of the things that could make a huge difference in the quality of health and care we could have (not to mention how much we spend on health care as a country) are A) already known, and B) not that expensive or high tech.  In other words, there appears to be a lot of low-hanging fruit,  just, well,  hanging there.

Even though these books were new reads for me, they aren’t newly published.  Maybe I missed all the hype when they were new, or maybe there wasn’t as much hype as there should have been.  But if you haven’t read them, and you care about the cost and quality, and the future of your health, I suggest you should.

First I read Gary Taubes’ Good Calories, Bad Calories, published in 2007.  It is a large book dense with his descriptions of what is known (through research and clinical trials) about how our bodies use food, and how the government, public health officials, and clinicians have advised the public over the last half-century.

Taubes spent years combing through research, reading conference transcripts, and interviewing people.  He has done an incredible job of making it all understandable (yes, you may find yourself re-reading paragraphs or whole sections, and it’s totally worth it), but an even more impressive job of calmly conveying what amounts to evidence that the U.S. public has been getting exactly the wrong information about what to eat to not only stay lean, but to have the best chance to avoid many of the diseases that plague our families and our population: type 2 diabetes, cardiovascular disease, cancers, and even Alzheimers.  Let me repeat that bit because it is hard to believe, I know– exactly the wrong information.

If what Taubes has uncovered and is conveying in this book turns out to be true– and he makes a brilliant case– then the health care system, public health officials, and government officials owe all of us a HUGE apology.  As soon as possible.  And First Lady Michelle Obama needs to read this book and Adjust her, otherwise well-intentioned, initiative to encourage kids to get to healthy weights.

In 2010 Gary Taubes published a shorter version of the first book about diet and health.  It is titled Why We Get Fat, and What To Do About It.  Although this could be considered a more user-friendly version, it’s certainly not dumbed down, probably because the information is so critical, and Taubes doesn’t underestimate the public’s ability to get it.  The title’s a bit unfortunate since it’s about so much more that being fat and wanting to do something about it.  Anyone who eats food needs to read one or both of these books.  Gary Taubes has done the public an incredible service.  Thank you Gary Taubes.

Then I read Evan Handler’s 1997 book Time on Fire: My Comedy of Terrors.  The book is his memoir about being diagnosed with leukemia and his journey through the health care system as he does battle — not only with the disease– but with incompetency, rudeness, outsized egos, and also excellence.  There are a lot of memoirs about struggling with all manner of health problems, but what made me seek this one out was that I heard Handler being interviewed on NPR.  I was half listening until he said “I name names.”  And he does, the good, the bad, and the outrageously inconsiderate: hospitals, doctors, nurses, and assorted care providers.  Thank you for that Evan Handler.  It’s about time.

Is Obama’s Blackberry Ringing Yet?

Shortly after Barack Obama was elected some journalists had fun writing about whether Obama would be able to keep his beloved Blackberry after the inauguration.  Security folks reportedly considered it a risk for the President to be carrying an electronic device that might give his location or movements away.  Obama’s argument for keeping his own phone included that it would be a way for his “outside” life to keep him in touch with reality.  He said he liked the idea that if he lost touch with the ‘real world’, and got too caught up with inside-the-beltway- thinking,  one or more of his old friends could call him up and say, “Hey, what the heck are you doing?”

I haven’t heard anything recently about whether Obama still has his Blackberry but I’ve been thinking about it lately.  Maybe it’s our last hope.  So, whoever you are out there who has that number, please, dial now.  Say, “Listen pal, you need to get real.  You need to give some sign that you get it that people want you to push out a bold and specific, and BIG, plan.  The time is ripe and people are ready to climb on board with you if you will just let them know you are going to get your hands dirty and work right alongside them.  Ask for sacrifice and you will get it.  And my friend, you can NOT get away with that ‘you’ll always be AAA in my book’ crap.”  (And if the Necco Company doesn’t immediately start printing that on those little candy hearts, they are missing a great opportunity.)

Then tell him that at the very least he needs to fire all his speech writers, and replace at least half of his advisors.  Tell him to get angry and to make sure people know it.  Then tell him to hang  up and get busy writing a serious plan to present to the American people.

If he rationalizes, whines, or says don’t worry, Congress will eventually come up with a compromise…then it’s time to hang up and give that Blackberry number to the rest of us.

Politics, money, the public and revolution…

Okay.  A commentator’s recent suggestion that “revolution is on the table” is, thankfully, still greeted in most parts with surprise and dismay.  Come a time that we aren’t surprised when commentators say this, then…  Anyway, it should come as no surprise that people are getting pretty fed up, feeling that the public’s voice has pretty much come unhinged from Washington.  Washington, instead,  has become ever more tightly hinged to — money.  Here is what Robert Reich writes in his book Aftershock, about the indirect, but nonetheless, potent effects of money:

No policy has been altered, no bill or vote willfully changed.  But inevitably, as the politician enters into these endless social rounds among the networks of the wealthy, his view of the world is affected.  Increasingly, the politician hears the same kinds of suggestions, the same concerns and priorities.  The wealthy do not speak in one voice, to be sure, but they share a broad common perspective.  The politician hears only indirectly and abstractly from the less comfortable members of society.  They are not at the coffees and dinners.  They do not tell him directly and repeatedly, in casual banter and through personal stories, how they view the world.  They do not speak continuously into the politician’s ear about their concerns.  The politician learns of those concerns from his pollsters, and from occasional political appearnaces back in his home district, but he is not immersed in them as he is in the culture of the comfortable.  In this way, access to the network of the wealthy does not necessarily buy a politician’s vote.  It buys his mind. (pgs 109-110)

…Perhaps the most convincing evidence that the game is rigged is the deafening silence about all this.  You would think political leaders would talk about the nation’s surging inequality and the flattening of middle-class incomes.  But as the divergence in income and wealth has grown to stunning proportions, it is rare to find even a Democratic politician who dwells on it. (pgs 113-114)

As CNBC’s Rick Santelli once famously screamed, “President Obama, are you listening to this?”

After the Snow: How will we know when Washington, DC starts up again?

So.  We who live in the mid-atlantic are bracing for another large snow storm.  Snow shovels are sold out (I couldn’t even find one in stock on Amazon), and hardware stores are putting piles of water softener salt near the front of the store for people to use on sidewalks and steps.  The TV pundits (in an amazing and fleeting display of nonpartisan and unbiased commentary) are all concurring in saying that Washington, DC was, and still pretty much is, shut down with the two feet of snow they got.  More is on the way, and so they are fretting that DC will be shut down even longer while they dig out yet again.

But how, I wonder, will we be able to tell when Washington starts up again?  I haven’t noticed much getting done there for quite some time.  A very, very long time in fact.  So here’s a modest proposal.  Maybe it would be a kindness to us all if DC would stay snowed in until about, oh, maybe the Fourth of July.  That would be a nice patriotic time to start up again.  And maybe a few months of isolation during which to reflect, do some stretching exercises,  and examine and re-order their priorities would give them (and us all, for God’s sake) a breather and a fresh sense of possibility.  I know I could use a break from hearing about how little they are getting done…I can only imagine how exhausting it must be for them- there in the thick of all that lack-of-progress.  It must be mind-numbing.

So let’s let DC save some money, give the road crews and public transportation employees a nice long vacation, and let the snow fall where and as deep as it may.  Let’s let it stay on the ground until the sun stays out long enough to melt it (as God probably intended anyway).  And if the snow eventually buries the city completely?  Let’s reconvene (online) at that point and talk about picking a new location to be our capitol so we can start over from scratch.  There now. Well I don’t know about you, but as the snow begins falling here, again, I am feeling almost…yes, definitely…hopeful.

The public is out ahead of health care providers on Celiac Disease

(The following is my reply to New York Times Consults blog January 10, 2010 article by Dr. Sheila Crowe.)

Five months after being diagnosed with Celiac Disease (at the age of 59) one of the most baffling things about the way the medical community views this disease (and there are more than a few) continues to be the perverse insistence that people shouldn’t adopt a gluten-free diet on their own…that it might lead to things like: inability to get a “definitive” diagnosis (so eat gluten again for a while and then test if you want to…or not, by that time a “definitive diagnosis” is not the objective for most people- whose needs are the priority here?); greater expense (almost all foods as grown or raised are gluten-free – how have we reached the point in our view of “food” that we can only imagine mostly buying processed foods?); nutritional deficiencies (many if not most gluten-filled diets are already deficient for lots of reasons, anyone who starts paying close attention to what they eat is almost certainly going to be eating more nutritiously); that going on a gluten-free diet is a “life-long commitment”  (sure, but only as long as you want to keep feeling better, and eat a less health-damaging diet – and let’s be real here, you can quit the diet any time you want to… if you want to.  It’s like saying that “eating is a life-long commitment,” it’s a free country); and the amazing-to-me statement by Dr. Crowe that if someone diagnoses themself, “it may encourage family members to be screened for the disease, even though you may not really have it.”

Could I really have read that right??  That it might lead to MORE screening?  More use of a simple blood test (my insurer paid $98 for the comprehensive Celiac Panel) that could allow someone to discover they have Celiac Disease and to drastically improve their quality of life, and minimize more damage to their health, all with just a change in diet?  Then let’s hear it for people who take things into their own hands because they are tired of waiting for help from the medical community, or who have actually been turned down or belittled when they asked a health care provider whether they should be tested for Celiac Disease.  Why isn’t everyone being told about and screened for Celiac Disease?

I feel that the health care system failed me- for decades- by letting the profit-seeking pharmaceutical companies, device-makers, technology providers, etc., determine the primary course and priorities for health-care providers in this country.  I followed all the rules and they and the system let me down.

Even after decades of lactose-intolerance, some years with abdominal distention, eventual diagnosis with thyroid disease and then osteoporosis, no health care provider ever offered anything other than a new prescription.  Eventually, I decided to look into it myself, and it took me all of a 30-minute Google search to discover that I almost certainly had Celiac Disease (and yes, blood work and intestinal biopsy confirmed that – for the doctors.  I already knew it.)  I also was amazed to learn that there is a home test, the Biocard Celiac Home Test (blood test for TTA) that costs about $40, is very accurate and specific (although not as inclusive as lab testing, but a great start) and although for sale in Canada and Europe…is not for sale anywhere in the United States.

The public is way ahead of most health care providers in this country when it comes to Celiac Disease and other varieties of gluten-sensitivity.  Health care professionals had better figure out a way to catch up other than to criticize people who have decided to take responsibility for themselves by getting the help and information they need, even if they have to do it on their own.

Adventures in Health Care Land

One thing I have read recently (and I believe to be very much in evidence today) is that the health care system in the U.S. (even things we consider preventative) is largely driven by the drug industry; the things that get tested for, treated, etc. are things for which someone can make a profit. I recently learned (in spite of the health care system not because of it: armed with information gathered from the Internet I approached my own health care provider) that I have Celiac Disease. I have since been dismayed to learn that about 3 million people in the United States have this disease and 97% of these people have no idea they have it (studies indicate that 40% of people with the disease have NO symptoms at all) but will eventually have serious, and expensive-to-treat problems such as liver disease, lung disease, bone disease, cancers, or a whole bunch of other problems. My insurance company paid $98 for the blood work that diagnosed the disease and the completely-effective treatment is simply to follow a gluten-free diet (no wheat, barley or rye) that won’t cost anybody else anything. Why not screen everyone for this? Are there other things like this that could be screened for? Could the government set about identifying things like this (and widely disseminating information) that could be huge money-savers?

Have you been tested?

Watch it online – A compelling and provocative new video documentary about the public, health care reform, and the struggle to decide

You can now watch a compelling new documentary produced by the Kettering Foundation and ThinkTV about the choices confronting the public about health care reform.  The 30-minute video was produced and narrated by Amy Lee of ThinkTV, a PBS station in Dayton, Ohio.  The documentary, titled Coping with the High Cost of Care: Where is the Public Voice? can be viewed in three parts (each approximately 10 minutes long):

View Part I of Coping with the High Cost of Care: Where is the Public Voice?

View Part II of Coping with the High Cost of Care: Where is the Public Voice?

View Part III of Coping with the High Cost of Care: Where is the Public Voice?

Judging by Gender

Attitudes towards professional women have changed over recent decades in America, but there are always reminders that many prejudices remain.  Laws have changed, but in many realms attitudes have not.

 

I read David Brooks op-ed piece in today’s New York Times, The Way We Live Now, with great disappointment.  Although superficially, Brooks seems to be acknowledging Supreme Court nominee Judge Sonia Sotomayor’s achievements up to this point in her life, he is really pointing out (admonishing?) things (negatives made to sound more negative for the fact that she is a female) that are far less often brought up in articles about high-achieving men: at a young age she lost a parent; she had a lot of mentors; she worked really hard; she smoked and drank a lot of coffee (would this really even be mentioned if we were examining a man as the next Supreme Court Justice?); her marriage ended in divorce; and yes, again, she worked really hard.

 

Brooks makes a point of saying that he isn’t just writing about a professional woman balancing aspects of her life (except that he is) and that the pressures he is referring to affect both women and men (except that, in that case, why point out the obvious now, and why use Judge Sotomayor as an example?)

 

The kind of thing David Brooks is doing is very subtle, and very potentially damaging, because it is a “read between the lines” attack on someone who has become successful the same way most people have– by working very hard and by learning from others who are willing to be helpful.  By delineating what it takes to rise to this point in her life, Brooks implies that there is something perverse about it (or by association, about the person), and oh yes, he bemoans that too many of us are subjected to these same pressures…sigh…isn’t life tough.  And, I almost forgot another “strain” (an odd choice of words until you remember he is writing about a woman) in Sotomayor’s life– she spends time with a lot of other “high achievers.” 

Who gets to speak for the public engagement movement? Anybody who wants to.

Efforts to help the public find ways to work on difficult public issues and — more importantly — to be heard by elected leaders and policymakers, are gaining momentum.  The Obama administration has expressed some interest in engaging the public.  The depth of the new administration’s interest remains unclear, but they are speaking some of the language.

Some groups have been working to make inroads with national leaders, and to do it in a unified way; to speak “with a unified voice,” on behalf of public-engagement and dialogue and deliberation advocates.  Well, that’s encouraging, but its’ also a little unsettling for a number of reasons.

It’s enouraging to see the effort that’s being made to turn up the volume of those who speak on behalf of the need for government to have good ways to connect with the public.

But the more diversity; the more voices; the more work (and the more kinds of work) being done, the better. It seems to me that the last thing we need is to try to “speak with one voice” in an attempt to explain why it’s better to listen to many voices than to listen only to the most unified or loudest.

Shouldn’t we be encouraging LOTS of individuals and groups to contact the administration (or anyone else they want to contact)- with their experiences, their visions, their explanations of why public deliberation is so important? Wouldn’t we welcome it if representatives of the administration said, “Yeah, we’ve been hearing from a lot of people who think this is great stuff ; who are already doing this kind of thing; and who are sharing their guiding principles with us.” Wouldn’t that be better than the other extreme which would be if they said, “You’re the only people we’ve heard from about this.”

Innovation and progress happen best when there are lots of people doing different things, or when lots of people are trying to do the same thing, but doing it a little (or a lot) differently. We should encourage, and welcome, as much work, and as many voices about that work as possible. I don’t believe this work is a zero-sum game. I won’t accept that the more voices (or dialects) there are speaking out about this work, the more it may “weaken each of our cases.”

We need a yeasty environment for this kind of work to expand, thrive, and for it to be taken seriously by our leaders at every level. If it ever becomes neat and tidy and unified, then it will have become just one more kind of civic busy-work.

Having children by the litter

Humans aren’t designed to safely and successfully bear more than one or two children at a time.  Before the modern advent of medical treatments for infertility, anyone who gave birth to more than two or three children at one time was celebrated as a phenomenon.  Public judgements about the parents’ wothiness or intentions did not enter the picture.  It’s a different story today– a morality story where parents are judged as either good or bad.

Today, twins seem to be everywhere, and higher numbers of multiple births are becoming less rare.  Still, when one pregnancy results in the birth of six, or seven, or eight babies, it becomes the target of public attention…and of moral judgements.  Apparently we, as a society, have come up with a checklist to decide what is acceptable (even laudable) and what is not (even despicable).  Two large families in the public eye today have drawn starkly different judgements from the public.

Nadya Suleman, a 33-year-old single mother of six young children delivered eight babies after receiving infertility treatments.  She and her children live with her parents in a small house.  She is unemployed and receives food stamps.   Jon and Kate Gosselin, a couple in their late twenties, and their eight children (a set of twins and a set of sextuplets, all born after infertility treatments) are the stars of the very popular Jon & Kate Plus 8 show on The Learning Channel.   The judgement is in: the Gosselins are good and Nadya Suleman is bad.  

Both families are the center of attention right now–Suleman gets public assistance because she is officially poor; the Gosselins get public assistance (as in viewers and advertisers of their show) because they are cute and pass the morality tests we have apparently set.  One family has no father/husband present, is poor, had six children to begin with (apparently already having two is under the limit needed for disapproval), and doesn’t so far, seem to have a clever, engaging personality.  The Gosselins are married (although increasingly impatient and bickering with each other- their way of “communicating”); he has a job; they trot out their religious beliefs just often enough to make the point, but not so often as to seem self-righteous; and the kids are adorable.  They have turned their life with their eight young children into a money-making television show, complete with sales of DVDs, t-shirts, and books.  The ethics problems and the trade-offs are worth at least considering. 

Adults can understand and consent to giving up privacy in return for financial gain.  Such young children can’t possibly understand, let alone consent to, the kind of invasion of privacy they are being subjected to.  The show also seems increasingly out of place in today’s economic climate.  How many hardworking families with just one or two children can barely afford to go to the movies, as they watch the Gosselins take fabulous trips and get free services like plastic surgery, hair transplants, and tooth whitening?  It’s probably almost time to give the Gosselin children back their privacy and let them grow up without the whole world watching them do it.  Their loyal fans will miss them, but reality shows should stick with exploiting adults, not children.  And they won’t any longer present a tempting (to some with poor judgment and immature thinking) role model of hyper-infertility-fertility to emulate.

Meanwhile, public contempt is being heaped on Nadya Suleman, who may or may not be seeking to use her children as an ATM.  Her children also deserve to grow up with love and support, amidst caring adults.  And without the rest of the world watching their every move.  I wish them well.