Lewy Body Dementia

I just finished reading Dr Tom Graboys memoir describing his descent into dementia and Parkinson's disease. I give the writing 3 stars, the tremendous effort it must have take to organize and write the book a 4th star, and a big fifth star for the moving poem at the very end that was written by his dying first wife a few years ago. It's a quick read but well worth it.
I was amazed at how many symptoms Dr Graboys experienced that were also part of my dad's disease. My dad suffered from Lewy Body Disease and died in 2004 of an overdose of an anti-psychotic drug-Olanzapine (Zypreza)-after he contracted Neuroleptic Malignant Syndrome, an uncommon but not improbable outcome of overdose with this class of drugs. Dr Grayboys talks about his struggles with driving and with writing. My father clung to his right to drive for as long as he could, even driving my mother to the coast 60 miles from their home just months before he was hospitalized for the last time. When they got to the boarding house that night, he could not figure out how to get the car into the driveway so the hotel owner had to park the car for him as he stood by my mother's side and watched. Looking back, we realize what a tremendous feat of concentration it must have been to drive for 2 hours after dark to take my mum on that last trip. She spoke to me during the holiday, full of dread for the journey home. He made it admirably, going no faster than 30 miles an hour at any time. My dad always loved to drive and once his disease had really taken hold it was one of the few expressions of his utility to the family that he should continue to taxi folks here and there. Later, when he was in the nursing home my mum sold the car (she didn't drive) but we could never tell him it was gone. It would have broken his heart, at least what was left of it.
Dr Grayboys talks about his disease as being primarily Parkinson's Disease with some Lewy Body Dementia. In my father's case, the doctor had suggested he had full blown Lewy Body Disease and that the difficulties with gross motor skills were Parkinson-like rather than actual Parkinson's. After a review of the literature on Lewy Body it seems as though the symptoms define the disease and having Parkinson-like symptoms along with dementia means one has Lewy Body Dementia. Dr Graboys described his stooped appearance and I remember looking at my dad at one point and thinking he was physically reverting almost to the stage of fetal development where the fetus looks looks like a stumpy seahorse. His neck was thickened and stiff so he could not properly look up which emphasized the curvature and his stoop even more. It also gave him an appearance of extreme humility, which was fitting, because my father had always been one of the most humble human beings I have ever known. Dr Graboys seems more aware of his disease than may father was although the extent of denial was similar in each. Every symptom was entertained with an elaborate theory until finally in Dr Graboy's case, he had to give up practicing medicine, and in my father's case, the men in white coats came to take him away.
Lewy Body Dementia is not well-understood and according to the Lewy Body Society, under-diagnosed. 1 in 199 people are afflicted in their later year which adds up to about 150 million people across the States. There is no cure, yet, but Dr Graboys does mention a drug regimen that seems to be helping him- a combination of Aricept and Namenda, both indicated for dementia but usually with little long-term benefit. My father was considered past all help in that department and spent his last two years being calmed with the Zyprexa that eventually killed him. The Lewy Body Dementia Organization has an excellent website at www.lbda.org. The latest issue of their newsletter has an article on Dr Graboys and a touching picture of him in his local coffee shop which he still drives to everyday. There is also an article on one of the most fascinating symptoms of the disease (although it is not a definitive sign)--REM Sleep Behavior Disorder (RBD), where sleepers act out their dreams. For my dad this started many years before any other symptom and was a source of continual pain in my parents relationship. My mum couldn't help but take it personally when he would lash out is his sleep almost every night, and took to sleeping in a different bed once the flailing began. My dad remembered nothing of these episode of course.
To me, the disease is fascinating, terrifying and deeply sad. I look forward to researching more about the underlying pathophysiology and reporting back on what I find to this blog.

Scanning the mind--a quacker or not?

Another one from Wired.com that fits the sorcery or science mold (Brain Scans as Mid Readers? Don't Believe the Hype, Wired, May 19, 2008). The article deals with brain scanning using functional and structural tools to determine how 'healthy' the brain is. The writer believes it is sorcery, the doctor he reported on believes it is science. I think it is classic Edge science where both sorcery and science are involved. The scans show particular features of an individual's brains, but the reported argues that this is meaningless without the solid hypothesis generation and testing that is a hallmark of 'real' science. The comments to the article are also interesting in that you get hearty agreement from some that the guys is a quack, while others defend the good doctor with a much vigor. Science at the edge involves observation and tolerance of soft measures. Many are uncomfortable with this, and with good reason. But, it has to be done this way if new advances are to be had.
My take: the images give a doctor data that he can use along with regular clinical data to better form his opinion about what may be troubling the patient. It think the approach is probably more useful to understand brain irregularities when a patient has symptoms rather than just assessing overall brain health. The doctor's recommendation to take Gingko to improve activity in the brain is dubious and doesn't add to his credibility in my opinion. Edge science is by definition unproven. Benefits are often seen before they can be explained or clearly predicted. In fact, that is true of even pharmaceuticals if one takes the data on a person-to-person level. I'm reluctant to endorse these tools for marketing purposes but already we see them employed to this end. I don't know why i don't like it; it just feels a bit too predatory I guess.
I think we must remain open to the possibilities highlighted in Dr Amen's work for brain assessment as it accompanies more traditional psychological and psychiatric methods. The reporter is judging the work and his own 'diagnosis' by Amen based on reductionist values and he can't be blamed for that. Science has relied on these values since the Renaissance. We are now moving towards less reductionist approaches to science and medicine (we know too much to settle for pure reductionism in this day and age) and, provided we stay grounded in our objective of genuine enquiry, I think brain scanning in all its guises must be observed, debated, and eventually included (or not) as an important tool in the diagnosis and treatment of psychiatric brain dysfunction. It's role in marketing, however, requires some ethical debate. The article asks the right kinds of questions; the comments back show the polarized thinking that usually occurs at the Edges.
See: Wired Magazine 16.06 on 19th May 2008

Gene testing under threat in California

Oh boy. Some interesting news today on wired.com about the recent cease-and-desist letters sent to 13 genetic testing companies in the state of California. The letters can be found at wired.com and basically state the the companies, which include 23andme, and Navigenics, are breaching 7 statutes regarding patient testing and lab certification by procuring clients directly rather than through prescription. What is at issue here is the role of physicians in genetic testing, and much rests on whether genetic tests results are considered merely information for the consumer, or more significantly, diagnostic for the patient.

I recently had a conversation with someone who had taken a genetic test and is now in possession of her genetic profile and its associated risks. She assumed the risks were definitive and that we would progress to certain diseases states if she id not take action. So, she began taking the potions sold by the gene testing company in order to protect herself from what would otherwise be genetic certainties. There are a few things wrong with this picture. Firstly, the tests are not usually definitive. As I said in a previous blog, diseases are the result of complex interactions between genes, physiology and environment. There is simply not enough research to pin a particular disease on most genetic variants...yet. It may come one day but for now we have indications of potential risk and that is all. There are certain genes that do confer serious and significant risk; the Huntington's Disease gene tests are predictive for example and testing should, and is, approached with caution (see previous blog). Secondly, most individuals are not sufficiently knowledgeable about genes and their effects to know how to interpret the genetic 'information' they get back from gene testing. The lady I spoke to believed they were definitive, but also believed the vitamin concoctions she had purchased would prevent bad things. Again, there are signs that supplements may be helpful in preventing some diseases, but most claims are not backed up by rigorous study. Gene tests can seem self-serving when they are packaged with convenient supplements to assuage the fear wrought by the tests in the first place.

The action of the health department in California is intended to protect the public as far as I can see. The situation seems complex but I think it is simple at one level. Personalized medicine is touted as the next big thing by the media and the companies who provide the tools. The benefits are obvious; targeting the right medicines to the right people to reduce side effects and improve effectiveness. The public wants personalized medicine and sees genetic testing as a first step to take control over their 'personal health'. It is natural and to be expected that someone will want to make a business out of it. It is also natural that the doctors feel they have lost control over an important health parameter especially since the data requires objective interpretation to be useful. My vote would be to keep gene testing as an option for folks who want it, ensure it is ordered through physicians, require ordering physicians to maintain a state-of-the-art understanding of the implications of gene testing and the risks it can potentially identify to the patient so that they can counsel the patient on findings, and, ideally, ensure all gene-tested subjects are entered into an anonymized database that also tracks their disease development should it occur. This way, the knowledge base on genetic risk grows and informs future interpretations.
In the Wired.com article the CEO of Navigenics says she hopes the health department officials understand the difference between a genetic risk and a diagnostic. As I see it, the real question is, do the patients?

Huntington's disease--a case of genetic determinism

After yesterday's blog I said that most genes are not deterministic and the some genes confer some risk of some disease either alone or in combination with other genes. The Huntington's Disease gene is different. Inherit this one and the disease is yours. For a truly gripping account of one man's decision to test or not test, check out the June 16th New York Magazine, Mind Bomb by Kevin Baker. Kevin's mother has the disease and he has watched her decline over the past 13 years. Is he witnessing his future? You have to read the article to find out but regardless of his fate, the very act of taking the test is fraught with caution, process and bravery. This test is not one that is undertaken lightly. As one nurse put it, once you know, you cannot not know.
Read the article. It's an enlightening tale of what all of our futures could be like as we learn more about what our own genes mean for our future health.

Health advances-not so fast

A section of New York Magazine, June 16th 2008, begins with the words, ‘medicine advances at astonishing speeds’. It’s a profound statement but is it accurate? Of course it depends on what you mean by astonishing speed, but I think medicine progresses quite slowly considering the rate at which we accumulate new insights into disease and it’s potential treatments. We hypothesis and test at an alarming rate, but it can take an interminably long time for a new medicine to reach the pharmacy, or for a medical paradigm to shift. Take the Human Genome Project for example. This was a 13-year old project coordinated by the National Institutes of Health and the US dept of energy. Multiple countries participated as did the Wellcome Trust, a premier UK research foundation. Much was made of the effort which identified most of the 12-25,000 genes estimated to make up the human genome, and determined the sequence of the 3 billion chemical base bases that make up human DNA. (ref: www.ornl.gov/sci/techresources/Human_Genome/home.shtml). As it neared completion, widespread anticipation grew among the general public about the slew of medicines that would surely follow the last gene identified. We are now 5 years on and there is little to show for it in terms of medical breakthroughs. The NIH itself admits that the analyses of the data will continue for many years. The most obvious outcome to date is the availability of a relatively cheap way to get a genetic profile for those that are brave enough. Even this though, is not a definitive depiction of the future for those that take the test. Genes are rarely deterministic, depending on environmental conditions to trigger and support their directives to vulnerable cells and systems. Some companies that administer the tests also supply the putative nutritional safeguards that go along with each potential risk, playing on the fears of the patient and pocketing the rewards as a result. Not that genetic testing is bad; rather that it needs to be kept in perspective. Knowing your genetic risk can be a good thing if the risk is well characterized and there are things you can do to off-set the disease. For most genetic risks, that is not the case. Human physiology in health and disease is fascinating and complicated and inherently unique. Understanding the interactions of genes with each other and the environment in which they operate requires lengthy research and analysis. We should learn to set our expectations. Accumulation of observations is indeed fabulously fast. But translation to, and acceptance of, real benefit will always be, by comparison, painstakingly slow.

Living with our genes

Gene testing is becoming more popular and I expect it will become downright trendy now that Bush has signed a bill to prevent discrimination against folks with dodgy genes. When I say dodgy, I mean potentially dodgy of course. Not all genetic portents truly predict an undesirable future. The environment must also play its part. In talking to a friend from the UK last week, the topic came up around gene testing and the dilemma of insurers and employers who may see a risk the the genetic profile of prospective customers or workers but have limited ways to use that information to politely tell a prospect, no. It sounds unethical to deny insurance coverage or employment, but is it?
Our discussions was colored by the healthcare environment my friend and I are from. I live in the US, he in the UK. He has access to socialized medicine. I do not. I rely on reimbursement for all procedures and medicines from my insurance company. He never sees a medical bill. Both our worlds are governed by codes and formularies. In mine, how my doctors visit is categorized governs how much I will have to pay for services.
He put forward a view that if insurance companies take into account all risk factors including genetic ones, then the greater good will be served by providing less coverage for more risky cases. The genetic profile just helps to fill out the picture and the resulting gaps in coverage then provide an opportunity for novel approaches to insurance to entrepreneurs. In other words, the free market prevails. He has an excellent point and he comes from a country that has a basically fair health system, despite all its shortcomings. It is natural for him to think there is a fair way to deal with genetic profiles without having to resort to policies to protect those with ‘bad genes’. For me, living in the US, it seems as though gene testing provides one more level of categorization that will lead to no reimbursement or unaffordable coverage for many. The codes for risky genes have yet to be inserted to a system that leaves millions of Americans uninsured. Anit-discrimination laws do not endorse irresponsible behavior in the light of risky genes but rather give pause to those who seek to capitalize on the information for financial gain. The laws make us think. For genetic variance, our state of understanding is very immature. Genes and environment interact to place us at risk of disease in ways that are unique to each individual. It will be very difficult to say just what health outcome can be expected of a particular gene profile for many years into the future to come. In the meantime, the anti-discrimination laws will hold overzealous insurers and employers at bay. The ‘defective gene’ label is one that we can ill afford until more is understood about what it means. And boxing us into yet another categorization with a damning code to decide how we pay, is just a little before its time.

To validate or not to validate?

I'm reading some Eckhart Tolle and loving it. It hit me today that there are three basic modes of living. First there is the ego driven life that requiree validation constantly. I used to think that validation was important for happiness and success. I though that some individuals were destined to continually seek for acceptance to fill the void created in their early years from not being vaildated by parents and caregivers. I felt validation of core identity was the key. I now think differently. Validation is still important, especially in the first half of life. We want to be seen to be successful, pretty, competent, 'identified'. After reading Tolle I realize that it is just the ego that needs the validation and will indeed continually seek it. Marketers love the ego. Fashion, smelly candles, clubs, holidays, shoes (my ego loves shoes), houses, all validate the ego and create a sense of belonging through ownership or involvement. Without the ego and its constant need for satisafaction, capitalism would struggle to survive.

The second mode of living is the conscious mode that Tolle talks about. It is akin to 'second level' stages of the Spiral. This mode develops through the second half of life (I am speaking in generalities since all lives evolve at their own pace and some people seem born into conscious existance, while others live through their ego to the bitter end). As the first mode declines, and the ego becomes more observed and therefor emore under control then conscious living takes over. It seems the two oscillate with ego winning at first, and consciousness taking over for the latter half. Perhaps the time the balance shifts from ego to consciousness is what we view as the 'mid-life crisis'. If so, I hope one day we will learn to welcome the crisis, working through and then above it, through to enlightenment. I'd recommend Tolle's books. To me they represent a fundamental truth that I have always known but not always understood.

The third mode of life is familiar to many in the US, and paid my salary for many years. It is the medicated life. This is the life that disturbs me the most, I have nothing against medications for the most part; just last week my mother's life was saved by a high dose intravneous diuretic that was in essence, a miracle cure for the acute condition she found herself in. However, we turn too readily to drugs to calm and soothe, energize and stimulate. We expect to find solace and health in a pill. If enough of us continue to live this way, our culture will hit a very real hurdle in its evolution. However, I do sense a scepticism about medicines that could lead to a more healthy application of them. Hopefully, over time we can become more conscious in the way we diagnose and treat illness, making use of all available therapies from across the traditional and complementary spectrum. I think Tolle has a unique way of expressing the duality that causes us so many problems as we wrestle a demon we often do not even know exists. I wonder if it is most usefully applied to this third mode of life where have become so disconnected from our own healing mechanisms.

Alzheimer's Disease-from bad to worse

I read today that drugs commonly used to treat some Alzheimer's Disease (AD) patients do not do any good, and may even do some harm. The BBC reported on their website that the neuroleptic drugs that are sometimes given to AD patients to control behavior, can also compromise verbal skills in patients with only mild cognitive impairment. These drugs were originally developed to treat psychosis in schizophrenic patients but are often given to elderly patients with dementia because they can control the aggression that comes with the progression of AD. This latter indication is an off-label indication since the FDA has not approved it for such use, nor has it been tested widely in the elderly. Olanzapine (trade name, Zyprexa) made by Lilly) has come under particular fire lately for inappropriate advertising and administration for off-label indications.

In 2004 the Committee on the Safety of Medicines in the UK issued a warning that Zyprexa could cause strokes in patients with dementia and recommended it not be used for that purpose. In 2004 my father died from the effects of Zyprexa while under the care of a nursing home in my home town of Newark, UK.
My father had been deteriorating from the effects of Lewy Body Disease (a type of dementia that has features of AD as well as Parkinson's like shuffling) and was taking Zyprexa daily to control aggression. I remember the day the hospital doctor told me it was his only hope. He would sit on the floor and refuse to get up, strike out occasionally and wander in the streets at night. It was explained to me that Zyprexa was his last chance to retain some some semblance of manageability as his dementia continued to progress. That same doctor told me that he 'was not in there' when he went through a phase of not talking, but of course, his family knew differently. He was there all along, but he just couldn't always show us. After he had been in the nursing home for a couple of years, the doctor decided to increase his dose of Zyprexa. He was too lively it seemed. Not for long. The day nurse increased his dose. The night nurse increased his dose. The result was a fatal overdose. The day he got the double dose, he immediately spike a fever. My mum relayed to me that his face was very flushed and he was silent. He seemed to be in pain and his urine was very dark. He had taken to his bed and could not get up. The research I was doing at the time while at Pfizer led me to the web where my suspicions were confirmed. He was suffering a rare (but is it that rare?) side effect of some anti-psychotic medications, Neuroleptic Malignant Syndrome. The high temperature brought on my the drug caused his muscle tissue to break down giving rise to the tell-tale dark brown urine color of rhabdomyolysis or muscle toxicity. He never got out of bed again and 4 months later, passed away. His medicine records were never found and my mum would not consent to a postmortem so it looked as though he just slipped away from advanced dementia. There are so many things wrong with the picture I just painted but I want to raise one that has nothing to do with the use of anti-psychotics in the elderly and everything to do with how we view dementia in the first place. A new book I am reading called The Myth of Alzheimer's questions our categorization of the disease and suggests that we over-focus on the disease labels and unnecessary treatments, and under focus on the social aspect of caring for our elderly as they progress through old age and is challenges. In his book, Dr Peter Whitehouse suggests that AD is little more than a convenient marketing empire that distracts us from the core issues with the disease which are, that we do not know what causes it, or whether it merely represents a 'normal' aging of the brain that occurs at different times in different people (a bit like some people get aching bones earlier than others perhaps...).
The book makes me wonder about my own experience with a loved one with dementia. The drugs, the quick proclamation that 'he's not in there any more' when he clearly was very much 'in there', and the fear and denial associated with his daily delusions (he was usually happy with his hallucinations, it was us that were not). Perhaps we need to learn to be more gracious with the demented. Perhaps our social systems should be more geared towards support of the elderly rather than condemnation to a disease state that strikes fear into the hearts of all of us. My dad had a good life and retained his character until the end but in a changed form. His 'disease' created another version of himself that was as fascinating as it was sad. He didn't lose himself as much as found a new self. If we had been able to grasp that at the time, we may have been better company for him in his last years.

(Hyper?) Active kids

Children are a delight and a worry. The only time I am completely happy is when they are asleep in bed. And even then I wonder whether the blankets are occluding their breathing and the CO2 giving them brain damage. When my youngest was a baby, I was convinced he was growing asymmetrically. It didn't help that our pediatrician was new to the job and tended to validate all my concerns before referring him to other more experienced doctors who reassured me that he was quite normal every time.

Now they are older (soon-to-be 15, and 12) and they worry me no less. The older one for obvious reasons, but both of them because this is the time in their life when they are developing a sense for what they might want to be when they grow up. It was with great surprise then, when my 12 year old asked me to talk to his teachers about him intending to be a musician when he grows up, and asking for their help in getting his grades up so he could get to college. The music bit was not a surprise-the boy creates new songs every day- but the link to good grades and college was.

I did meet with his teachers to talk about his academic progress (or lack of it in some areas) after his home room teacher suggested I needed to come in. I was nervous, because earlier in the year, the school counselor had called and asked if they could assess my son for attention problems. I said yes, feeling like I would have been a bad mom if I said no. But then when my part of the paperwork came home, I did not fill it out, instead opting to get advice from a friend who is a child psychologist. He suggested that if an investigation was warranted that I go to a professional outside of the school system as they tend to look at all potential issues rather than just ADHD. Good advice and I chose not to follow up with the school assessment at that time.

My son is not unable to focus, or to hold concentration. He is just easily distracted by one or two things; Friends, and the opportunity for an audience. Given his aspirations to be a musician perhaps at least the latter is not such a bad thing.
So, when I entered the room and saw his teachers sitting in waiting I felt some trepidation. I felt for sure, this was it. Time to confront the ADHD issue. But, it didn't go that way. All of his teachers appeared to recognize that they had a talent on their hands. They understood the tragedy of suppressing the spirit in artistic kids, and they offered suggestions to help my son improve his grades without compromising his dreams or his social life. Small organizational tips, and gentle reminders that there us a time and a place for everything now seem to be keeping him on track. How many other kids are so lucky to have teachers like that? How many others would have been pushed into medications rather than viewed as unique spirits on their way to their own special destiny? A 2007 review in the American Journal of Psychiatry found that there is a worldwide prevalence of ADHD/HD of 5.29% and the US is similar. The use of stimulant drugs to treat ADHD is necessary in severe cases but the risk of over-prescribing and mis-use of medications is a concern for parents, teachers and doctors alike. It is estimated that about 1 in 8 children in the US take a stimulant such as Ritalin, or Dexidrine, in order to control their ADD or ADHD.
A Time Magazine article way back in '03 (http://www.time.com/time/magazine/article/0,9171,1101031103-526331,00.html) highlighted the dilemma of having pills that work to focus and calm anxious middle schoolers, versus the unknowns associated with such medical practices, mainly regarding effects of artificially modifying the emotional and behavioral control mechanisms that are still underdeveloped in kids of that age. We don't know much more now about the use of stimulants in kids than we did in 2003. If you learn to cope chemically in those formative years, does it compromise your ability to cope without the chemicals later on? It's a balance between doing well enough to stay in the game (with or without medication) and developing the life skills for a successful adulthood without reliance on those same medications. In 2008, it is emerging that teenagers are abusing stimulants to stay awake longer during crunch time for exams. The pill takers are raising the game. Reminds me of the steroid problems that athletes face. If one does it, the baseline is elevated and if you snooze you lose.
The pharmaceutical trade group PhRMA have suggested that up to 10% of American children suffer from some mental illness. I offer the notion that perhaps we are too eager to classify the considerable angst of teenager-hood as bipolar, ADHD, depression or any number of other maladies that can now be ameliorated with non-street versions of uppers and downers. The FDA also worries. But don't misunderstand me. I am not for or against these therapies, just very strongly in favor of a thoughtful process on a child by child basis before jumping to a label and a drug to fix it.

In the case of my son, I am still open minded regarding a diagnosis for his oddball characteristics. If is has troubles with his peers, or with authority figures, or with himself, that he can't deal with, I will take him in. At the moment, we (his teachers, myself and my son) accept that he has an unusually creative and sociable side that he must reign in at certain times, such as the classroom. They tell me he thinks beyond his years. He is not weird, doesn't need medications, nor therapy, and is doing quite well at school with the gentle nudges and organizational tools we are helping him develop. I am proud of his creativeness and his ambitions to become a professional musician. Luckily, his teachers are too.

Socially networked out

I'm exhausted from all my socializing, most of which I do from this very spot. Face to face with a 17" screen, I chat, play, work, sing (yes-I have sung to my computer and with the wonders of Logic Pro I can make myself sound like Celine Dion on steroids with a mere tap of a key), laugh and even sometimes, cry. I heard yesterday that about 10% of Americans are addicted to the internet and I understand why. The web has it going on.

Rather than talk about what's wrong with that (and there is much), I'm going to talk about the upside. Being connected is a fundamental human need. Being without a community is a bad for your health as giving up smoking is good (Bowling Alone by Robert Putnam--great book). Two days ago a far away friend mentioned how discomforting it had been to be 2 weeks without home internet when his system threw a wobbly. He felt like he'd been missing a friend, he said. Another friend in a far place asked me today if I had figured out what the point of Facebook might be. I had to think, because it wasn't immediately apparent. I have LinkedIn for serious work networking, I have YouTube for a laugh and to keep track of my musically prolific son, Plaxo Pluse for keeping in touch with old friends, and I have zaadz.com for the weird side of me that still believes in fairies. So what is Facebook for? It must be good for something. Sheryl Sandberg, Google's (ex) VP of global online sales defected to Facebook to become COO this week. I pondered my recent experience with it. Why, just in the last three days I was poked by two people I have never met, sent a leprechaun by someone I care a great deal about but rarely see, and turned into a vampire by one of the smartest and successful people I know, who should know better. Oh, and I threw some beads at a couple of folks as part of a bizarre on-line Mardi Gras party that seems to go on forever. Add to that the two games of Scrabble I'm currently playing with remote friends, it seems like Facebook might just be for plain fun.

All of these sites allow me to feel like I am part of the Universe as it moves along in time. I am part of the ebb and flow of my friends' lives in an unobtrusive but slightly voyeuristic way. It feels good to be connected, although I can't fully rationalize the value in a purely logical way. One thing I realized in all my pondering: Facebook does have a purpose. It is to remind us not to take life and ourselves so seriously, that there is no shame is getting of the perch of progress and regressing occasionally. So go on. Sign in and throw a few beads. You'll feel better for it, and so will those that receive.

FDA looks to 'broaden drug use'

According to the New York Time (Feb 16th FDA seeks to broaden the use of drugs) the FDA is considering allowing pharma companies to give doctors articles on off-label use of their approved drugs.  Docs have always been able to use their discretion to prescribe the drugs they see most fitting for a disease whether the drug is approved fro that indication or not.  However, the FDA has come down pretty hard on companies that actively promote their drugs for such off-label uses (A few years ago Pfizer had to pay up almost half a billion dollars for promoting an epilepsy drug for non approved indications that they themselves had data that showed it did not work for). Now the FDA is saying companies can give docs articles that show or suggest utility for indications other than currently approved, in the hope that 'life-saving' treatments can be more easily apparent to docs in deciding what to prescribe for their patients.

Off-label prescribing is usually good for pharma but not always.  A drug for macular degeneration, Genetech's Lucentis, suffered from same-company poaching when the same company's cancer drug Avastin was adopted by retina specialists as a cheaper alternative to Lucentis.  In most other cases off-label prescribing leads to more prescriptions written and higher sales for a given medicine.  If it benefits the patient, what is the problem with off-label prescribing and what the FDA is proposing?  Well, for starters, off-label prescribing is inherently risky.  The drugs in question have not been tested for safety issues in any group apart from the approved-for population and their proposed efficacy also does not have rigorous data behind it.  A second issue with allowing pharma companies to give articles to docs is that the companies can be selective about what they give, choosing to distribute only the supportive articles and not the detractors.   Rarely is data cut and dried and there is usually plenty of evidence to support a contrary view to the one that supports an alternate indication.  A third issue is that pharma companies often sponsor trials to show their drugs are useful for additional diseases. None of these points automatically mean it is unethical for anyone to show a doctor an article on anything that is out there in the public domain.  We know for sure that is is unlikely most docs get much time to go through the literature and develop a balanced view on what is out there.

So, where does this leave the issue?  Here are the 'facts':

1) Drugs often have uses beyond their current approved indication.  

2) Doctors are in a unique position to see their patient as a whole, and to prescribe what they feel is best for each individual

3) Pharma companies are often more aware of off-label experiments that most, and even sponsor a number of them

4) Doctors and health professionals do not have time for a regular detailed review of the literature

5) Pharma usually gains from encouraging off-label drug use 

6) Patients should be able to get access to the best drug for their disease, approved or not

The latter point speaks to an earlier argument where patients are not allowed access to truly potentially life-saving options because the drugs are in trial stage and not approved for anything yet.  If the patients do not fit the trial criteria (set to optimize the chance of success of a drug)  then they cannot get access to their experimental medicines. To my mind, this is where the most action by the FDA is required.  For many, these experimental drugs are a genuine last hope and I believe if patients are willing to assume the risk they should be allowed to take the meds.  

So this brings us to patients and what they are prepared to risk.  Since an off-label indication is risky, then shouldn't the patient also have a say?  I don't believe it is enough to 'educate' the physician with the articles as suggested by the FDA. Shouldn't materials also be provide for the patient?  Perhaps a balanced view of what is known and what is not, and a statement about potential risks acknowledging rigorous studies have not been done?  I think balance is the key for both docs and patients.  Give them the info, sure, but be sure all aspects are represented--then the doc and the patient can have the discussion and make the choice.  Seems obvious to me but I'd be interested in what others think.

Some predictions...

• Targeted medicines for all diseases. Few side effects, few efficacy failures--we get it right first time!
• We understand how to help the body help itself. We fight off disease and destruction every day without realizing it. In the future we will know how we do it and be able to coax our body to heal itself at will
• The era of over dosing on prescriptions drugs is coming to an end. We are beginning to know too much to be fooled by simplistic treatment regimes that pile on one med after another. Holistic, gentler approaches will come into vogue in the next 10 years. In the meantime, there will be a public backlash against high priced medicines that we are told we must take. Anti-infectives will be the exception, and the most lucrative area in the near future for pharma and biotech
  
• Big Pharma is definitely dying. The model cannot withstand the shift to targeted medicines and increased generic use. As we understand our disease states better, we will be better able to create personal medicine approaches using old and/or new meds. There will be less demand for sexy new meds that cost millions. No more big houses for pharma execs and fancy off-site meetings in the sun...:(
  
• Biologics will be seen as a flash in the pan. A red herring. This is a wild suggestion, but it's an intuition. Biologics are fraught with problems and horrendously difficult to make. We thought we understood proteins once before when we were into macromolecules... The future is somewhere else
  

Physiologists-come back-all is forgiven

Google this story.....Diabetes Study Partially Halted After Deaths

Published: February 7, 2008 New York Times

...and you will be amazed. Apparently lowering blood sugar in Type II diabetics (90% of the diabetic population have Type II) increases your chance of dying. It was supposed to be the other way around. This is a quick post so I'll get to the point. Perhaps the physiology of the diabetic patient is fundamentally different to that of a non-diabetic? This is not a radical statement, nor a novel one, but the pharmaceutical profession do tend to think of a diseased individual as a person having 'normal' physiology with an 'abnormal' disease superimposed on it. So, we just add drugs, or drug cocktails, to 'fix' all the abnormal bits (for eg the high sugar, or the high cholesterol). Most drugs are assessed by their effects on receptors and organs rather than whole systems as they go through drug development. They are marketing in the same manner. No wonder we tend to pile up the meds to counter all the deviant aspects of a person's physiology rather than stepping back to assess the overall picture. The 'overall picture' is a scary concept. Modern medicine doesn't give us the tools to assess nor treat it.
In the current age of high profile drug cocktail-related deaths such as the recent passing of Heath Ledger, and Ann Nicole Smith, perhaps it is time for those of us in the health professions to think of how we can begin to see the human as an ever evolving system over the years, that becomes fundamentally changed as we reach the tipping point for various disease states (diabetes is only one--dementia, autoimmune disorders, depression, anxiety etc, etc are others). When we do become diabetic, depressed, etc, our baselines have changed. And, because we are an interconnected mess of tissues and cells, these baselines affect every aspect of our being from our response to drugs to our mental view of the world. We can't just keep throwing on more meds until the blood sugar is low enough, or we feel calm and serene enough to get back to work. It's time we spent more time looking at the heart of our diseases and the dynamic physiology that underpins them; that complex backdrop that determines our unique response to everything that interacts with us, natural or imposed.

Homework

http://www.nytimes.com/2008/01/03/garden/03nooffice.html?pagewanted=1&WT.mc_id=BU-D-I-NYT-MOD-MOD-M013-ROS-0108-L2&WT.mc_ev=click&ei=5087&en=6ddbcb438579327d&ex=1216875600&mkt=BU-D-I-NYT-MOD-MOD-M013-ROS-0108-L2

Apologies for the very long URL but it's a good one from today's New York Times. The article is concerned with the the ups and downs of working at home. This is a topic I can speak with authority on since I've spent over a year now firmly planted in my home office in the back yard. My office, or the 'Little House', sits all by itself about 10 steps from the 'Big House' as me and my dog have come to call the place where we all live. I spend most of my working days in there and have heating, cooling, technology and scented candles. With windows all around, I feel like I am actually in the garden.

So what does this have to do with future health trends? Well, according the NYT article, there are more and more people working from home and a good portion of these folks feel at increased risk of social isolation (obvious) and depression (less obvious). Personally, I have experienced neither in my year at home but then I've always liked being by myself. I do the odd lunch to keep in touch with friends and ex-colleagues, and I network on line like a mad woman. I miss certain old friends of course, but not enough to consider going back to the office environment.

A second issue for homies, is that they have trouble organizing their day without the enforced rules of the corporate office. Now this I identify with. There are some days when I cannot seem to get anything done and others where I work like there is no tomorrow (sometimes, there isn't....deadlines being what they are). However, I do find this work easier than any I have ever had to face in the past. Probably because it is my choice to do it for the most part, and also because I actually enjoy it. The hours in meetings at my previous work places, while neat and well-scheduled, were often tedious and non-productive in a real-world sense. Now, I do feel guilty when I am not working sometimes, perhaps because somebody else did not sanction it. It can be hard to justify a day off, or even an hour off, when there is work to do and no boss to say--go ahead, relax, you deserve it. Such is our conditioning that we feel we must work an 8-hour day no matter what (see 'The 4-hour workweek' by Timothy Ferris-an excellent read on this topic).

The home-office worker has to be disciplined but the self-employed have to play many roles themselves. Deciding how to structure the day is a challenge I did not see coming when I left the corporate office. I actually missed the structure at first. I think I grieved for it a bit. It was like an old friend providing security and easy gratification. If all else failed, I knew I had to be there at x o'clock, ready for the next strategy meeting/performance review/IT meeting/etc/etc. Just being there on time and prepared garnered a sense of achievement that I didn't recognize as such at the time. Now I have to be the meeting organizer, the confidante (no, I'm not schizophrenic and I don't have multiple personalities (although some might beg to differ on the latter), but I do have to talk to myself, if only to get to the truth of what I am feeling), the sanctioner of 'off-time', the patter of the back when things go well, as well as the actual decision maker on what to do. It's a lot to fit into a day.

So back to the future of health. There are some downsides to working at home and the article referenced above articulates them well. I've thought of a couple of others too. What happens if you have a heart attack in your home office and there is no-one to revive you? Worse still, if you live alone, it may be days, nay, weeks, before you are missed! Add that to the depression that can go with isolation, and the stress of having to make your own plans every day-and stick to them- then working at home does come with potential health issues. As more of us do it, will we get better at dealing with them? Support groups for the lonely home worker anyone? Government subsidized work conclaves so people can cheaply rent communal office space to get their social fix a couple of times a week without losing work time? Or maybe the three day weekend (that should surely be just around the corner for an advanced civilization such as ours) will take care of it when it gets here.

In the meantime, I will continue my occasional morning coffee/lunch with friends, and make sure if I'm having any chest pain, that I leave the office and hang out in the front garden until it goes away. Just in case...

Family doctors, or cyber health?

Several friends of mine have, or have had, cancer.  Some of them are freshly diagnosed while others are old hands.  One recently died.  All these friends have something in common, besides their cancer.  They struggle for answers.  What does my diagnosis mean? What should I do about it? Should I take the surgery right away? I feel like I've been hit with a sledgehammer-do I have time to step back and think?  Who is the best doctor for what I've got.  What have I got anyway?

Some of my friends come to me with these questions.  They know I am a net maven, and they know I'm something to do with the medical field, if not an MD.  Many folks can find information, but they have a hard time sifting through it to find what's relevant.  The stories I hear are amazing.  One doctor says one thing, another says something else, and the web tells a whole different story.  With a little context I can often offer some clarity, but it's also a matter of what people are ready to hear.  They know it's not a good situation when they hear the C word, and sometimes they like to take things a step at a time.  Is there room then, in the future, for a better way to help patients make sense of health information, whether it is preventative care, tending to a kid's bruised up knees, or the decisions that need to be made after the big C diagnosis.  Can our questions be shaped in such a way that the answers are more immediately relevant?  Can our data retrieval systems be such that the solutions coming back actually make sense without having to find a friend who is the the trade, so to speak, to help us understand what the doctor and the internet could not? Can we get better answers by just pushing the right buttons?

The answer, I think, is no.  The singularity is near, Ray Kurzweil tells us in a recent book of his. The time when machines become smart enough to replicate themselves in smarter versions that humans themselves.  If that were true then, for these entities, the interpretation of such complex factors as a medical diagnosis in the setting of our own unique contexts would be child's play.  It would be just a matter of engaging the right algorithms and acting on what comes out the other end.  I think Ray is off the mark though.  Machines can only deal will attributes and relationships that we put into them.  They are no good at predicting the future of an action any more than they are any good at feeling an emotion.  It is only through predicting the future that we can act in circumstances that have never been encountered before.  We can't search our memories for this exact moment because it hasn't happened yet.  However, we can search for similar moments and approximate our response based on that.  This requires a prediction of what might happen if we do 'x' so that we can engage the appropriate action for the situation.  This is one of the research topics at the Redwood Institute in California and suggests that artificial intelligence is not so intelligent after all.  At least, not yet.

So, the future of medicine, probably does not include replacing doctors with artificial diagnostic intelligence, and bedside robots at least for the moment.  My cardiologist and I discussed recently the phenomenon of a doctor's intuition.  We agreed it is hard to explain and even harder to teach.  This is an element of medical practice that all those cancer patients I talked about could really use; an empathic doctor who will use his intuition to engage with the patient and work through the data with them to find the truths they seek.  Often, there are gaps. Always, there are uncertainties.  But what patients need most of all at times like these, is a trusted individual to tell them what they need to know.   Someone to validate their fears, and guide them through the options for treatment and beyond.  In other words, an old fashioned family doctor.  

Perhaps the future will see a return to the past with the family doc acting not just as the first person to go to with symptoms, but as a sympathetic infomediary that interprets and guides in the midst of all those specialists. An internet whiz who can seamlessly bob and weave through the paper and the ether to give us the confidence that while we may not know how it's all going to end up, we can make the best of what we've got given what's known.

Mac Magicians

Not exactly the future of health, but it could be.  Who knows when the fingerprint pulse-ox widget will become available and allow us to check our oxygen saturation on our iphone?

They have done it again. The Mac Air was unveiled yesterday and I want one. It is geared for light, wireless working anywhere and everywhere. While not exactly sorcery, it may as well be to me. I don't know what goes on under the keyboard and contrary to my husband who builds his own computers and scoffs at Macs, I don't care. All I know is, I want a light, portable, durable, connected machine and the Air looks like it is it. At almost 2K I'll have to wait though. As if revealing the Air was not enough, I also discovered the latest iphone update today. It lets me customize my home screen among other things, as well as pin my home address to my maps for ready directions anywhere I want to go. The iphone is remarkable. I don't know how anyone will catch up. Then there is the iTunes latest that allows movie rentals for 30 days after which they miraculously disappear to free up hard drive space and make way for the next batch. I love it all. To me it's sorcery and science in perfect synergy

Dem old bones

Shortness is related to arthritis, the latest news tells us. Too tall, or too short, it seems we are at risk of osteoarthritis if we are anything other than average when it comes to height. The reasons are not clear but this news is quite exciting to researchers as there are so few genes for osteoarthritis, whereas there are a great many for height. Careful digging into the genetic and environmental causes of both may shed light on the increased risk. If short people get arthritis, what does this mean from an evolutionary perspective? Often, a genetic disadvantage in this day and age, may have been a significant advantage in years gone by.

I'm short, so I should perhaps be concerned. Or maybe not. I could have a gene test; a gene for Growth Differentiation Factor 5, or GDF5, has been associated with the development of cartilage, and also with arthritis susceptibility in Europeans and Asians. If I have the risk variant, what would I do about it? Nothing, because there is really nothing that can be done. I have no family history, although my son does appear to have somewhat mobile joints. Perhaps I passed a dicky gene on? To understand my genetic risk is becoming easier for bones and lots of other pending problems. Gene testing is relatively cheap and beginning to offer significant information, albeit un-validated for the most part. The HapMap, a complete map of human genetic variation, is about to be released in the journal Nature Genetics (online, Jan 13th 08). For sure, as these types of sweeping tests become more popular, doctors, diagnostics companies and drug companies will have to start coming up with ethical responses to the questions that will arise when folks begin to see they have genes rendering them susceptible to dementia, cancer and the like. How will we deal with the knowledge of the risk, with no preventatives to soothe us while we wait for the inevitable? Dangerous and heady times are ahead. But what an amazing time to be alive, and what a great opportunity for those of a business mind-set.

Welcome to the Future Health Trends Blog

Our health environment is changing as information becomes more available about diseases, treatments and the effects of our own body's characteristics on the effects of both.  There is so much information out there, in fact, that we can get bogged down answering even the simplest of questions when we turn to the internet, the TV or media.  The problem with the ubiquity of information is that not all information is relevant to each one of us, and the trick is to understand what is meaningful in our own context, and what is not.

Science and technology has been quite reductionist for a while. For several centuries in fact.  Now, however, we are recognizing that the power of science and technology can only be increased by integrating with the arts and the humanities. It is at the intersections of art and science that true discoveries are often made. This blog is intended to explore the future of health and medicine from the perspective that integrative approaches to health and wellness are better than linear, discipline based approaches.  We will also report on key developments that stand to improve access and effectiveness of diagnostics and treatments based on the understanding of individual physiological, psychological and socioeconomic characteristics.