Wednesday, June 17, 2009
Friday, June 12, 2009
Wednesday, April 29, 2009
My earlier post The Mirage of "The Cure" reminded me of a book by Abraham Verghese. In My Own Country: A Doctor’s Story of a Town and its People in the age of AIDS he described the mood of the medical community during the early years of AIDS. It was a time of "unreal confidence", and he vividly tells what it was like to be in the medical community when it seemed to know no obstacles.
Here are some passages:
I remember as an intern in 1981 reading a New England Journal of Medicine article with the curious title “Pneumocystis carinii Pneumonia and mucosal Candidiasis in Previously Healthy Homosexual Men—Evidence of a New Acquired Cellular Immunodeficiency.” It described the seminal AIDS cases in Los Angeles. Companion articles described cases in New York and San Francisco. Three things about these reports stayed in my mind: gay men, immune deficiency, and death.
The month the first papers on AIDS came out, the disease became a topic for late-night, idle discussion in the Mountain Home VA and Miracle Center cafeterias. ... We were seeing in our lifetime, so we told ourselves, yet another new disease. And surely, just like Legionnaire’s, Lyme disease, toxic shock—all new diseases—we felt this new disease, this mysterious immune deficiency, would soon be understood and conquered.
Although unexpected new diseases kept cropping up, this had not yet dented the profession’s confidence that they “would soon be understood and conquered.” Why was this so? Because of the enormous progress that had been made, because what was now routine was so amazing. We had progressed, if that’s the right word, to the point where we could treat the person as machinery, we could see the human body as a set of systems that we could control:
To say this was a time of unreal and unparalleled confidence, bordering on conceit, in the Western medical world is to understate things. Only cancer was truly feared, and even that was often curable. When the outcome of treatment was not good, it was because the host was aged, the protoplasm frail, or the patient had presented too late—never because medical science was impotent.
There seemed little that medicine could not do. As a lowly resident, I was inserting Swan-Ganz catheters into the vena cava and the right side of the heart. Meanwhile, the cardiologists were advancing fancier catheters through leg arteries and up the aorta, then using tiny balloons to open clogged coronary arteries or using lasers in Roto-Rooter fashion to ream out the grunge.
Surgeons, like Tom Starzl in Pittsburgh, had made kidney, liver, heart and heart-lung transplantation routine and they were embarking on twelve- to fourteen-hour “cluster operations” where liver, pancreas, duodenum and jejunum were removed en bloc from a donor and transplanted into a patient whose belly, previously riddled with cancer, had now been eviscerated, scooped clean in preparation for this organ bouquet.
Starzl was an icon for that period in medicine, the pre-AIDS days, the frontier days of every-other-night call. My fellow interns and I thought of ourselves as the vaqueros of the fluorescent corridors, riding the high of sleep deprivation, dressed day or night in surgical scrubs, banks of beepers on our belts, our tongues quick with the buzz words that reduced patients to syndromes—”rule out MI,” “impending DTs,” “multiorgan failure.” We strutted around with floppy tourniquets threaded through the buttonholes of our coats, our pockets cluttered with penlights, ECG calipers, stethoscopes, plastic shuffle cards with algorithms and recipes on them. The hemostats lost in the depths of our coat pockets were our multipurpose wrenches and found uses from roach clips to earwax dislodgers. Carried casually in sterile packaging in our top pockets were seven-gauge, seven-inch needles with twelve-inch trails of tubing. We were always ready—should we be first at a Code Blue—to slide needle under collarbone, into the great subclavian vein, and then to feed the serpent tubing down the vena cava in a cathartic ritual that established our mastery over the human body.
With this modern technology at our disposal, no medical problem would resist our efforts for long:
There seemed no reason to believe when AIDS arrived on the scene that we would not transfix it with our divining needles, lyse it with our potions, swallow it and digest it in the great vats of eighties technology.
As I write this, it is difficult to imagine that unreal time, 1983, in the history of AIDS. Not only did we not know what caused AIDS, there was no test to say who did and who did not have the mysterious disease.
The best that doctors across the country could do was to agree on a “definition” to ensure that everyone was talking about the same entity: if one was previously healthy and, for no obvious reason, developed an infection with an organism like pneumocystis or even developed Kaposi’s sarcoma, one had acquired immune deficiency syndrome. AIDS.
It seemed for a while that the confidence was justified, as real progress was indeed achieved:
Towards the end of my fellowship came the exciting news that Gallo and Montagnier (or Montagnier and Gallo depending on whom you believed—this too was part of the excitement: the personalities and the rivalries) had discovered that AIDS was caused by a virus: HIV.
A test to screen blood for HIV was rapidly-developed, and it was confirmed that all those who had AIDS carried the virus in their bodies.
... the mystery of causation had been solved.
Surely, the cure was just around the corner.
Over 25 years later, however, we are still searching ...
Tuesday, April 28, 2009
We are wasting our lives waiting for miracle cures. That’s the sense I get from some recent health news.
Hoping for a cure is one thing. Working towards a cure, that’s understandable. Anyone who suffers from an illness, whether it's just the common cold or something much worse, surely wishes that it will go away and won’t ever happen again. But, recent news is not hope inspiring.
Geneomics: Show Limited Value in Predicting Disease
Recent advances in decoding the genome has led many to predict an age of “personalized medicine”. The notion is that we would soon learn which gene was responsible for which disease. Then, we could give an individual advance warning that he is likely to get a specific disease so he can take appropriate preventive action or plan life accordingly.
Things haven’t worked out that way.
The April 23, 2009 issue of the New England Journal of Medicine has several articles (see here, here and here) reviewing the progress made in understanding the relationships between genes and diseases.
A New York Times story summarized the results: “The era of personal genomic medicine may have to wait. The genetic analysis of common disease is turning out to be a lot more complex than expected.” The scientific method used in the genomic studies turned out to be more successful than expected, but what has been learned is different than what people had hoped. “Unlike the rare diseases caused by a change affecting only one gene, common diseases like cancer and diabetes are caused by a set of several genetic variations in each person.” One of the authors, Dr. David B. Goldstein of Duke University, writes that “In pointing at everything, genetics would point at nothing.”
Basically, except in rare cases, we’re unlikely to find a simple relationship between genes and disease. No magic cures here.
Cancer: Little Progress Towards Cure
Another recent NY Times article – In Long Drive to Cure Cancer, Advances Have Been Elusive – began:
In 1971, flush with the nation’s success in putting a man on the Moon, President Richard M. Nixon announced a new goal. Cancer would be cured by 1976, the bicentennial.
When 1976 came and went, the date for a cure, or at least substantial progress, kept being put off. It was going to happen by 2000, then by 2015.
The article noted that the death rate for cancer has dropped only 5% in the past 45 years, very small compared to declines in death rates for other illnesses such as heart diesease, flu and pneumonia. Progress on prevention has also been “agonizingly slow”.
And yet the popular perception is that various prevention methods (e.g. high-fiber diets) are effective, that early detection will make a big difference in disease progression, and that “miraculous treatments and more in the pipeline could cure you or turn your cancer into a manageable disease.”
The misperceptions stem from the public’s desire to have a miracle to believe in, and the profession’s reluctance to be more frank.
As a doctor who tries to be honest with patients, Dr. [Leonard] Saltz [a colon cancer specialist at Memorial Sloan-Kettering Cancer Center] says he sees the allure of illusions.
“It would be very hard and insensitive to say, ‘All I’ve got is a drug that will cost $10,000 a month and give you an average survival benefit of a month or two,’ ” he said. “The details are very, very tough to deal with.”
The public demand for an immediate, easy cure has also gotten in the way of potential progress — we want the current way to work, and so are unwilling to look at alternatives:
And for all the money poured into cancer research, there has never been enough for innovative studies, the kind that can fundamentally change the way scientists understand cancer or doctors treat it. Such studies are risky, less likely to work than ones that are more incremental. The result is that, with limited money, innovative projects often lose out to more reliably successful projects that aim to tweak treatments, perhaps extending life by only weeks.
Yet again, we are hampered by the illusion that a miracle cure exists and that we’ll get there if keep on the current path.
Seeing the Mirage
Clearly we need to do more than simply waiting, perhaps in vain, for someone to find “the cure”, do more than placing the entire burden of finding ways to improve our health on “the experts”. What else should we do? That’s a topic for other posts. But, for now, not giving in to the mirage is a start.
Monday, April 27, 2009
Sunday, April 26, 2009
Some time ago I went to a talk at my local public library given by Dr. Walter Bortz, a professor of medicine at Stanford University (and many other active roles). He is also the author of many best-selling books including Dare to be 100: 99 Steps to a Long, Healthy Life, Living Longer for Dummies, and Diabetes Danger: What 200 Million Americans at Risk Need to Know.
He likened people’s health and longevity to that of a car, and said there were four key factors: Design, Accidents, Maintenance and Aging.
DESIGN: If a car isn’t well designed or well manufactured it’s going to fall apart quickly no matter what you do. Toyotas seem to last forever whereas the Yugo was derided as not being worth it at any price. For people, design basically means what we inherit in our genes. We have no choice in the matter, but Dr. Bortz noted that our genes influence only about 15% of our health.
ACCIDENTS: These are things that happen to you over which you have little-to-no control. If you car gets driven off a bridge, or some truck rams into it, there’s little your poor car can do about it and it’s “health” will suffer. Similarly for people there are accidents (get hit by lightning, tree falls on you, etc.) and also malignancies (nasty bugs, viruses, bacteria, chemicals, etc.) that you cannot avoid. Accidents used to be the major cause of death in times past, but advances in public health, medicine, and health care mean that today accidents are much more survivable.
MAINTENANCE: For cars this means changing the oil, tuning the engine, replacing worn parts, rotating tires, etc. – do these poorly and you may lower the lifetime of your car substantially. For people this means the food we eat, whether we abuse / overuse / underuse our bodies. Basically how well we take care of ourselves. Dr. Bortz stressed that this is the primary influence on our health & longevity today.
AGING: We’re eventually going to die no matter what we do. Same with our cars, although you could theoretically replace every single part with a new one and still think of it as the same car. But, how well we do maintenance can have a big impact on the rate of aging of our cars and our bodies.
Dr. Bortz is a man on a mission to get a good chunk of the trillions of dollars we spend on health care, mainly devoted to dealing with accidents and aging, to be devoted to maintenance instead.
I think this car analogy can be very useful especially in highlight how much we are unlike cars.
A recent personal example hammered this home. The front doors’ windows and door locks of my car stopped responding to the appropriate buttons. This seemed like a simple problem ... must just be a fuse or a loose wire somewhere! Little did I know. My local mechanic spent a day trying to fix it, taking apart both doors and the central control panel in the process. Things miraculously started working properly, but he had no explanation. A few weeks later the problem returned. This time I took it to the car dealer. They charge a higher rate, but since they should know what they’re doing at least it would get fixed properly. Their mechanic spent half a day, replaced some very expensive parts and charged me a lot of money. Next day the problem reappeared! Back to the car dealer. This time the mechanic and the foreman spent a good part of a day fixing things properly. It turned out that there was a malfunctioning component elsewhere in the car that was causing an electrical noise that in turn has resulted in the problems I was having. Now, my car comes from a firm renowned for its engineering and is that company’s most common model. It is designed to exacting specifications and manufactured in the millions. My car has never experienced anything particularly unusual (no significant accidents), and has generally been maintained on schedule by the dealer’s own service department. And yet they tell me they have never experienced such a problem and (obviously) it took a lot of experimentation and guesswork to figure it out.
If cars can be difficult to diagnose and maintain, what about people? Compared to a car our bodies are far more complex systems and experience much more complex lives. If such a well-designed, well-maintained car can be so difficult to diagnose and fix, is it reasonable to expect simple fixes for what ails our bodies?
Friday, April 3, 2009
And that, sadly, is the underlying issue. The focus on the "glamour diseases" – diabetes, cancer, HIV/AIDS, Parkinsons, etc. – and the competition amongst their advocates seems to keep us from addressing the real issue: the health and well-being of the person.
Thursday, March 26, 2009
"Diabetes Supplies Art" is literally art made using diabetes supplies, with the purpose of educating people about the challenges of diabetes treatment. The result is often powerful and full of emotion, and very creative.
Tuesday, March 24, 2009
iPhone application + website for personal health management
Los Altos, CA - March 25, 2009 - Zume Life (www.zumelife.com) announced today the launch of its personal health management system, targeted at consumers with complex health regimens—those with multiple chronic conditions (diabetes, heart disease, depression, autoimmune diseases, cancer, obesity, etc.)—to help them manage their daily, ongoing self-care tasks by making it easy to remember, record and review those tasks.
Today, we face a global epidemic of chronic disease that can only be addressed by helping people take better care of themselves. Millions of Americans, and many more across the world, are living with chronic conditions that require dozens of health-related activities to be done every day—multiple drugs at different times, keeping track of different symptoms, and paying attention to what they eat and how often they exercise. They have to do this properly and consistently for the rest of their lives.
Not surprisingly, people find this nearly impossible to do. “Non-adherence” is a major problem, impacting not only the health and well-being of those individuals and their families, but also placing an enormous financial burden on society. “People would like to do better,” said Zume Life CEO Rajiv Mehta, “but they can’t just put aside the rest of their activities and responsibilities to focus only on their health. While they of course want better health, what they want most is freedom to live their lives rather than being trapped by the chores of self-care. Our system gives them that freedom, and paves the way to better health.”
The Zume Life system has two components:
- The "Zuri" iPhone application that helps users remember to do various health-related activities and to record those activities
- A website that helps users and their caregivers to review on-going health patterns and the interrelationships amongst different activities, and to respond quickly to changes in health.
Tailored to the needs of each individual, the system provides support for:
- All medications (Rx, OTC, supplements, home remedies)
- Common biometrics (weight, blood pressure, blood glucose, temperature, peak flow, etc)
- Symptoms (anxiety, mood, pain, wheezing, etc.)
- Food journal and basic metrics (calories, carbs, and points)
- Exercise journal
“The medical community has noted for a long time that if we could get people to properly follow their therapeutic regimens, this would have a bigger impact than almost anything else we do,” said Zume Life Chief Operating Officer Priya Kamani MD. “We have spent a significant amount of time understanding the challenges that people living with chronic conditions have and in response have developed tools that help people be more successful in taking care of themselves.”
Since January 2008, a prototype Zume Life system has been used by 200 people, ranging in age from pre-teen to those in their 70s and with dozens of different chronic conditions. Users noted significant improvements in their motivation and confidence in taking care of their own health, ability to stick to their health regimens, and overall health and sense of well-being.
Consumers can sign up for the service at www.zumelife.com. After a one-month free trial, the service is priced at $35 per month or $300 per year, plus $4.99 for the Zuri iPhone application.
About Zume Life
Zume Life's vision is to empower and motivate individuals to become fully and effectively engaged in managing their own health. It is our experience that most people are genuinely interested in being in the best possible health and that a supportive, positive and motivating environment combined with convenient and effective tools can significantly improve self-care efforts. Additionally, we believe that healthcare professionals can more effectively assist their patients if they have a better picture of their patients’ day-to-day health and if their patients have the tools to better implement and adhere to the prescribed regimen.
Zume Life was founded in 2006, and is funded by private investors. For more information, please go to www.zumelife.com.
Rajiv Mehta, Zume Life
Tuesday, March 17, 2009
Tuesday, March 10, 2009
I love this quote from Robert Nerem, a bio-engineering professor at the Georgia Institute of Technology. It comes from a speech he gave as the recipient of the 2008 Founders Award from the National Academy of Engineering. In closing he listed what he calls "The Rules of Life: The Planet Earth School". The last of these rules, #15, is:
Monday, March 9, 2009
In the past couple of years, three books about food have made a big impression on me. One was Michael Pollan's best seller In Defense of Food: An Eater's Manifesto. Another was The Way We Eat: Why Our Food Choices Matter by Peter Singer and Jim Mason. The one that was most surprising however was the unfortunately named The China Study: The Most Comprehensive Study of Nutrition Ever Conducted by Dr. T. Colin Campbell and Thomas M. Campbell II.
Because of that title, I would never have picked the book off a shelf ... I live in the US, not in China, and though I like Chinese food it doesn't make up much of my diet. I only paid attention because a friend who had been battling with cancer told me that it is was a "must read".
Dr. Campbell makes a bold claim, "I propose to do nothing less than redefine what we think of as good nutrition. You need to know the truth about food, and why eating the right way can save your life", and delivers!
The book references a wide range of scientific studies to explain the effects of diet on health. Not just "the China study" of the title, but many, many other studies as well. For many specific diseases, the authors explain the available scientific research and what is known about cause and effect within the body. You learn both that such and such has a high correlation to good health, but also how that can be explained by what we know about the workings of the body.
Reading it, you will learn that so much of what is told about good diets via official government guidelines and accepted medical practice is just plain wrong. For example, you learn that drinking milk is on the whole bad for your bones, and that animal-based protein is not necessary and is in fact harmful. It is not the case that science supports those established medical practices and the "food pyramid" guidelines. Rather those mis-guided instructions are due primarily to political considerations, lazy science, and closed mindedness.
Political considerations are not limited to the lobbying power of the big players in the food business. It also includes the limited-vision of the accepted "good guys" such as academia, the medical community, and even health-oriented advocacy groups (e.g. American Heart Association).
Lazy science is reflected both in researchers generally focusing their efforts on just one variable (making the research and analysis easier), but also in consumers (often journalists) of this research extrapolating the results to situations far beyond the limited confines of the original research.
Closed mindedness comes mostly from people assuming that what they know to be true is in fact true. Dr. Campbell relates how this was true even for himself. He grew up on a farm—cows, pigs, chickens, as well as plants—and "knew" that beef was good for you. One of the first projects in his professional career was to find ways of increasing animal-protein intake in the Philippines. A project he firmly believed in. His faith in this view started to waver as he noted his own research showing that the protein-deficiency health issues were greatest amongst the wealthiest Filipinos, who ate the most meat, and least amongst the poorest, who ate the least amount of meat. That was many decades ago. He's learned a lot since then, and written a fantastic book to help the rest of us.
Michael Pollan summed up his book as "Eat food. Not too much. Mostly plants." The China Study will help you understand why this is a good idea.
Sunday, March 8, 2009
What gets us into trouble
is not what we don't know
It's what we know for sure
that just ain't so
This is the 1st in a series of posts on widely held and pernicious health myths.
There's a lot of talk about improving quality in healthcare. Compared to other industries healthcare lags far behind in adopting the concepts and applying the tools of the quality movement. There is a lot that can be applied, and not just for improving the quality of systems but also for dealing with people.
One of those people-issues is adherence. The problem of poor adherence—the inability of patients to follow their medication regimens accurately and consistently—is widespread and well known. The likely benefits of improved adherence are also well accepted: "Effective ways to help people follow medical treatment would have far larger effects than any treatment itself" (Lancet, 1996).
Given its importance, many studies have been conducted to understand the problem and numerous efforts have been made to solve it. A wonderful overview of medical studies on this topic is Adherence to Medication by Lars Osterberg and Terrence Blaschke. And, many efforts have been made to increase adherence, including more education, easier regimens (e.g. 1 pill a day, rather than 2 or 3), and financial rewards and threats. Nothing seems to make much of a difference.
At first glance, it seems absurd that adherence is so poor. After all, how hard can it really be to take a pill on a regular schedule? Even self-injections (such as for diabetics), though unpleasant, are not especially difficult.
This has led to the myth: people don't adhere because they don't want to; people don't care about their health.
The Red Bead Experiment
Dr. Edward Deming, one of the founders of the quality improvement, used the "Red Bead Experiment" to teach a key point about quality. This experiment is really a performance piece, a skit.
The cast: three workers, a foreman, and a quality inspector
The situation: a bin is filled with beads, of which 80% of are black and 20% are red. The workers use a special paddle to collect beads from the bin, and place these beads in a second bin. The quality of the workers' performance is judged by the percentage of black beads versus red beads in the second bin. A higher percentage being better quality.
The action: foreman tells workers what is expected. Workers transfer one paddle of beads. Quality inspector determines that the second bin has roughly 80% black beads. Foreman fumes and exhorts workers to do better. Workers do their job again, quality inspector checks again, and again the result is about 80%. Foreman is livid, yells at, threatens, demands better performance. Workers try again, quality inspector checks again, 80% again.
The lesson: the workers are limited by the tools at their disposal. There is simply no way to get a higher percentage of black beads out of the first bin with the given paddle. The problem is not one of worker competence or motivation, but of capability. In this case, as in many others, capability must be improved through better tools and processes.
The situation with adherence is much the same. The problem is not simply one of poor knowledge or desire—even smart, motivated people have poor adherence. It is in fact a problem of capability.
It is true that each particular activity in a health regimen—taking a pill; checking and recording weight; recording lunch in a food journal; noting an event of pain or nausea—is relatively easy to do. But, if you have 20, 30, 40 or more such activities spread throughout each day, as is common for people with chronic illnesses, it is difficult to do them properly and consistently every day, forever. If you also have a normal, busy life, with the activities and responsibilities of family, work and society, it is in fact extremely difficult. This is why adherence is so poor! It's almost impossible to be properly adherent. At least without better tools.
Quite simply, people need help remembering all of their scheduled health activities and need an easier way to keep track of all them. People need tools or services to make remembering and recording much, much easier than it is today.
To significantly improve adherence, we must discard the myth of irresponsible patients, and take on the challenge of developing tools that help people. We've got to give those workers better paddles if we want fewer red beads.