Archive for the 'Cancer' Category


Cancer costs breaking the bank?

Recent figures compiled by the Kaiser Foundation’s Medical News from a number of sources highlight how much the cost of cancer treatment has jumped in the last decade or so.

USA Today: “The cost of cancer treatment is ‘skyrocketing’ — both for individual patients and the nation, a new analysis shows. From 1990 to 2008, spending on cancer care soared to more than $90 billion from $27 billion. The increase was driven by the rising costs of sophisticated new drugs, robotic surgeries and radiation techniques, as well as the growing number of patients who are eligible to take them, says Peter Bach of New York’s Memorial Sloan-Kettering Cancer Cancer, co-author of an analysis in today’s Journal of the American Medical Association.

HealthDay News: “New chemotherapy agents for metastatic colon cancer improve patient survival but are costly, says a new study. Researchers at Emory University in Atlanta analyzed data from 4,665 patients, aged 66 and older, diagnosed with metastatic colon cancer between 1995 and 2005. Compared to those who received older chemotherapy agents, patients who received one or more of the six chemotherapy agents approved in the United States between 1996 and 2004 lived an average of 6.8 months longer. That increase in survival was associated with a lifetime cost increase of $37,100, which equates to $66,200 per year of life gained.”

As I’ve said before, one of the big surprises of my career in cancer public health was that cost would become as big a barrier to achieving reduction in cancer mortality as some of the characteristics of the disease itself. Between the early 1970s and maybe 2000 the cancer  control community never talked about cost. The advocacy organization I worked for kept focused on the rather idealistic goal of finding the cures for cancer and making them available regardless of the expense. That wasn’t seen as our concern.

Then the disparities in survival rates among ethnic groups began to show up, an indicator that is pretty closely associated with income. After that, the really expensive “targeted therapies” started to come out of the biotechnology companies. The shockingly high cost of rounds of treatment with the highly engineered molecules designed to disrupt specific cell growth “pathways” in cancer cells was a jaw-dropper. The first impulse was to condemn the biotech companies for greedy profiteering. I happened to be familiar with some of the main companies in the SF Bay Area, so I heard the other side of the story from them. I realized that it is not at all easy or cheap to pursue that way of dealing with cancer. I think we have to look at the drugs out there now as experimental drugs, almost research. There may be reason to hope that the technology for this will improve and drop in cost over time…but I wouldn’t bet the farm on it.

In the last year or so that I worked in the cancer community I began to say that — as an advocacy organization — we had a responsibility not only to push for progress on the disease but to develop recommendations as well for how to do it that took into consideration real-world issues like the overall cost. I doubt that many advocacy organizations in health have costed-out their goals in society-wide economic terms. I’m hoping that the rancor of the health insurance reform debate that is going on is also an eye-opener for nonprofit health organizations. Advocacy organizations tend to get tunnel vision. They need to step back and look at where their cause fits in the bigger picture of all the other needs.


The family genes

I’ve written several posts about how there’s been a lot of criticism this year of the meager results of gene sequencing in finding therapies for diseases. The genetic keys to diseases have proven elusive to the point there has been discouragement in the field. But there’s perhaps a more positive note in today’s NY Times about two studies being published in journals on Friday. For the last decade the operating assumption of genetics and disease is that common diseases like cancer come from common mutations in genes. But a lot of tests on the connection between genetic mutations commonly seen and common diseases was not strong. Instead the conclusion has been emerging that diseases are really linked to rare mutations. So all those news headlines you’ve seen over the last 10 years of so that declare “gene for depression found” were wrong. It’s not that simple.

For three diseases — Charcot-Marie-Tooth disease, Miller syndrome and ciliary dyskinesia — it turns out that the genetic inheritance comes from more obscure genetic changes by way of Mendelian family inheritance. The studies sequenced the whole genomes of not only the children with expressions of the disease but the parents as well. So they got what you might call the whole-family genome. Identifying diseases that manifest differently depending on the mix of genes coming from mom and dad means that the genomes of the whole troop might be needed.

Fortunately the cost of doing a whole genome is dropping, fast. Complete Genomics of Mountain View, Calif., did the genomes in one of the studies at $25,000 each. That’s a whole lot better than the $3 billion for the first genome ten years ago. They’re promising the $10,000 genome to be followed by the $5,000 genome. Remember, the holy grail is $1,000.

I said in my previous post about the 21st century medical model that our personal health record will need to contain our whole genome. This suggests that linking the genomes of the rest of the family will make the assessments of lifetime disease risk a lot better.

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Health paradigm shift needed for the 21st C, part 1

The Society for Participatory Medicine recently asked its members (I’m one; it’s open to the public) what they wanted from the society. The request prodded me to think about what might be undertaken to advance “participatory medicine” or “health 2.0” which are similar if not identical concepts. Others might be better at identifying distinctions.

The purpose of the Society for Participatory Medicine is: “To accelerate change in the culture of healthcare to a more participatory model, through leadership, advocacy, information and tools.” I think it’s fair to say “participation” means a more even role between doctors and patients in making decisions in medical situations. If you go back to my parent’s generation (mid-twentieth century) typically doctors held the information, authority, and decision making power in virtually all medical situations. People didn’t expect to need to know much because, if you got sick, you went to the doctor and he — typically, he — told you what was wrong, what he’d do about it, wrote the prescriptions, and sent you to the hospital if necessary. If you lived in that era you know that generation gratefully accepted the doctor’s direction and didn’t ask many questions. The TV show Marcus Welby, MD, dramatized the medicine of the time.

But, as I described in an earlier post, a portion of the population was not satisfied with the situation and began to question established practices. This was especially true of women not too happy with male-dominated gynecology. In the 1970s, as I recall, emphasis on “informed consent” began to grow. When I went to work in cancer public health in the early ’70s it was shocking to learn that some doctors did not tell some of their patients they had cancer because the physicians judged the patient couldn’t take the shock. The patient participation movement has really accelerated since the internet broke the dam on medical information. The public has gotten much freer access to information from sources other than their personal physicians, which, in may cases, wasn’t much.

That’s the past, the 20th century model. Where can we go from here? Organizations are pushing the envelope, but I’d like to entertain a few ideas for the 21st century that would shift health and medicine in a more radical way.

In earlier times much of health care was the domain of women: an extension of their maternal, nurturing role in the family. The late 19th and the 20th centuries saw the rise of “scientific” medicine. (For an excellent history get hold of sociologist Paul Starr’s, The Social Transformation of American Medicine: The rise of a sovereign profession and the making of a vast industry. The title alone says a lot.)  The complexity and volume of medical knowledge as well as the financial advantage of professional exclusivity eventually resulted in the consolidation of medicine into the system of medical education, licensing, legal authority for therapeutic practices, and self-policing that dominates today. And the swelling of a huge medical industry focused almost exclusively of physicians as the kingpins and market managers reinforced the doctor-centered system. The responsibility for learning and applying medical knowledge placed doctors in a paternalistic position while patients remained in a passive, unschooled position.

I would not challenge the notion that medicine has made great progress under the current system, nor that the trend to super-specialization of medical knowledge will continue. But I have to ask: Should relative passivity and health ignorance of the public and inability to make health judgments remain our aspiration going forward? Are we not capable of knowing much more, of participating more fully in  effective health behavior? That includes accepting the power and responsibility for our own wellbeing. In the past when information was more difficult to distribute relatively low health literacy might have been more understandable and acceptable, but surely we can do better in the future.

My position is that we have already more powerful knowledge tools than even a couple of decades ago and those tools are growing in capability as we speak. There are seeds of a potential to put individuals in a much improved position if we are willing to build systemic support and institutions that augment our abilities as much as the institutional infrastructure that supports the medical profession. It is possible if we have the will to put much greater innovation into it. I believe we can up our game as “patients” — the noun we have accepted — and relate to physicians and scientific/medical institutions in a more capable way.

This is not just some power grab. It seems to me taking charge of our health is not only possible, it is essential. The pathetic political struggle currently going on around “health reform” in the US shows how powerless we’ve allowed ourselves to become. While various interests use politicians as sock-puppets to stage a drama about the future of medicine, we citizens have become primarily ineffective, frustrated spectators. But I hope many folks have learned that we cannot continue to let our most precious possessions — our health and that of our family — remain in the hands of others. And we’ve learned our financial wellbeing is intimately tied to our health status. Serious disease has too often become a financial catastrophe aw well.

Well, I’ve spent a lot of words on the history and context behind what I think we ought to consider for a health promoting environment for the future. In the next post I’ll get down to grinding out the main points.

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feel good, look good, and live forever!

I spent almost all day yesterday listening to the health care reform summit. It triggered some recdollections.

Years ago — was it 15 or 20? — I attended a couple of conferences at Berkeley about managed care, the solution du jour for relentlessly rising health care expenditures. On one panel was Leonard Schaeffer, former president and CEO of WellPoint. (I emphasize “former” to insulate him from the heat the company has taken recently for double-digit premium increases to some customers.) He mentioned that he was often asked at meetings, “What to people want?” with respect to healthcare. His standard reply was: “They want to feel good, to look good, and to live forever.”

He said this only partly in jest. As the CEO of a major payer company he had seen that there was heavy demand by customers to pay not only for treatments alleviating physical ailments but also for treatment to relieve their distress, to make them look more like they thought they should, and to forestall the ravages of age and the ultimate insult, death. The boundaries of the three categories were so ill-defined that it was possible to expand what people wanted reimbursement for indefinitely. This resulted in the administrators dilemma: satisfying the customer’s expectations without utterly exhausting the bank.

Apparently not much has changed. Our expectations for medical relief remain largely unbounded. Perhaps it’s because after WWII we came to expect medical miracles: antibiotics that knocked down infections, vaccines that eliminated polio and communicable diseases, surgery that seemingly made anything possible. I recall watching open heart surgery on fuzzy black and white nationwide TV broadcasts because it was such an astonishing development. After that we sent men to the moon.

When I went to work in the cancer field we had an organizational slogan: “We want to wipe out cancer in your lifetime.” “Wipe out” as in totally eradicate. Seriously! It wasn’t a disingenuous promise; it only reflected the limits of what we knew about the complexity of the disease at the time. People in the cancer field had to let that notion go by the wayside as we began to see that terms like “cure” and “eliminate” were perhaps over-statements when dealing with a disease that stemmed from malfunctions of the most basic biological processes of living things.

The aim of much of the cancer community today is to shift more cancer cases into chronic conditions (as opposed to acute, lethal episodes). Well, that’s progress and perhaps an inevitable step in greater mastery of the disease; but one of the most serious problems we have in health care today is the rising cost of chronic diseases. A study published in Health Affairs a week ago indicated that half of the increase in Medicare spending 1997-2006 was due to increases in prevalence of cases of 10 diseases or to increased cost of treating cases. Cancer isn’t even in the top 5 of the chronic disease list…yet.  One of the biggest surprises of my career was that the financial barriers to state-of-the-art treatment would become a challenge nearly as serious as the intricacy of the disease itself.

We have a difficult time in America discussing pragmatic matters like to cost of protracted care in the same conversation with the good of “saving lives.” Extending life is taken as an unalloyed good. You can become a pariah for mixing the two (i.e., examining comparative effectiveness becomes “death panels” or “pulling the plug on grandma”). I don’t know how many times over the years I’ve listened to well-meaning people advocate efforts requiring a lot of resources with the argument that, “If we can save just one life it will be worth it.” Have I just become too callous when I react: “Uhm…maybe some good can be  done putting the resources elsewhere”? In my entire 40 years in public health I never heard a serious discussion about the unintended or down-side effects of doing whatever it takes to retard illness.

But it’s not a discussion that can be avoided much longer. During the health care debate yesterday everybody seemed to agree on a couple of things: 1) we needed reform for humanitarian reasons, and 2) the continued relentless rise in costs will bankrupt us. One of the Republican senators said something like (I’m paraphrasing), “In a perfect world we’d want everybody to have everything, but we can’t afford this.” I’m a lifelong, unrepentant liberal, but I thought that was a pretty straight statement, one that resonated with me. The truth of  that specific assertion can be argued either way, but it is a matter we have to address. It’s bigger than just the price of the the current health fix. We need to have some frank talk about allocating our less than infinite resources for many benefits that might be achieved. I’m hoping that the baby boomers — of which I’m one — currently heading into the nexus of this issue can bring forth some of the brashness with which we’ve talked about many things in our time (drugs, sex and rock ‘n roll, etc.) and break down the taboo about discussing the realities of life, death, and the price of peanuts.

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Using a couple of self-monitoring tools

I’ve mentioned before that I’m experimenting with e-tools to help me stay on track with my health goals. I’m also doing it to be able to comment on the emerging fields of personal health records and m-health (mobile health). Today I’ll be commenting on an iPhone app I use all the time to track my walking — iTreadmill — and a free graphing program I found about yesterday thanks to @accarmichael  — Tableau Public.

iTreadmill is a popular pedometer using the accelerometer in the iPhone. The app allows the recording of pace and time during a walk or run and calculates other measures.

  • Average Pace (pace over entire walk/run)
  • Average Speed
  • Calories burned
  • Distance
  • Pace (current pace, pace over past 30 secs)
  • Speed (current speed)
  • Step Count
  • Strike Rate (step rate, in steps/min)

I think iTreadmill does a good job recording these parameters, at least sufficient for my needs. They claim to have proprietary technology (trademarked PocketStep) that is supposed to enable the device to measure your movements whether your iPhone is in your pocket, clipped to your belt, or held in your hand. The stride parameter can be adjusted to fit with your stride. The app senses when you stop at, say, a stoplight and detects when you’re moving again so the elapsed time adjusts for interruptions. Pretty much everything else is calculated off your number of steps and time.

The data for each occasion can be stored so you can see your history. The latest version allows you to graph distance, steps, calories burned, and time over the past week, 30, 90 or 180 days. You can export the history by emailing the history file to yourself.

That’s a sore point with me. The FAQ says you can get a “well formatted” table from the email by copying it into a spreadsheet. But all the data from each event is just a string of characters with variable spaces between data elements. It isn’t comma-delimited so you can’t easily separate the data into fields for calculations. I tried various search-and-replace strategies to break it into separate fields but gave it up as too time consuming to be worthwhile. I’ve twice sent emails to iTreadmill asking for help with data formatting and suggesting they build in a better export format, but I’ve gotten no reply or results so far. I ended up manually re-keying my data from iTreadmill into OpenOffice spreadsheet: not my idea of how to facilitate better health behavior.

Indeed, I’m wondering if poor responsiveness isn’t pretty standard for the apps business. I’ve gotta think many of the 100,000 apps for the iPhone are done by one or two developers working out of their mom’s basement. I suspect limited support for technology is going to plague the e-health, m-health movement for some time to come.

That takes me to the next tool: Tableau Public. For me an essential quality of supporting my health program is being able to gather data with a minimum of fuss, store it, and manipulate it with ease. However, the overriding characteristic of the app world — as has been the case with IT for decades — is fragmentation and lack of common standards by which data from a variety of sources can be conveniently combined into something satisfactory. My goal is to export data from the apps I use, store it as a database (with or withyout the help of HealthVault or Google Health) and visualize it in a way that tells me how I’m doing. Since I’d manually re-keyed my iTreadmil ldata I was pleased to learn a versatile, sharable program for visualization has become available. I figured it was an omen to begin shareing my data on this blog, limited as it is.

I started only a couple of days ago with Tableau. It’s a poweful tool that’ll take me some time to master. You need to download a free desktop program. With it you open your spreadsheet or database from within Tableau, and it interprets your sheet to do a lot of the work of getting it ready for display. The resulting display files are stored “in the cloud” on Tableau’s servers. But the site sets the graphics up for embedding into various web apps such as blogs. I’ll be gathering more data, and it appears that Tableau may be a platform for integrating data into a coherent story. So, such as it is, here’s my graph for walking in January and February.

The distance walked is up and down, but when I put in the trend line (dashed line) at least it’s up. That’s encouraging!

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Health 2.0: four decades of experience

As I’ve posted before, I’m interested in Health 2.0. I say that from the perspective of someone with nearly 40 years of experience in social science and cancer public health. I hope my long-term perspective can add something to the discussion of this interesting trend, especially the recent discussion kicked off by the Susannah Fox and the infamous “Darthmed” concerning the value of Health 2.0.

If you’ll indulge me a little I’d like to step back to when I studied sociology in the late 1960s. The conventional methodology of sociology was survey research. Surveys as a social science tool go back to the 1940s, and many of the field thought we knew enough to reduce prejudice, poverty, crime and other social ills. I was in a PhD program in sociology and fell in with some rennegrade sociologists who were skeptical. They maintained surveys were not a sound basis for verifiable “scientific” sociology. They argued that the data had too many poorly understood variables in linguistics, scales that were not consistent with statistical mathematics, and data gathering interaction effects to claim it was a verifiable body of knowledge. Also efforts to apply sociology wasn’t getting much in the way of results. I ended up dropping out of the degree program because I realized we didn’t know enough about the platform — about consciousness, brain function, semantics, and behavior drivers — to have a solid scientific theory of human behavior.

I went to work in local public health for a couple years and then entered a school of public health to get an MPH in health education. I remember having debates about the ethics of using what some students though was such powerful behavior change technology that we needed to have rules for using it. You’d think we were talking about nuclear energy! I had to laugh and say, “Look, a year after you get out of here you’ll be willing to hit people over the head with a two-by-four to get them to change their health behavior!” I’d already gotten some experience with how difficult “good” change could be to produce.

When I graduated I eventually went to work for a nationwide cancer organization just as the first smoking cessation programs were being developed. Techniques of education and group support were being used to encourage people to give up cigarettes. It seemed simple: give rational people solid infomartion about how bad cigarettes were for them and they’d be motivated to give them up. It turned out not to be so simple. After years of effort and tweaks to programs it became clear that, as an old friend from Mississippi told me, “the juice ain’t worth the squeezin'”. It became clear we weren’t going to solve the smoking problem one person at a time. Because “activism” in the 1960s and ’70s was associated with confrontational marches in the streets protesting the war in Vietnam, most nonprofit organizations wouldn’t touch anything political like “advocacy” as we know it. Finally, however, some militants began to articulate “non-smoker‘s rights”. Before, the social norm was that smokers had a “right” to smoke in public and it was rude to ask them not to. Eventually the first excise tax on cigarettes was passed in California to increase their cost. Jacking up the price began to get behavior change. The social context began to change as well. People began to recognize that smoke hurt not only the smoker but anybody around, and non-smokers had a right to protest. Eventually higher taxes and laws to restrict smoking in public were passed across the country. It took a couple of decades but the social perception of smoking changed from accepting to negative and mass behavior change began to come about. When I look back over about 35 years of smoking wars I’m kind of amazed that there has been as much change. Because it took so long it seemed for years like nothing was happening. The key, at least for smoking, was monetary disencentives and– after perceptions changed — restrictive laws. So what lessons am I suggesting?

  • Individual change is difficult to get, especially if the society doesn’t have attitudes that reinforce the change.
  • You need to work on societal attitudes and even laws that may positively or negativel sanction the problem you’re trying to solve. Billions will be spent by commercial interests to maintain the behavior.
  • It takes a long time to achieve much change because there’s resistance on the individual, group, and economic levels.
  • Giving citizens more power and authority over their health today is part of a long trend. Another quick example: in the1970s the Women’s Health Collective wrote a book called Our Bodies, Ourselves because women were dissatisfied about how male gynecologists were treating them. It was a signature piece of the feminist movement that produced real change. I think “our bodies, ourselves” is a good slogan for all of us. To my mind Health 2.0 is another step in this tradition.
  • Health 2.0 is oriented to a lot of technology. By itself technology will not produce much change, but over time it can become a great platform to facilitate communication and information but only once social perceptions and attitudes change.

The technology of Health 2.0 is still primitive. It’s mainly, as far as I can see, preliminary, disconnected equipment and software. It needs to mature into an integrated system that works seamlessly for people, has supporting institutions at all levels, has just-in-time information at the user’s fingertips, and is premised on a model where the person is in charge, not the doctor-institutions we’ve adopted for the last couple of centuries. Health behavior change has never been easy. There’s nothing new in that situation. Health 2.0 fans need to keep moving ahead as early adopters and enthusiasts. But really visible results are not likelhy to emerge for years. It may take a new generation to see widespread adoption of someting that would be a real paradigm change. You’ve got to have patience and understand that all this will be in constant evolution. Whatever behavior you’re looking for needs to be well interlocked with complementary systems.

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Taking the measure of healthcare “elephant in the room”

I called this blog The Vortex because it seems to me we’re in the midst of some really big forces that’ll send us spinning. One of those — here in the US and elsewhere — is demographics. Specifically, the denoument of the Baby Boom generation — of which I am a member — is going to cause perhaps even more turbulence than our advent.

I seldom read George Will’s column in the WashPo because I almost never agree with his perspective on things, but the one he published yesterday brings up the issue of the cost of care of the elderly and its impact in the next couple of decades. I think the situation is of great concern even if I don’t agree with Will’s conclusions about what to do.

The column quotes data about the increase cost of care with age from “Forecasting the cost of US Healthcare” in  the American Enterprise Institute’s newsletter.  The author, Robert Fogel, cites what I think is pretty compelling data about the cost of the end-of-life and, by implication, the possible total cost of the expiration of my generation.

Figure 1

…In this figure, the burden of per capita healthcare costs, which is based on U.S. data, is standardized at 100 for ages 50–54. Figure 1 shows that the financial burden of healthcare per capita rises slowly in the 50s, accelerates in the 60s, accelerates again in the 70s, and accelerates even more rapidly after the mid-80s. The financial per capita burden at age 85 and older is nearly six times as high as the burden at ages 50–54. Notice that the financial burden of healthcare for ages 85 and older is over 75 percent higher per capita than at ages 75–79. However, the physiological prevalence rates (number of conditions per person) is roughly constant at ages 80 and over.

Costs rise, even though the number of conditions (comorbidities) per person remains constant, because the severity of the conditions increases or because the cost of preventing further deterioration (or even partially reversing deterioration) increases with age. It should be kept in mind that standard prevalence rates merely count the number of conditions, neglecting both the increasing physiological deterioration with age and the rising cost of treatment per condition.

Mr. Fogel goes on to discuss various ways the curve could play out over the next couple of decades and ends with what I think is an amazingly optimistic forecast that rising US incomes is going to inspire greater use of biotechnology that results in longer life, fewer chronic conditions and — by some calculus unclear to me — less than devastating total health care cost. In other words, not to worry about the hockey-stick graphs of huge long-term costs, and healthcare is a great business to be in. Read it for yourself and see what conclusion you reach.

This information is cited by George Will as part of a point I think is worth considering. The health care data sets up a contrast between the health care expenditures ahead for the US versus the very large expenditures being made for education in China as a stride toward having by the world’s largest economy by 2040. Will cites another article by Fogel in Foreign Policy titled: “$123,000,000,000,000*” — Fogel’s estimate of the total GDP of China in 2040. That’s a number intended to rock your world that will put China at 40% of world GDP while the US produces only 14%. So China replaces the US as the world’s economic hegemon less than 30 years from now.

The idea doesn’t make me shudder as badly as it would some other poeple, but I think the conundrum identified is valid: how is the US to allocate it’s resources? How much is going to be allocated to health care for us Baby Boomers versus how much is to be allocated to development of the next generations in a highly competitive world? That dilemma faces indivicual families as well. If grandma doesn’t have the money for things not covered by Medicare like long-term-care (which can run thousands of dollars per month), are you doing to wipe out the kids’ college funds?

During the recent health care reform debate calls for evidence-based treatment or comparative effectiveness were greeted by the demagogic  charge of “death panels.” Nevertheless, decisions about resources will be made, even if they’re only the path of least confrontation. This elephant-in-the-room isn’t going away, and it’s big.

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