Medical Controversy: Gender Bias in Medicine

Yup. You read it right. I'm going to cover gender bias in medicine. Don't worry about me I'm wearing my asbestos outfit. Even so... hang on. This is not going to be a short post and it may occasionally sound like a rant.

Before I begin I'll start with a disclaimer. I have an unavoidable bias on this topic. You see I'm male. I thought I'd better get that out of the way before I start. Full disclosure is important after all.

In case you think this will just be a review of the literature... you're only partially right. I'll also explain my view on gender-bias in medicine and list for you what I wish could happen to further the discussion in a sane and sensible manner. So let me give you my position on gender-bias in medicine before I get into the thick of things.

To the question "Is there gender bias in medicine?" my answer is "No and Yes - in that order". And that's a firm answer which isn't at all indecisive. Don't believe me? I'll explain later.

I've worked my entire career in healthcare. First in hospital computer departments and now for a regional digital imaging repository. I'm not a clinician nor do I have any medical training. I work with computers, systems, software, and users. Even though I have no formal medical training there have been occasions over time where people start telling me their theories about healthcare and medicine as soon as they learn I work in healthcare.

One topic that bubbles to the surface every once in a while is how the medical community isn't serving the best interests of women and gives preferencial and better treatment to men. When the topic would get raised I had a decision to make.

You see if the conversation was about specifics and based on some new study I didn't mind participating at all. If someone just wanted to make a small point or just make small talk I'd be nice and polite. When the blanket accusations and sweeping statements started appearing I had to decide how polite to be.

Should I be quiet and nod quietly? Bite my tongue? Politely ask questions to find out how much the other person actually knows about the subject? Or start asking pointed questions and bring out the heavy guns of evidence to shoot down an endlessly repeated list of baseless and disproven claims?

Let me be clear. I don't believe that all claims of bias are baseless or without merit. What would get me going is when a person would go from "I read in the paper that..." to "...and that's why women are suffering and not getting adequate care..." to "...women are still treated like second class citizens." all in one breath.

 This was usually followed by one or more of these:

• women are underrepresented in medical studies
• women were (or are) not allowed in clinical drug trials
• men are getting more surgical procedures than women
• men get more medical care than women
• women get fewer diagnostic tests and procedures than men
• medical technology is developed for men first

All these are vague accusations that people, men and women, make against medicine and medical research. I've pushed a few people over the years and asked how they know these things and what convinces them that they're true. One person in particular tried to make me feel inadequate and stupid since I didn't just 'know' that this is the way the world is. Apparently having coherent arguments to back up one's claims wasn't that important. He felt that if I didn't agree with him that there was a problem then I was a perfect example of how the medical community looks at women.

Did I mention I'm not part of the medical community?

Plus trying to make me feel inadequate because I didn't 'know' these truths didn't work. Usually I tried to be somewhat polite but I did push back quite hard in that particular case.

It's not just the general wisdom that tells us repeatedly that women are not being treated as well as they can be by the medical establishment. Just recently there were three op-eds in the journal Nature that were summarized in a press release that made the rounds. One place the press release landed was at The Institute for Women's Health Research at Northwestern University. Dramatic reading for a press release. Nature magazine wants you to log in or pay to read the op-eds... so for most of us the press release is all we're going to get. Give it a read. It won't take long. It's just a press release.

The Nature op-eds aside I've noticed that the trend seems to be changing. There are less outright claims of sweeping bias in the media. The press coverage tends to be very specific now. If there is a study that shows some bias against women then it gets written about. The article is filled with the usual "it may be a subconscious bias but it still exists" type of wording. There is usually a subtle underlying assumption that this is just more of the same and shouldn't come as too much of a surprise. Often there is some wording to the that says "this just shows how much progress still needs to be made". The articles start specific but then subtly reinforce the notion that there is a large underlying problem.

Notice that we don't seem to hear about studies that show a lack of bias against women. Who's going to read those? If someone finds that women are treated as well as possible will I read it in the paper?

An example of this type of article comes from closer to home than the journal Nature. The Globe and Mail has a perfect recent example with Men twice as likely to get knee surgery. It's an article that covers research on gender bias. The research was based on checking on only 29 orthopedic surgeons and 38 family doctors (of which only 12 were women) by sending fake patients of both genders and seeing if knee surgery was recommended. A small study with a small sample size gets a write up in the Life section of the Globe and Mail. I'd be much more interested if and when there is a bigger and more controlled follow up study myself.

On those few occasions where I started to take people to task and ask them how they 'knew' women were not being treated well in medicine I had an ace up my sleeve. I had counter arguments and challenges because of an article that appeared in the Atlantic magazine back in the summer of 1994. The Sex-Bias Myth in Medicine by Dr. Andrew G. Kadar took me by surprise when I first read it.

If you had asked me about sex-bias before I read Dr. Kadar's article I would have blindly agreed with the common wisdom. Of course women are mistreated by modern medicine. It's simple and obvious. Everyone says they are mistreated so it has to be. Right?

Wrong. Potentially very wrong. Don't believe me? Go read Dr. Kadar's article. Go on. I'll wait.

Dr. Kadar made me think about the assumption that women are short changed by the medical community. He did so by first presenting the accusations and the prevailing common wisdom. Taken as a whole they are damning. To quote Dr. Kadar:

Discrimination on such a large scale cries out for restitution--if the charges are true.

He then looks at each accusation and they are all found wanting. From discrimination in the number of diagnostic tests, to the number of referrals for bypass surgery, to the question of women in heart disease research, to whole new surgical techniques that were developed for women first, to the development of ultrasound imaging originally for women, to the amount of research funding spent specifically on each gender. For each Dr. Kadar slowly builds the case that women are doing quite well and that the bias either isn't there, has other legitimate explanations when you get past the initial apparent bias in the numbers, or is against men and not women.

When it comes to research dollars the apples-to-oranges comparison he makes is between breast cancer and prostate cancer research. This is a particular chestnut used by people arguing against gender-bias against women and this is one case where I'm not sure I agree with the premise.

The premise is that breast cancer predominately afflicts women and prostate cancer occurs in men. The number of deaths are similar but not the amount of money spent on research. Much more money is spent on breast cancer research. Therefore there is an inequality or bias against men. At least that's the premise.

I'll be honest on this one. I'm not going to take this argument at face value. Breast cancer and prostate cancer are different. I don't know enough about when in a person's life breast cancer and prostate cancer occur. I don't know enough about whether breast cancer and its treatments make a bigger difference to quality of life than prostate cancer and its treatments do. I don't know if more money should be spent on one or the other. I do know however that at first glance the disparity in research funding seems quite disgraceful. As do many of the facts and figures presented by those arguing that there is a bias against women. At first glance the numbers can look damning. With some investigation the numbers may be much less damning. They may even signs of bias the other way.

As I said I'm not sure on what the correct view of the breast cancer vs prostate cancer research funding discrepancy should be. I don't know if breast and prostate cancer should have similar research funding levels. That's one of the problems with the blanket arguments that women are not being well served by medicine. There are usually more factors at work and other explanations to think about. Statistics without background are meaningless.

When it comes to women in clinical drug trials it turns out that women weren't excluded from drug trials completely. Drug trials go through 3 phases. Women with "childbearing potential" were excluded from phase 1 studies and early phase 2 studies. The reason for these exclusions in the early stages? The early stages when drugs are being tested to see if they are at all safe and not just effective for their intended use? The reason was the thalidomide tragedy of the 60s. Even so the exclusion was removed in 1993, a full year before the article was written.

Do you believe that women were completely excluded from all clinical drug trials in the U.S.? And do you think the ban is still in place? That's the common wisdom that people keep mentioning. It amazes me that people still talk about the exclusion as if it was total and as if it is still in effect.

Dr. Kadar then makes a point I hadn't seen made before. One I didn't grasp until he pointed it out. For all my life I've lived under the assumption that women naturally live longer than men. In my lifetime they always have. Historically though that wasn't the case. Women lived shorter lives than men until this century.

And yes... much of that newfound lead in life expectancy is due to better care during pregnancy and childbirth. Which is, by any definition, medical care at its finest. 

But if you look at the numbers you'll see something else. It took me a while but over time I noticed it. In 1920 men lived to 53.6 and women to 54.6 years old. In 1990 men lived to 71.8 and women to 78.8 years old. Women lived a year longer than men in 1920 and 7 years longer in 1990. But did you catch the other bit of data in those numbers?

Both men and women live longer in 1990. Men have added 18 years to their lifespan and women have added 24 years. Men and women have both benefited from better healthcare, antibiotics, curing of diseases, and advances in medical technology. I think we forget how well we all have done thanks to medical research and technology.

In a nutshell Dr. Kadar makes the point that women receive more healthcare, as many tests and procedures, as much or even more research, and have benefitted more in terms of lifespan from medicine. Yet in spite of this people still claim there is a huge bias against women in medicine and medical research is not serving women well. I couldn't help think of the What have the Romans done for us bit from the Life of Brian during those combative conversations with people who were convinced that women weren't well served by medicine.

For me Dr. Kadar's article was important because of how it took on the main accusations that were levelled against medicine and countered each one with numbers, studies, and data. His article and work didn't stand alone. I recently found a longer piece by Cathy Young and Sally Satel written in 1997. The Myth of Gender Bias in Medicine was released by the Women's Freedom Network. The WFN's website is no more but the article is still online at another site. Yes it's online at a men's site. The article is online with the permission of Cathy Young but it's current form has a few obvious typos. Young and Satel go into more detail than Dr. Kadar. This makes their article hold even more weight with counter examples.

So gender bias doesn't exist? Or if it exists it is exclusively against men then?

No. I don't believe that at all. Gender bias in medicine does exist. Sometimes the bias favours men. Sometimes it favours women. Research money can never be allocated in such a way that there will be no discrepancies. There are certainly areas in which women suffer more than men and vice versa. There are conditions for both sexes that are underfunded and not well researched. Bias of all forms, gender included, does occur in medicine and medical research. There are diseases that affect only women and those that affect only men. Things get even more complicated when you're trying to figure out the impact on quality of life various diseases have instead of just looking at mortality numbers.

But that's not what people talk about. They don't talk about specific cases or particular areas. When research shows no bias against women it doesn't make the headlines. When research shows bias against men it rarely makes the headlines. And when research does show a bias against women the resulting articles tend to overstate and sensationalize the research in question.

Want a case in point? Okay... I'll provide one. It's an article called Women in Pain by Dr. Christina Lasich published on HealthCentral. This short article does a good job of reminding its readers that women do suffer from chronic and painful conditions more often then men. This results in pain that needs relief. The article hopes that as more research is done there will be more effective pain relief for women. So far I'm on board and agreeing completely. Chronic pain is an area that affects women more than men and research has shown that pain relief works differently in women than it does in men.

In the article though Dr. Lasich mentions a study called A Review of Clinical Research and Pain Management in Women and says:

[Witney McKiernan RN - the author of the study] found that the lack of help for women in pain is due in part to the lack of research specific to women in pain. Well, the FDA prohibited the participation of women in clinical drug trials for years. That ban did not start to thaw until the late 1980’s. Now, we have something called the Women’s Health Initiative; however, there continues to be discrimination in early clinical trials and researchers are still failing to account for gender differences when the study cohort does include women. In the past fifteen years with the inclusion of women in the research of chronic pain, many gender differences have already been discovered. PET scans have documented that women respond to pain differently than men.

First off she says there is a lack of research specific to women and then she finishes by saying that women have been included in research into chronic pain and differences have been discovered. Which is it? Let's see what the study itself says. The abstract for the paper in question says:

The involvement of women in clinical research has fluctuated in the course of recent medical history. Over the past fifteen years, the enactment of federal policies supporting gender-based research reflects a new appreciation of the importance of including women in clinical research. Women are increasingly participating in clinical trials for new drugs; however, gender-specific clinical data are lacking, suggesting the absence of data analysis to determine sex-related differences in the pharmacokinetics and pharmacodynamics of drugs. In this report, clinical trial data, meta-analyses, and literature reviews from the past 25 years are used to explore the barriers to in-depth clinical research on women and examine the implications of a research bias for pain management in women. While an extensive body of research on women and pain pharmaceuticals is currently being developed, there are myriad untapped opportunities for future research and policy that have the potential to supplement the knowledge base in this area and provide critical information to clinicians and patients.

The paper suggests that there may be an "absence of data analysis" not an absence of research and that "an extensive body of research on women and pain pharmaceuticals is currently being developed". There is no mention in the abstract of the lack of research mentioned in the article. In the article there is mention that there are "myriad untapped opportunities for future research and policy that have the potential to supplement the knowledge base" as the study points out. To me a myriad of oppurtunities doesn't point to a lack of research. It points to having enough existing research to know which areas to explore next.

I'll let you read the entire study (it's very interesting) but if you don't want to here's the conclusion:

A considerable amount of research demonstrates the importance of using gender-based information when treating pain in women. It is crucial that scientific research continue to support the exploration of sex-related differences in physiology, disease pathology, and the pharmacokinetics and pharmacodynamics of drugs so that women and their care providers can access accurate information and make informed health choices.

The study says one thing... the article another. Even if the two aren't polar opposites there are differences in how the conclusions in the study are presented. Which would you think is correct - that article or the actual study?

More importantly which would you and I be more likely to read from beginning to end? Me too... I'm more likely to read the article and assume the research is well summarized. Who has the time to read all the studies to make sure?

And am I the only one who finds it ironic that it took a lot of medical research into women's chronic pain and suffering, and medical research into the differences of pain between the sexes, and medical research into the implications of those differences... to give people enough information to then claim that medical research isn't doing enough to solve the problem? That there is a growing body of research into fibromyalgia and other chronic conditions should be seen as a good sign right? Not just evidence that there is bias. Even if there is bias currently... isn't the "considerable amount of research" and the "myriad untapped opportunities" signs of progress?

Then there are the accusations that there is conscious and/or unconscious bias among medical practitioners. Such as those mentioned in the Globe and Mail article.

Let me give you a perfect example of gender bias in action. An example of conscious or unconscious bias among medical practitioners. I'll use a "Comment" article in the Journal of Epidemiology and Community Health by M. T. Ruiz and L. M. Verbrugge called A two way view of gender bias in medicine (pdf).

First off if you're going to read it sit down and take a deep breath. It's not a study or a piece of research even though it sites many studies. It reads more like a modern deconstruction of an article about medical research. I think it's heart is in the right place but I think the execution stinks. As a "comment" it can cherry pick studies that support it's conclusion without being a balanced look at the whole field. That's not a bad thing when you're trying to change attitudes and convince people of your position. As I said I think it's heart is in the right place. At least the authors seem to be trying to move the discussion on gender bias forward.

The article's two way view isn't based on men vs women by the way. It's based on the fact that women are short changed when medical research assumes men and women are biologically similar and that women are short changed when medical research assumes men and women are biologically different.

According to the article it doesn't matter what medical researchers think... they're doing a diservice to women. Damned if they do. Damned if they don't.

Where's the conscious or unconscious bias? The bias is in how the authors treat the male gender. The authors never once suggest that there could be even a single case in which bias in medicine may be a bias against men. Apparently that can't happen.

I dare you. Go look yourself. I've found explicit statements in the article that there is a bias against women. I've found blanket statements that say there is bias without mentioning a gender but which seem to assume that the only bias is against women. But I couldn't find a single line that suggests that the bias may go the other way even in one case. To me that's an unconscious or unstated bias in the medical community.

When it comes to real biases in medicine we also have to be aware that trends are important. Even when one gender is doing better than the other the picture may not be rosy. In my Anatomy of a Comment I linked to a startling graph of Canadian lung cancer mortality rates. The rate of mortality for men is falling. Progress is being made. The rate for women is climbing. They haven't yet reached the same mortality level as men but that hasn't stopped cancer researchers from working to figure out what is going on. The goal isn't to find a perfect balance of mortality rates. The goal is to save and improve lives. Lung cancer kills more men than women. Based only on the mortality numbers more research and work should be done to help men exclusively. Yet based on the trends it's important to figure out why women's mortality rate is climbing. This trend is on the radar of the Canadian Cancer Society. After all they pointed the trend out to the public.

This is a good example of work being done for women when they aren't dying as often as men. Yet. But the goal isn't to balance the scorecard. The goal is to improve overall health for everyone.

So What Do I Think?

I said at the beginning that my answer on the question of gender bias in medicine is "No and Yes - in that order". Let me explain.

No. I don't think there is solid evidence of a systemic bias against women. I don't think you could make the case that there is a systemic bias against men either. Any such claim either way has a mountain of counter evidence to disprove. Extraordinary claims require extraordinary evidence. Claiming a systemic bias is an extraordinary claim.

So far I haven't seen enough convincing evidence that stands up to scrutiny to let the blanket claim against medicine stand.

Yes. Of course there is gender bias in medicine. Men and women are similar in many ways and different in many others. There are specific diseases and syndromes that are under researched and not well understood. Research money isn't always spread out fairly (and I'm not even sure that's possible). There are more than a few cases in which women could be better served. There are cases for men as well.

I'm more than willing to entertain discussion on specific cases, specific diseases, and specific research. I will try my best not to jump to the conclusion that bias doesn't or can't exist. In return allow me to be skeptical and check your numbers and your assumptions.

This is an important medical controversy. Much good work can be done to help redress the various imbalances that have appeared over time. I believe that the overall assumption that men are routinely better served than women does more harm than good in moving the discussion forward.

Feel free to disagree... I still have on my asbestos clothes.

If you've made it this far I thank you. I'm not done yet though. Let me tell you what I hope will happen to the discussions around gender bias in medicine. I'm too pragmatic (some would say cynical) to assume that people will take these seven suggestions to heart but I'm not cynical enough to not list them.

1) Let's admit that people have benefitted greatly from advances in medicine. We're all much better off now than people were one hundred years ago. Men and women have both been well served by medicine.

2) Don't assume there is a systemic bias against one sex or the other. If you do make that assumption be prepared for a lot of questions and a lot of criticism. You better bring one hell of a complete and detailed case to the table to even begin to be taken seriously.

3) Assume there are areas of gender bias in medicine. There will always be areas in which women or men aren't well served. Don't say they can't exist. Don't say that gender bias is impossible or not happening. These specific claims have to be taken seriously until they are disproved or shown to be valid. Advances in treatment and drugs may not serve both sexes equally. Of course this means that the areas that have a gender bias will change. Some will go away. Others will get worse. New ones will appear.

4) Please understand the difference between treatments and outcomes. Surgery isn't always the most effective course of treatment. More procedures for one gender may not mean better outcomes. You have to look at outcomes as well.

Different treatment guidelines exist for many diseases that depend on age, health, sex, weight, size, and other factors. When you hear "men get more this" or "women get less that" check to see which gender is getting the better outcomes. Try to determine if everyone is getting the most appropriate care necessary to receive the best possible outcomes.

If the outcomes are completely different between genders check if they've improved over time or if they are getting worse. Take the example of women and lung cancer mortality. Fewer women than men die of lung cancer yet the concern is why is the mortality rate for women rising while the rate for men is falling. Outcomes and trends are important in understanding if research and treatments are helping people.

5) Understand that research in an area doesn't necessarily guarantee results. Certainly not results right away. If a case of gender-bias is found and it seems that no progress is being made check to see the status of research before making accusations. Is there ongoing research? Are there discoveries and advances being made? Are there potential treatments and drugs in the works that haven't made it to clinical trials yet? And is the research taking time just due to the complexity of the subject matter?

A lot of money and research doesn't mean there will be a simple cure soon. Simple cures and therapies are discovered but you can't count on them.

Remember we've handled most of the easy diseases already. With the 'simple' ones taken care of we are living longer lives. Longer lives that are leading to new and challenging medical problems.

6) Even if this seems contrary to all I've said so far... it isn't. If you think there is an area where a gender isn't well served raise your voice and speak loudly and often. If you're concerned about an apparent inequality take the time to dig into the numbers a little and build your case. If you think it's a real problem raise a stink.

Be prepared for counter arguments. Be prepared for resistance. Keep raising a stink if it's required but please do so with humility and discussion. Bring facts to the discussion and not just accusations. Having facts and solid arguments on your side is more likely to get peoples attention in the medical and medical research communities than claims with no substance behind them.

Oh... and if you are more interested in muckraking, or ratings, or page views, or achieving best seller status, or getting on the talk show circuit, or in making political points then in having a useful discussion of the issue you're raising... then forgive me if I don't take you as seriously as someone who can back up their claims and is willing to be have those claims scrutinized.

7) Understand we all want to live longer. We all want a better quality of life along the way. Most of us will get it. Medicine has helped both men and women and it will continue to do so. Let's make the discussion be one of how medicine can do better for women and men instead of one where medicine is attacked, accused, and blamed.

In closing let me say I'm all for informed and sane discussion on gender bias in medicine. I know it exists. I know it will continue to exist. Over time some areas of gender bias will go away and others will be discovered. Maybe we've reached the point where the 'simpler' diseases have been taken care of. We don't die of tuberculosis. Smallpox isn't ravaging millions. Antibiotics and other wonder drugs are common place.

More and more we're left with the more complicated syndromes and diseases. We're left with the ones where gender differences have to be taken into consideration in treatment and research. We're left needing to make sure that gender and other factors are taken into consideration. What we need is to be open to informed discussions so better decisions can be made.

I don't think blanket and baseless accusations help this discussion at all.

And if you think we still need the blanket accusations and that I'm completely full of it... I'm not worried. I'm still wearing my flame proof suit.

Medical Controversy: Where are all the New Cures?

Do some research. Find a drug. Test it on animals. Then on humans. Get approval. Profit. That's all there is to finding a cure and getting it to market. Right?

The more sobering truth is told in Why Don't More Medical Discoveries Become Cures? It's a wonder anything gets to market at all.

Medical Controversy: Apparently Everyone is an Expert

With many areas of medicine most of us laypeople know how little we know. We may have an opinion on cancer or leukemia but unless we have personal knowledge we tend to leave those to the experts. For much of what medicine covers we leave things to the experts. After all would you trust just anyone to look after your heart problems?

There is one area in which people have more than just opinions. An area where people are sure they know what's right and they know what's wrong. That's health, fitness, and weight loss.

If you think about it for a second those are areas that medicine, or at least biology, could be authoritative on. Want to know how to lose weight? Consult the current best practice guidelines given to physicians and health professionals. Want to know how to achieve a fit body? Consult similar guidelines for the type of body you want. Unfortunately there is no such set of best practices and guidelines. Or at least none that I've found that covers these areas authoritatively.

Which isn't to say that people haven't written on these topics at length. Some with more rigor than others. For example there's the Beginner's Health and Fitness Guide which is one of many such guides and sites on the web. Even in publications that specialize in these sorts of guides the current best practice changes all the time. The article Interval Training Doesn't Work from T Nation is a good example of this.

I'm not sure if I have an opinion on weight loss or fitness. All I know is what worked for me when I lost a great deal of weight. Like anyone who was successful (at least for a time) I like the approach I took. Unlike many I don't go around evangelizing it because I'm not sure it will work for anyone else. If you're interested I lost weight using a personal variation on The Hacker's Diet.

Medical Controversy: Change Can Take a While

There's something powerful about time. What is controversial for one generation is no big deal for the next. Attitudes and perspectives change. Even strongly held beliefs can find themselves weaker over time.

I once heard the argument that the late Canadian Prime Minister Pierre Trudeau had done more to solve the problem of Quebec Nationalism by changing immigration laws than by any other means. Changing the laws allowed for a flood of immigrants to Canada from all over the world. Those who came in to Quebec learned to speak French and became Canadian citizens. They were new Quebecers who had no emotional attachment to the historic divide between French and English. They were Canadians first and Quebecers second. For them the Plains of Abraham was just a historic battle. By the time the second referendum came around there were just enough of these new Canadians in Quebec to ensure that Quebec would stay as part of Canada. A change to immigration laws helped keep Canada together years later. As the leader of the separatist movement at the time Jacques Parizeau said in his speech after losing the referendum "It's true we have been defeated, but basically by what? By money and the ethnic vote." (video). Ethnics referred to all those new Quebecers from around the world.

There is power behind those that are willing to take the long view and move towards a goal even if it takes years. Nationalist views are some of the most deeply held and yet even those can be slowly eroded and weakened. What if the same is true with other deeply held beliefs?

Could the changing of the generations and slow change towards a long term goal change the view and position of abortion in America? The New Abortion Providers in the New York Times explains how some people are trying to make this long term change happen.

It will be interesting to see what happens over time. Will attitudes change because there are more doctors and hospitals that perform abortions? Will it change because over time Roe v. Wade becomes part of the landscape? Will it become as accepted generations from now as a part of medical care as it is in other places around the world? Or will all the endeavours and time still leave America as divided as it is now over the issue?

Medical Controversy: The End of Life

North American's don't seem to handle death very well. Other cultures seem to have much more robust and sane traditions on how to handle death in the family. We seem to want to get grieving over with and as a society we don't allow much time for grief or time to cope. This cultural aversion to dealing with death isn't limited to the time after loved ones have died.

The fastest growing segment of our population is the elderly. Those people who've lived a long life and one healthy enough to make them prone to the diseases and problems of the old. We face having a significant portion of our population being elderly with all the trials and tribulations that entails. We're living long enough to fall prey to dementia and to live to the point where we need help every day to just live.

Which makes dealing with the taboos around death important. Choosing how we wish to live out our later years. Or even if we wish to live them out at all under certain conditions. As more people move into the final years of their lives they will start to contemplate how they wish to handle aging and death. Spouses, children, and grandchildren will watch people making difficult and very personal decisions about life and death.

A particularly poignant example that happens to touch on many of the issues we might face is What Broke My Father's Heart by Katy Butler which also carries the telling subtitle "A Pacemaker Wrecks a Family's Life".

Our culture is not yet at the point where we feel comfortable dealing with these issues. We're not used to discussions over do not resuscitate orders or what type of life is or isn't worth living. It will be awkward. It will be challenging. If we do it right maybe we won't look forward to our later years with dread and fear. Maybe they can be our golden years.

Medical Controversy: Multiple Sclerosis is a Vascular Disease?

When new unproven treatments appear I tend to think that it will be the medical profession that pushes them before they are shown to work. I keep forgetting the other side of the equation. Namely the patients.

In 1995 Elena Ravalli started suffering from the symptoms of multiple sclerosis (MS). It so happens that her husband is a professor of medicine at the University of Ferrara in Italy. He went looking for the solution to MS and came across an interesting finding. Her husband, Paolo Zamboni, went looking and found a potential link between MS and blocked veins that drain blood from the brain.

It may be that the blocked veins allow iron and other substances in the blood to cross to cerebrospinal fluid where they cause damage.

Then he performed a simple operation on his wife alongs the lines of an angioplasty. He unclogged veins and let blood flow freely. His wife hasn't had an attack since.

A couple of his scientific papers are accessible online. They do tend to have the dense titles of most scholarly medical research. For example there is Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis and the only slightly more accessible The Big Idea: Iron-dependent inflammation in venous disease and proposed parallels in multiple sclerosis.

I first heard of this research in late 2009 when The Globe and Mail covered the background of his work.

With early promising results (beyond just his own wife) patients with MS have jumped on the potentially simple cure. If a quick procedure to unblock some veins can stop and possibly reverse MS that is light years beyond any previous therapy. It makes complete sense to see patients actively trying to get treatment.

And this is one of those cases where the researcher himself is urging patience and caution. Zamboni himself says that doctors who are performing the procedure are acting irresponsibly but then he tempers his words saying that vascular neurologists should recommend the procedure for patients with advanced cases. Either way much more research needs to be done. But that isn't stopping patients. They are travelling to places where doctors will perform the procedure.

Put yourself in the shoes of someone with MS. There is a potentially revolutionary breakthrough that can remove MS completely with a simple surgery but it is still being researched. If the chances of side effect or complications from the surgery was low would you travel to the ends of the earth for treatment?

Most of us would if we could afford it.

To those that have a disease medical science will usually seem too slow and too cautious.

Medical Controversy: Placebos are Fake Aren't They?

Placebos are in the news again. This time in conjunction with homeopathy of all things. Doctors in the United Kingdom's National Health Service (NHS) voted on whether homeopathy should be provided and paid for by the NHS. There were doctors who thought it should be provided. They didn't think homeopathy was proven by evidence based medicine but because it did provide some relief as a placebo. The vote went against homeopathy but the question of how doctors should handle placebo effects was left unresolved. Martin Robbins summarizes the issue well in the Guardian.

Placebos are simple. Have a doctor give a sugar pill or a saline solution to a patient while saying it's an effective medicine. If the patient believes it is a real medicine they end up thinking that it works. Simple right?

Turns out it isn't that simple. In some cases placebos can actually generate an internal chemical response in patients. Give people a placebo painkiller and they will secret opiods that are pain killers. So it isn't all in the mind.

It gets even weirder. Expensive placebos work better than ones that cost less. We apparently adjust our internal expectations to match our value judgements.

Dan Ariely talks about his research in a talk at Cody's Books that was captured by fora.tv. The section on placebos in particular is excerpted here. The talk covers a wide range of topics that he's explored so expect to be drawn in to the full talk. You'll end up learning a great deal about things other than placebos.

Even weirder the power of placebos isn't just tied to how much they cost. It's tied to what we think modern medicine can do for us. Studies have shown that placebos work as well as antidepressants. But not because antidepressants don't work. They work very well. We 'allow' placebos to work because we think they are the medicine they are replacing. If you tried to give me a placebo for something I don't think medicine can cure then the placebo may not be that effective. But give me a placebo to help me with something I know is treatable and the results are different.

Jay Dixit's 2002 article New! Improved! And Still 100 Percent Fake is a great overview of the increasing power of placebos.

Both Dan Ariely's talk and Jay Dixit's article raise interesting issues. What would happen if medical studies told us how much the drug might cost? How can we take all the research into placebos and the way in which our perceptions help our treatments and turn that information into better ways of delivering care? Can we use the power of our minds that placebos uncover in conjunction with real medical treatments?

It begs the question... how can we fool ourselves into being healthier? And will it work if we know we're doing it to ourselves?

Medical Controversy: The Power of Prayer?

Is prayer better than a placebo? Would it help to have lots of people praying for you? Or should they rather spend their time and energy doing something else?

A lot has been written back and forth on the issue. Some studies find prayer effective and more than a few popular books have been written on the subject. More studies find little or no effect at all. I don't think as many books have been written on that side of the debate. Certainly they don't seem to sell as well.

Back in 2002 A Prayer Before Dying appeared in Wired magazine. A story about the life and death of Elisabeth Targ. Elisabeth was a psychiatrist who ran a small double blind study about the power of prayer to help AIDS victims in 1995. The initial, albeit small, sample showed great promise so she went on to do more research. On the face of it you'd expect the article to them move on to her subsequent research and especially the attempts to find significant results in a study that wasn't turning out so well for the position of prayer. And those areas are covered. But the irony is that Elisabeth Targ was subsequently diagnosed with a brain tumour. The results of that diagnosis make everything that happened afterwards even more pointed and poignant.

Trying to find a reproducible, tangible, and useful effect of prayer to help illness is an ongoing effort. So many people assume that there is a connection that I don't think the research will stop anytime soon. Even if little has been found so far. Of course for those who think there is a link each study that contradicts their conclusion has to be fundamentally flawed and thrown out.

It's human nature of course.

But what happens if we

end up with more studies like this one? The simply titled Study of the Therapeutic Effects of Intercessory Prayer (STEP) in cardiac bypass patients: A multicenter randomized trial of uncertainty and certainty of receiving intercessory prayer? A study in which some people were randomly assigned to one of three groups:

1. People who were told they may or may not be prayed for and who were actually prayed for
2. People who were told they may or may not be prayed for and who weren't actually prayed for
3. People who were told they were going to be prayed for and who were prayed for

Now this is just one study. It isn't conclusive proof one way or the other. It is, however, a well run clinical study looking at the issue. By the way I like the fact that it's structured so that none of the patients is lied to. No patient is told they will get prayer and then not prayed for. I suppose that combination wouldn't have passed the ethics board. Still it is one study among many. A study with an interesting conclusion:

Intercessory prayer itself had no effect on complication-free recovery from CABG, but certainty of receiving intercessory prayer was associated with a higher incidence of complications.

In other words... the group that knew they were being prayed for (and there were actual prayers) had the more complications. There was no difference between the first two groups. In this case not knowing if you were being prayed for or not didn't make a difference. So knowing you're being prayed for turned out to be the worst option. That's not what most people would expect.

What happens if prayer has a negative effect? What if assuming the prayers of others will help actually hurts your chances? What will people make of studies if things turn out this way instead?

And will a book telling you to avoid the prayers of others ever make the best seller lists?

Medical Controversy: What if Medical Rescue is Unsafe?

Downtown Toronto has a cluster of hospitals along University Avenue. Whenever I'm downtown and I hear a low flying helicopter I hope for the best for the patient that's being transported. Traffic choppers fly high enough that you can barely hear them at all. Only helicopters being used to transport patients are low enough to be heard.

The medical transport helicopter is a wonder of the age. If you're in a very bad car accident you can be transported to a hospital in time to safe your life. It's comforting to know they're out there and that they are available when you need them.

Maybe that's a naive thought but it's the one I always had in mind when I thought about them.

What if the choppers aren't just used when they're necessary? What if they don't have to have all the safety equipment of other planes and helicopters? What if they are the most dangerous form of flying in the United States?

Popular Mechanics looks into the issues and problems with medical helicopters. Hold on it's a bumpy ride.

Follow Up: Causing Cancer...

Every day you read in the paper that THIS causes cancer and THAT will help to prevent it. How are you supposed to know what's good and bad today?

Sadly this isn't an ongoing project but Kill or cure? was a one time snapshot of what the Daily Mail had reported on a whole list of items.

The idea came via an article in the Guardian by Ben Goldacre. In it he pointed out that the Daily Mail is on a quest to categorize all the inanimate objects in the world into those that cause, or cure, cancer. He pointed out that sooner or later they would stumble onto a 'real' threat and probably be laughed at.

Paul Battley built an online app to allow the crowd to categorize Daily Mail articles about cancer. You decide what the article is talking about (magnets, vegetables, or cayenne pepper) and whether the article says it causes or cures cancer. The result is a snapshot of the state of the Daily Mail's view on cancer.

I wonder if this should become an ongoing project that slowly tracks trends and changes over time?

Have fun deciding what is good or bad for you.

Medical Controversy: A Diagnosis that May Change Medical Research

What would you do if you found out you had a higher chance of maybe getting a certain disease later in life? Most of us would probably learn what we could about the disease, figure out what we could do to decrease our chances of getting it, and then go on with our lives.

People who's families have dispositions for certain diseases don't stop living because of what might happen after all.

But what would you do if you had such an increased chance and you happened to have a lot of money? You'd fund research into the disease. At least that's what I would do.

What if you're not that impressed with how medical research is done? What if you think there are better ways to make progress and discover new information? What if you have enough money to have people do the type of research you want to see?

Welcome to the world of Sergey Brin. Co-founder of Google and a person who might (just might) get Parkinson's.

Wired magazine's article Sergey Brin's Search for a Parkinson's Cure  has a full rundown on what Sergey is trying to do and how he's trying to do it. There are a lot of implications for research into any number of conditions and syndromes. What's interesting to me is that Sergey isn't proposing to throw out mainstream medicine. He's trying to help it along in certain areas and in certain ways. As he says in the article:

"I’m not an expert in biological research. I write a bunch of computer code and it crashes, no big deal. But if you create a drug and it kills people, that’s a different story."

While not replacing the world of medical research as we know it the techniques he's pioneering may be ones that give us faster and deeper insight into connections that are otherwise hard to find. There may be an endless string of new insights and ideas that will be made by the same techniques that helped make Google itself so successful.

I wonder if all of this would have happened if he hadn't been diagnosed with an increased chance of acquiring Parkinson's?

Medical Controversy: Salt Continued...

On Monday I wrote about the controversy over salt. The article I linked to was written over 10 years ago. 1999 to be exact. So now it's over a decade later and do you think the salt debate is any clearer?

Of course not.

First may I present the summary for the position of salt reduction via the New York Times. A little light on the controversy and harder on the corporate backlash at being told to reduce salt. This approach emphasizes that the controversy is over and now it's a matter of how public health and government can control salt in foods.

Then may I present a counterpoint from an editorial in the Financial Post. A lot more emphasis on the science and the still controversial nature of the debate. Emphasizing the numbers and the changes (or the lack of changes) in blood pressure.

It will be interesting to see how this all plays out over the next decade or two. Will salt reduction become public policy? Will it be shown to have any beneficial impact? Or will it have no effect or worse a negative effect? If different countries take different approaches to salt then we may all end up as part of one large study into the effects of salt.

Meanwhile I'm going to do what I think is sensible. I'll add salt to my food when it improves the flavour and when I think it's required. I'm not going out of my way to avoid salt.

Medical Controversy: When is a Controversy Over?

Quick... what change of diet is the best way to reduce your blood pressure? What has been shown to cause headaches and other problems and should be removed from processed foods? What common seasoning is bad for you?

Did all your answers involve salt? Simple ordinary table salt? It's common knowledge that salt isn't good for us. Since it's common knowledge it must be true right?

Right?

What if the science isn't so clear cut? What happens when the vast research includes studies and calculations that support both sides? What happens when researchers want to find out more about the risks and the benefits while anxious public health officials want to make decisions right now?

In 1999 Gary Taubes won a Science in Society Journalism Award from the National Association of Science Writers for his article The (Political) Science of Salt.

Maybe the link between salt and hypertension isn't as strong as we think. Maybe, as the article states over a decade ago, as research continues the benefits of salt reduction are seen to be smaller and smaller. This is a good example of how complicated issues are and how difficult it is to even agree which studies are good and useful and which aren't. To quote the article:

One-sided interpretations of the data have always been endemic to the controversy. As early as 1979, for instance, Olaf Simpson, a clinician at New Zealand’s University of Otago Medical School, described it as "a situation where the most slender piece of evidence in favor of [a salt-blood pressure link] is welcomed as further proof of the link, while failure to find such evidence is explained away by one means or another." University of Glasgow clinician Graham Watt calls it the "Bing Crosby approach to epidemiological reasoning" — in other words, "accentuate the positive, eliminate the negative." Bing Crosby epidemiology allows researchers to find the effect they’re looking for in a swamp of contradictory data but does little to establish whether it is real.

Even if the studies and the data have become clearer in the last decade there are important underlying questions brought to light in the article.

• What happens when one piece of the puzzle (let's say salt) is only part of a much more complicated mechanism (for instance how the body maintains blood pressure)? Maybe it isn't always possible to reach simple conclusions in all cases.
• Who gets to decide which studies are good and which are bad? The concept "it doesn't support my view so it must be wrong" works to explain every point of view.
• When should incomplete or unfinished science be used to form public policy? Should public health officials change official policy after each new discovery or wait for long term results? What happens when science gets applied to whole populations of people?
• Who can act as arbiter and interpreter in the middle of scientific controversies? Who can explain what is going on to the rest of us? I don't want to hear from someone who's attached to one side of each controversy.
• If enough people think that reducing salt reduces blood pressure then is the controversy over before the science has been made clear? Could we end up with a massive public re-education campaign explaining that salt reduction isn't necessarily good in some cases?

I could go on. It's a fascinating read and well worth your time. Gary Taubes' article gives some insight into the human nature of science. All while still leaving me unsure whether I'm allowed to add salt to my food.

Medical Controversy: Cigarettes and Cancer

So now it's no longer controversial - smoking is closely linked to cancer. Not every smoker will get lung cancer but their chances are much higher than they are for non-smokers. And it's easy to tell why smoking is bad for you right? All those chemicals, all that tar, and the noxious fumes and gases right?

The question of the day sounds simple. How does smoking cigarettes cause cancer?

Well one theory making the rounds is that it's because of radioactivity. You heard me right - radioactivity in cigarettes. The non-scientific group that seems to push this theory the most is the pro-cannabis lobby. They like to show that smoking cannabis is less dangerous than smoking cigarettes. Any time there is a theory that shows that smoking tobacco is bad for you in a way that smoking cannabis may not be they jump on it.

Sol Lightman, in UMASS CANNABIS wrote how the hidden danger in cigarettes is radioactive material in cigarettes. The article pushes the idea that most cancers due to smoking are caused by radioactivity.

This view is disputed. Certainly the number of chemical carcinogens seems to make it hard to reach a hypothesis that only the radioactivity is bad for you. I don't think many researchers in the field would say that smoking would be safe if you could remove the radioactive compounds.

Still... did you even know there are radioactive compounds in cigarettes?

Radioactivity is a scary word for many people. Which is odd since we live in a radioactive world. Not just since the atomic age opened. Our world is slightly radioactive. It's all around us. In fact there may be more of it around you than you ever thought.

Medical Controversy: Much Ado About Nothing...

No... this is not a post about the placebo effect. That's not the nothing I'm talking about. Well actually I may end up talking about placebos but that's not the nothing I want to start with. The nothing I want to start with is homeopathy.

I mentioned quickly in Anatomy of a Comment about the homeopathy debate going on in the UK. I mentioned one of the groups that is fighting the pseudoscience and quackery of homeopathy is 1023.org.uk. But a much simpler description of homeopathy and the lack of good science behind it is a long comic strip by Darryl Cunningham called simply Homeopathy. Which not only covers the lack of science behind homeopathy but covers some of the reasons it may work. Reasons that have nothing to do with the dilutions themselves. This may be a case of things working but not for the reasons expected by the practitioners. It ends with some scary reasons why homeopathy, and especially its practitioners, may be very bad for people instead of just merely harmless.

Still it seems like reason and evidence is winning this battle. It's getting harder for practitioners to make unproven claims. This makes sense. People who make claims have to be able to show the claims are valid. All the hard science seems to disprove the claims of homeopaths. Most, if not all, of the basic claims as to how homeopathy work have been repeatedly shown to be false.

But even without digging too deeply the pseudoscience behind homeopathy doesn't make any sense. If water could have a memory of what is was in it at one time and later diluted away then how do you delete the memory? How do you reset water to not have the memory of anything? And wouldn't that mean that tap water would have the memory of every chemical used to make it safe? And wouldn't every stream or lake have the memory of every chemical or agent that had been diluted in it?

Of course many people swear by homeopathy. They're convinced it works and they are convinced it helped them in some meaningful way. As I mentioned the cartoon covers some of the reasons it may be helpful to visit a practitioner. It also covers the reasons going to the practitioners may be harmful to your health as well. He gives good examples of how practitioners have been repeatedly shown to not suggest mainstream medicine in conjunction with their homeopathic remedies. The specific case he mentions of Penelope Dingle is very disturbing on several levels.

Alternatives as a supplement to mainstream medicine is one thing. Alternatives that exclude proven medical treatments are another thing altogether.

Yet what also caught my eye in the cartoon was the line:

There have been many attempts to reproduce Benveniste's experiments. But any positive results have been neither consistent or convincing. All evidence points to homeopathic remedies being inert and no more effective than a placebo or just letting the illness run its course.

Which got me thinking about all the intangibles that effect each and every one of us when it comes to illness and health. The placebo effect is one of those. Attitude and outlook are also mentioned repeatedly as being important - even by mainstream medical practitioners. But not every placebo works. Not everyone with the right attitude survives and people who are pessimistic about their chances aren't always proven right. These are effects that are hard to quantify and hard to measure. How do you measure a patient's outlook? How do you tell if they are feeling depressed with their situation or if they have an overall positive feeling instead? How do we begin to quantify and understand the more intangible factors?

And if, for example, you have some sort of measurable sense of how a certain attitude affects outcomes in positive ways for certain diseases... how do you prescribe an attitude?

Medical Controversy?: Better Vision Via New Barcodes?

I can still remember what it was like before I knew I needed glasses. Most things were just slightly fuzzy. To see things clearly they had to be very close. Just in front of my face was a good distance. At night every was even fuzzier.

Of course I didn't realize that this wasn't normal. Glasses changed everything. Things weren't vague and smeared. Even now when I get a new set of glasses that are the right strength for my slowly weakening eyes I'm reminded that I can make out leaves on trees when they are across the street. Glasses have made my life much easier. Something as simple as a two pieces of curved glass can change one's world.

There are a number of groups providing eye care and glasses for the third world. Third World Eye Care Society Canada is one group that collects old pair of eyeglasses and sends them to were they are still useful. ORBIS is a group treating preventable blindness around the world. ORBIS is also the group with the flying eye hospital.

One of the problems with delivering optical care in rural and rustic settings is the equipment required. How do you figure out what glasses someone needs. Carry a large box containing lenses and ask someone to stare at an eye chart as you try different strengths over and over? Bring in a complicated and expensive machine that does it with lasers? There should be an easier way.

Maybe there is an easier and cheaper way. The idea and concept behind it came from the idea of using camera blur to display barcodes. Yes barcodes via bokeh.

Bokeh you ask? It's the term for the circles of blur that appear on your camera from out of focus points of light. If you point your camera at a Christmas tree in a darkened room and override the autofocus you get a picture that evokes the whole idea of Christmas.

At MIT researchers realized that you could put an illuminated barcode behind a lens to make a small glowing red dot. When a camera takes an in focus picture all you see is a small glowing dot. When the camera is out of focus a pattern or barcode emerges in the blur. The researchers called it a Bokode.

One of the researchers demonstrated bokodes to his wife and realized that it might be possible to use the idea behind bokodes to develop an eye tester. The Near-Eye Tool for Refractive Assessment or NETRA may be the solution to providing eye tests almost anywhere for almost no cost.

I'd never have guessed that high tech barcodes for cameras would lead to inexpensive eye testing. If a device like this was available when I was younger I may have ended up with glasses years earlier. Which would have made life a little less fuzzy when I was growing up.

Anatomy of a Comment

Just over a week ago I wrote Why Haven't We Beaten Cancer Yet?. In which I concluded that the war on cancer won't be over soon. Someone named Dr. Ian Clements left a comment on my short blog post. The comment leaves me a little bewildered so I'd like to go through Dr. Clements points one at a time.

I am only going on your comments, rather than Dr Coussens.

Fair enough. I quoted from an article by Dr. Gorski where he talks about a presentation by Dr. Coussens. So I can't speak for or against Dr. Coussens with any authority. As I say in my Longer Web Manifesto I like reading and considering opinions and ideas that I don't agree with. I may agree with Dr. Coussens but I'm not sure. I haven't read any of his work, I haven't seen his presentation, and I certainly am not in a position to defend or attack what Dr. Coussens has said. So it makes sense to comment on what I've said instead.

There are several things wrong with this. Firstly, orthodox medicine makes similar misleading claims as CAM - but generally with far worse side-effects.

I'll assume that by CAM Dr. Clement is referring to Complementary and Alternative Medicine. As for "similar misleading claims" I'm not sure what he's getting at. The problem with most quacks and unproven alternative medicine claims is not just that they are misleading but also that they don't stop making claims when there is evidence proving them wrong. The struggle against homeopathy going on in Britain and around the world is a case in point. It doesn't seem to matter how much evidence is weighed against the quacks. In many cases they keep promoting useless or dangerous "cures".

I'll give the British chiropractors some credit compared to the homeopaths. When the evidence against chiropractic claims to cure various diseases started to make headlines the chiropractic association quickly told practitioners to remove these claims from websites and ads. Of course they shouldn't have made many of these claims in the first place but at least they pulled back to what they still think is a defensible position.

Is orthodox medicine incapable of making misleading claims? Of course not. Does orthodox medicine correct itself when a claim it makes is shown to be unproven, unfounded, or wrong? Do the claims and techniques change as new research is done and new treatments are found? Yes and yes. It may take a long time for change to take place but it happens eventually. Otherwise we'd still be treating cancer with the tools and techniques that existed in 1970. Or 1900. Or even before.

Is orthodox medicine capable of making claims that are known to be flat out wrong and dangerous? I'm sure it has happened. The fact that medical associations have removed doctor's licenses and that there are cases of true malpractice shows that. But you'll notice that orthodox medicine is at least trying to police and correct those people who are licensed to be doctors. What qualifications do I need to be a quack? Some alternative medicine groups have created associations and they do provide credentials and codes of conduct. The true quacks are the ones that don't think any monitoring or checking is necessary. And what, aside from the courts of law, will stop them from making malicious and dangerous mistakes?

Secondly, if orthodox cancer has improved so much, why are more people getting cancer and dieing of it?

I never said the war on cancer had been a complete success. The whole point of my post was that cancer is a more complex problem then was once thought. Research is ongoing. I don't think I ever said we'd won this war. I only said there have been advances in treatment over the last 40 years. So this doesn't even apply to what I wrote.

Yes, perhaps boosting the immune system may not always be good (tho; one can say that even more about chemo, radiation and surgery), by and large enhancing the immune system is helpful. Hence the huge increase attention to anti-cancer vaccines, which are inherently immune-boosting.

Dr. Gorski's quote warned against over simplifications. When it comes to boosting the immune system Dr. Gorski wrote that "As we’ve said before here, it’s a meaningless claim, because sometimes boosting the immune system is bad, as in autoimmune diseases." Neither in my post nor in the quote from Dr. Gorski's article did either of us say that boosting the immune system may not be useful in some cases. He was warning against overly simple claims.

Dr. Clement may be correct that there are times in which enhancing the immune system is useful. Many cancer treatments (chemo, radiation, etc) are very hard on the patient. Hopefully harder on the cancer of course. Even so my point is still valid. Oversimplifications aren't always useful and can be dangerous.

As to 'great advances in cancer treatment', see above. Many cancer survival rates are worse (bladder cancer, for instance); only a few rarer cancers have longer survival rates; and much increased survival rates are often due to earlier diagnosis rather than better treatments anyway.

 Now we have something I can check with numbers and statistics. Just before the numbers let me make a couple of points:

1. If a survival rate is better due to "earlier diagnosis rather than better treatments" it is still a better survival rate. And it's orthodox medicine that promotes testing and techniques to make earlier diagnosis. If medicine catches more cancers early when they can be treated effectively that may well make the survival rates lower for the cases that aren't discovered until they have progressed further .
2. Survival rates are different than determining how effective individual treatments are. Dr. Clements isn't claiming that treatments are less effective. He claims that "cancer survival rates are worse (vladder cancer, for instance)."
3. I'm Canadian, I live in Canada, and since I don't know where Dr. Clements lives I'm using Canadian numbers where possible. (As an aside... I love the Public Health Agency of Canada. Numbers everywhere!).

So now on with the show. Let's look at some numbers. Rates are in deaths per 100,000 Canadians. The links go to graphs were the trends just pop out at you. These are population wide mortality numbers they are not survival rates. I'll get to those later. For most of us we'd like to know our chances of dying from a certain cancer. Or cancer in general.

Canadian bladder cancer mortality rates from 1984 to 2004. Males went from 8.06 to only 7.02. Women from 2.41 down to 2.01. Seems like it's more survivable now. So let's keep looking.

Canadian breast cancer mortality rates from 1984 to 2004. Males are staying close to constant. Women went from 30.73 to 23.11 deaths. Need more?

How about an example of why things aren't simple? Canadian lung cancer mortality rates from 1984 to 2004. Males from 80.16 down to 60.61 while females went 22.14 up to 36.09. Graphs can show trends but they don't tell the whole story. Why is the mortality rate for lung cancer in women going up? More female smokers? Unequal application of testing and treatment? (Though I point out men are still dying in larger numbers). If you look at the combined rate for men and women then it does look like the overall mortality rate hasn't changed over twenty years.

That unchanged lung cancer mortality rate does take into account earlier diagnosis and better treatments. Hence my point that the war on cancer isn't over yet.

You're chance of dying in Canada (the overall cancer mortality rate) has remained the almost the same for women (151.84 down to 146.96) and has gone down for men (248.09 down to 212.06). That's the number of due to cancer for each 100,000 Canadians. 

What about survival rates? After all mortality rates are the combination of the number of cases of a cancer and the survival rate of those they get the cancer. Survival rates tells us how many people who actually get the cancer go on to survive.

The best source of bladder cancer survival rates I found was from the American National Cancer Institute. I searched for (deep breath): 5-Year Relative Survival by Year DX, By Cancer Site (Urinary Bladder [Invasive & In Situ]), All Ages, All Races, Both Sexes, 1975-2002.  I don't have a permanent link to the resulting table but you can generate a graph or a table starting from this page.

The result? 74.3% 5-year survival rate in 1975 increased to 81.4% in 2002. Bladder cancer survival rates have increased over time!

There is much wrong with cancer research, not least that any new treatment takes decades to see whether there is an improvement. And if not, tough; but if there is, the alternatives meanwhile have continued wrongly. And during all this time most cancer sufferers have died (the average time between diagnosis and death is less than 5 years)

There's something wrong with waiting decades to see if there is an improvement? Do all clinical trials take that long? Do new treatments have to wait decades before being put into use if they are shown to be effective more quickly? Don't you want researchers to constantly look at years of data to determine what is working and what isn't? Aren't the treatments that are offered to patients constantly changing based on long term survival rate information, additional research, and all sorts of other numbers as well?

As for "And during this time most cancer sufferers have died (the average time between diagnosis and death is less that 5 years)" I think Dr. Clements' information is over 30 years out of date. Back at the National Cancer Institute I search for (deeper breath): 5-Year Relative Survival by Year DX, By Cancer Site (all sites combined), All Ages, All Races, Both Sexes, 1975-2002. The results?

• In 1975 50.1% of people survived 5 years after diagnosis.
• In 2002 68.5% of people survived 5 years after diagnosis.

Dr. Clements continues:

"There aren't necessarily simple and easy answers." There are well documented, but otherwise inexplicable, successes following simple treatments - at least as good as those of the orthodox treatments.

I'd like to know about those treatments he mentions. The ones that give "well documented, but otherwise inexplicable, successes following simple treatments...". I'm not being facetious. I'm being serious. I'd like to know what simple treatments work as well as orthodox medicine. If those treatments are as useful as current medical practice, if they have fewer side effects, and if they have been shown to work (in properly held clinical trials) I'd like to know why they aren't in use at the moment. Denying proven treatments to patients is scandalous and something we should investigate and uncover.

If those simple treatments haven't been shown to work effectively in clinical trials yet there is still hope. Proper clinical trials performed under supervision and with done with all the ethical standards required when working with real patients should be considered for any treatment that shows promise. Of course validating treatments takes time. Studies have to be carefully designed, properly funded, and well run. And clinical trials are expensive and only so many can be done at any time. Funding isn't unlimited. So treatments and therapies that have been shown to work in animal tests, or that are based on extensions of already proven research may end up getting priority over unproven and otherwise inexplicable treatments. Maybe effort should be placed into trying to explain those treatments so they will be taken seriously be the medical establishment that is trying to cure cancer.

Dr. Clements ends with:

I could go on (such as there are many cases of spontaneous remissions which are never investigated) about the purblindedness of the orthodox medical profession, hostile to anything from without.

Has no research been done into remission? There has been absolutely no work done on this topic? A quick search found that at Ovarian Cancer Canada's page on chemotherapy they say: Chemotherapy can stop cancer from spreading and dramatically slow the growth of cancer cells. This can help put cancer into remission enabling you to prolong your life. So treatment regimes can and do use the mechanisms of remission to help patients. 


Forgive me if at this point I don't spend too much time finding out if there has been research into "spontaneous remissions which are never investigated". Just a quick search found an article from Discover magazine in 2007 called The Body Can Beat Terminal Cancer - Sometimes. Which contains the following:

• Call it remarkable, call it miraculous—such spontaneous remissions are as fascinating to physicians and scientists as they are rare. Doctors would like to understand cases like Matzke’s, who was given just 18 months to live but would survive another 18 years. And although a recurrence of the cancer—this time in his brain—would eventually claim his life on November 8, 1991, the fact that his lung tumor disappeared completely begs for an explanation.

Followed by this sensible statement about how hard it is to study spontaneous remissions:

• Pinning down spontaneous remissions has been a little like chasing rainbows. It’s not even possible to say just how frequently such cases occur—estimates generally range from 1 in 60,000 to 1 in 100,000 patients. Many cases, when subjected to close scrutiny, prove not to have been remissions at all.

The article goes on at length on the subject. Remission, spontaneous or otherwise, is a part of ongoing medical research. As with many things being looked at it's more complicated than it initially appears.

As for the "purblindedness of the orthodox medical profession" may I point out that every current orthodox treatment started as an alternative to existing medical practice. Medicine is constantly changing with alternative views becoming current best practice. Anyone who has an alternative approach or treatment that can hold up to study and analysis, and which is shown to by more effective and less dangerous can be the person who helps create the new orthodoxy.


Let me summarize the highlights from the Canadian Cancer Society Fact Sheet for 2008:

• For Canadian men:
• Since 1988 the overall cancer death rate has been declining
• The overall cancer incidence rate rose in the early 1990s then declined sharply
• Incidence rates:
• are up for thyroid and liver cancers
• are down for lung, stomach, and larynx cancers
• Death rates:
• are up for liver cancer
• are down for stomach, larynx, prostate, oral, and lung cancer
• For Canadian women:
• The overall death rate has been essentially stable since 1979. If lung cancer is excluded a major decline of 20% has occurred over the last 30 years
• The overall cancer incidence rate has been increasing slowly (due to increasing incidence of lung cancer)
• Incidence rates:
• are up for lung and thyroid cancer
• are down for brain, larynx, cervical, and stomach cancer
• Death rates:
• are down for Hodgkin lymphona, stomach, and cervical cancer
• Overall in Canada in 2008:
• 39% of women and 45% of men will develop cancer in their lifetimes
• 24% of women and 29% of men will die from cancer

Orthodox medical science has made progress and yet, as my original post said, the war on cancer isn't over. It isn't as simple as "we are winning" or "we are losing".

Let me end with a quote I unfortunately can't find on the web because I heard it offline years ago. A cancer researcher was talking about the slow change in the level of fear brought on by a diagnosis of cancer. How patients still react strongly when they hear the word cancer but in many cases breathe easier when they learn what their chances are and what treatments are available. He summed up the slowly changing attitude society has about cancer by saying:

"Years ago we all knew someone who died of cancer. Today we all know someone who survived."

Medical Controversy: Denying the Evidence...

Why is it that overwhelming evidence and research are denied? Why does it seem that the more certain science is of something the harder the cranks and crackpots fight back?

What happens when unsupported theories and ideas endanger lives? Should those who deny care, treatment, and medicine in spite of evidence be held responsible? Even criminally responsible?

These aren't just vague questions.

AIDS denialism in South Africa upped the death toll by over 300,000. That's 300,000 thousands deaths that could have been avoided. A random quack may only affect the lives of a small group of people. When a government makes bad decisions hundreds of thousands of people can be affected. The documentary The Price of Denial produced by the news agency Health-e gives the startling details of what happened.

The evidence for HIV and AIDS is immense. Yet sites like AIDSTruth.org have to have detailed counter evidence against denialist myths. And that long page is just a summary of the myths with links to more detailed information.

What's depressing is the amount of effort and energy required to fight these myths. If a fraction of the energy put forth by those spreading the myths and those countering them was put into prevention programs that work, into treatment projects with proven drugs and therapies, and into basic research we might be much closer to finding an effective way of dealing with AIDS. Maybe even finding a cure.

In case you think that medical science isn't trying new approaches and looking at radical (yet plausible, and testable) ways of dealing with AIDS then the article Can AIDS be Cured? is a wake up call. There are many different approaches being tried. Some are more promising than others. Keep in mind that as the article says:

There is no cure for polio, hepatitis B, measles, chicken pox, influenza, and a long list of other viruses. Though the immune system and drugs can ultimately defeat many viruses, they are notoriously difficult to stop before they cause damage--especially a virus that integrates itself into chromosomes and can lie dormant for years.

Maybe there isn't a complete cure on the horizon in the short term. Maybe prevention of transmission and better treatment for those who are infected is the best plan for now. I'm just glad researchers are working on the problem from many different angles and with many different approaches. All without denying the underlying science.

Medical Controversy: Anecdotes are Important Too

I'm sure that we all have personal medical stories to share. Hopefully good stories and not just bad ones. Did your uncle survive into his 90s while smoking a cigar a day? Did that young doctor in town do something awful to Elizabeth in accounting? We all have a collection of tales.

When it comes to determining what is right or wrong with medicine anecdotal evidence is considered weak. Mainly because the more evidence and the more cases and the more numbers involved the stronger any correlations and links you can find. Smoking is linked to certain cancers and diseases. Not everyone who smokes will get those diseases. They're just much more likely to get them.

But anecdotes aren't unimportant. Every trend starts with the first observation. A few anecdotes may lead to the collection of much stronger evidence.

Plus anecdotes can be incredibly moving, personal, and powerful. Empathy is a powerful force.

My Brain Forgot... by Lucy Ambrose is her story of a back injury that spiraled out of control. It describes how a 'simple' injury turned into a dark nightmare and how she eventually got help that worked. Stories like Lucy's may not be representative. Her story may not reflect what happens to most people. It does however tell you what happened to her specifically.

For even though a single anecdote is not a sound basis for changing medical policy it may help to remember that each person will end up with their own story. We are going through our own story of illnesses and issues and of diagnoses and treatments.

Each of us is an anecdote in the making.

Medical Controversy: Why Haven't We Beaten Cancer Yet?

In 1971 President Nixon initiated what was called The War on Cancer. The hope was that with more research the cause and cure for cancer would soon be discovered. Almost 40 years later the war is still being fought. Why haven't we beaten cancer?

War against cancer has more than one target in the Washington Post gives an overview.  Cancer is more complicated than we thought. Dr. David Gorski gives a more detailed look into the problem in The complexity of cancer: a science based view.

Dr. Gorski's article gives an overview of some of the talks at the annual meeting of the American Association for Cancer Research (AACR). At times Dr. Gorski gets into technical details but don't let that deter you. There are a few take home lessons. One is how complex the problems really are. There aren't necessarily simple and easy answers. He specifically points out the difference between science's approach to the problem and the easy (and wrong) answers given by quacks and practitioners of unscientific medicine. So much of what's peddled as miracle treatments and simple approaches is just plain wrong. What may sound good at first may not actually make much sense when looked at in detail. For example he writes:

Dr. Coussens’ talk is fascinating for what it revealed about the immune system and cancer. How many times have you heard “alternative medicine” believers and promoters brag that this nostrum or that potion “boosts the immune system”? As we’ve said before here, it’s a meaningless claim, because sometimes boosting the immune system is bad, as in autoimmune diseases. In cancer, it’s long been known that inflammation, particularly chronic inflammation, can lead to cancer.

There has been great advances in cancer treatment over the last 40 years. Our understanding of cancer has grown as well. For all the advances and new knowledge it now looks like the war on cancer will not be over soon.