First Nations push for political action

Once again my apologies for not posting on time this morning. I am still working through a backlog of stuff at home and at work that has piled up as I’ve been on the road. I will endeavour to have these posts up on time for the rest of the week, but my ‘free time’ is not yet my own. I really do appreciate your patience.

Despite lack of evidence to the contrary, I am acutely aware of the fact that this blog only really ever discusses racial issues along black and white lines. I don’t mean that I look at these issues as clear right and wrong, but that I tend to focus on issues that are centred on black and white people. This isn’t an accident – this particular divide is the one I am the most familiar. Growing up the way I did, the black/white dichotomy is the one that has been the most apparent to me my whole life. My bias towards this issue is not simply borne of familiarity, but from recognition of the fact that I can comment on these communities as an insider. It is not so for other racial/ethnic communities in Canada, and in the interest of letting people tell their own stories I often watch pitches go by when I think I could do more harm than good if I swung at them (N.B. – the last time I played baseball I was in high school).

I have, for a few years now, theorized that there is much that unites the black and First Nations communities in North America. Despite our disparate histories, First Nations face many of the obstacles that black people faced in the mid-20th century. Public perception of First Nations people is often negative, and their problems are blamed on their own lack of “personal responsibility” rather than a product of the evident systemic abuses that stretch back through history. To be sure, the problems facing First Nations communities are unique, and so are their solutions, but there is enough commonality in my eyes to justify feeling a sense of kinship.

None of this is to say that I feel qualified to express an opinion on issues facing First Nations communities, only to say that I react viscerally when I read things like this:

Nearly three-quarters of first nations in Canada rely on water systems that are classified at a medium or high risk of not meeting safety standards, a national study finds. The independent report examined the drinking water and wastewater systems on nearly 600 first nations. Just over one-third were classified in the high risk category.

You wake up in the morning, you brush your teeth, maybe you take a shower. You cook some breakfast, you head to your job or your school. No big deal, happens every day, for millions of Canadians. Except for those Canadians that don’t have access to clean water. It’s chilling to think about how fundamental access to clean water is. For the vast majority of Canadians, we live in circumstances that allow us to take clean water for granted. So much so, in some cases, that we actually think it’s reasonable to look with disdain on the water we do have and pay billions of dollars a year for a bottled version of the same product.  Not so if you’re a member of a First Nations band.

Does everyone remember the major crisis over water safety in Walkerton, Ontario a few years back? We were all dumbfounded, myself included, to learn that regulation had slipped to such an extent that in one of the very few countries in the world that can really describe itself as “first world”, people were dying of contaminated water. There can be no safety, no development, no security, and certainly no trust in the government, when there is no access to clean water. It’s fundamental to how we live. And apparently, we’ve been dragging our heels on providing it to a particular group of Canadians. Encouragingly, the problem seems to be one of capacity – lack of training in how to use a water system – than one of contamination. I call this encouraging because it is a clear problem with a clear and simple solution, something that is usually quite rare.

The larger issue, however, is the level of inattention with which we (as non-Aboriginal Canadians) treat our First Nations sisters and brothers. I am cynical, yet hopeful when I see signs that the story might be changing for the better:

Canada’s aboriginal leaders are calling for co-operation between the premiers and the federal government on social and economic issues. Aboriginal communities need help coping with emergencies such as flooding and forest fires, the leaders said at talks in Vancouver, where provincial and territorial premiers are holding their annual Council of the Federation meetings. In prepared remarks to the premiers, Shawn Atleo, national chief for the Assembly of First Nations, called the issue of crisis and emergency management “urgent,” given the flooding and fires in 2011 alone.

I don’t know much about Shawn Atleo as a person, but his and my politics when it comes to these issues are very much in line. He is not afraid to point out failures in the system, but his proposed solutions are not simply “more funding”:

The communities need resources and training in emergency management along with long-term security plans so they can better respond to a crisis, Atleo said. This would include “major work,” like permanent dikes in areas prone to flooding, road upgrades, and evacuation centres. Temporary housing would also be required for those forced out of their homes.

What he is talking about is a level of response that is commensurate with the level of crisis, which sounds completely fair to me. Above that, though, he’s pointing out the need for training and capacity building – help us help ourselves. That has to be the approach with any marginalized community – not because it’s politically expedient but because it is the only long-term solution to the problems that face those communities. Where I step off the conservative talking points is that I think that the government should be more engaged in this process – not less.

To bring it back to my original point, I am uneasy about making pronouncements about what is best for First Nations communities in Canada. God knows they’ve experienced enough cases of outsiders coming in and trying to dictate their best interests. I will, however, never hesitate to stand up and shout my disapproval when my government fails to protect my fellow Canadians, or my approval when someone articulates something that I think is a good idea. Issues facing the minority only start to get fixed when they are seen as problems by members of the majority.

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Health care; we still live in the world

So as you may have deduced from yesterday’s marathon post, I am back from my trip. While I spent the first week in sunny and beautiful Amsterdam, I spent the second week in sunnier Toronto – my old home. This trip wasn’t all pleasure though; in fact, I was traveling for business. I don’t talk about this on the blog often, but I work as a health economist. Basically, health economics is a branch of research concerned with resource allocation and decision-making in health care. We look at alternative methods of health care delivery, technologies, programs, etc. and apply the scientific method to work out which options are worth the investment of time, energy, and (ultimately) money. The goal, at least for me, is to maintain the public health system so that it is viable in the long term.

The biggest problem with public provision of health care (or really, any kind of health care provision) is that there are a finite amount of resources available. At every turn, we are confronted by the fact that while costs of care are climbing steadily, the amount of money available to fund treatment can’t even come close to keeping up. At some point, while we’d like to see that everyone gets all the treatment she/he needs and would like, we have to draw a line.

Sometimes we get in our own way a little:

A B.C. woman with a rare, serious skin disease can’t understand why the province refuses to cover a one-time treatment that would likely put it into remission — but will pay for much more expensive treatment that only helps relieve her symptoms…

Dermatologist Gabriele Weichert wrote to PharmaCare, recommending a one-time treatment with Rituximab instead. The drug is approved for treatment of rheumatoid arthritis and other conditions, and Weichert said the drug has also shown much better results in treating pemphigus.

So here it seems there is a clear-cut case where government bureaucracy is getting in the way of medical decision-making. We’ve got a disease, a drug that treats it (at lower cost, no less), and a bloated, inefficient system that won’t cover the cost of the medication because it’s not on “the list”. Pretty shocking, right? Well, until we read this:

A spokesperson for PharmaCare told CBC News approval was denied because Health Canada has yet to approve Rituximab for treatment of pemphigus. Using it to treat that condition is considered “off-label”.

Rituximab is part of a class of drugs called ‘monoclonal antibodies’ that basically mimic the body’s own immune response to foreign proteins. When a strange substance (in immunology, called an “antigen”) enters the body, it is recognized by the white blood cells. They form a chemical impression of the proteins that make up the antigen and begin creating antibodies. Those antibodies coat the foreign protein, signalling other blood cells to envelop and destroy them. Sort of like adding bacon bits to an otherwise-unpalatable salad. Monoclonal antibody drugs do this, but for tumour cells (which are not recognized as ‘foreign’ because they come from the body’s own tissue).

As you might suspect, these drugs are typically used for cancer. Using rituximab for skin disease is indeed an ‘off-label’ usage, and those can be potentially disastrous. The kind of cowboy prescription involved in giving treatments for which efficacy is not established can have potentially fatal consequences, as we’ve seen in the furore around so-called ‘Liberation Therapy’ for multiple sclerosis. The problem here is that there is likely never going to be the kind of trial that we would consider sufficiently strong evidence to justify covering rituximab for use in this setting – the disease is just too rare.

So why not just give it anyway? It’s medicine, right? What possible harm could there be in prescribing it? Well… how about death?

Four people with rheumatoid arthritis have died after being treated with Rituxan, says the drug’s manufacturer, which has issued safety information about the medication in conjunction with Health Canada. None of the deaths caused by a severe infusion-related reaction occurred among Canadian patients, Hoffmann-La Roche Ltd. said in a release.

All drugs have potential adverse effects, and some of those effects might be fatal. Doctors know this, which is why they take such precaution with filling prescriptions (well… that’s debatable I suppose). Giving a medication for an indication that is unknown may result in a miraculous cure, but it might also kill the patient. Because of the vast divide in knowledge between the doctor and the patient, and the unique level of trust that characterizes that relationship, physicians must be extremely careful in the advice they give. When the stakes are high, patients will often leap at opportunities for cures without really understanding all of the variables involved.

This is the tightrope that the health care system must walk every day. If they adhere to the rules and regulations too strictly, they run the risk of undertreating patients, or promoting practices that are inefficient and ineffective. Relax the rules too much and they run the risk of seeing patients die from inappropriate or experimental treatment at the hands of well-intentioned but ultimately misguided care providers. There are horror stories on either side of this divide, which can be (and are) milked in order to shift policy and public opinion.

There is no perfect solution to this set of problems. Different countries employ a variety of different approaches to find a way to maximize patient autonomy whilst simultaneously protecting them from the consequences of their own ignorance. Whenever there are failures, they should be brought up and discussed. The key to any system is one that is not so intractably bound by regulation that it cannot respond to times of crisis (like in the treatment of pehphigus), but not so flexible as to undermine its own ability to safeguard its stakeholders.

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Canada’s third world nations

Remember when Katrina hit, and the underbelly of American neglect was exposed to the world? The fact that millions of people in the richest, most prosperous country in the world were living in squalor was the subject of much consternation and concerned tongue-clucking. The fact that the vast majority of people affected (and subsequently neglected) by the disaster were from a racial group that has historically been abused and continues to be patronized or ignored by the powers that be also didn’t escape notice. We here in Canada were comfortable, perched atop our high horse, thanking the heavens above that we were simply better than that:

Conditions in one Haida Gwaii hospital are so bad that chemotherapy drugs are mixed in an outdoor wooden shed and the morgue is housed in a temporary trailer. Not only that, but the regional hospital district says water needs to cleared from the main building’s roof by hand and physiotherapy sessions need to be conducted in an old greenhouse.

The problems at the 61-year-old Queen Charlotte General Hospital and Health Centre were detailed to the NDP in a letter from the North West Regional Hospital District, sent in mid May. On Tuesday, the NDP raised the issue in the legislature, pressing the government on why it has let the facility deteriorate to such a low level.

I am not a popular entertainer, and I don’t have an internationally-televised live broadcast to exploit. All I have is this humble blog and my microcelebrity (I got Pharyngulated yesterday! Sniny!) to make this statement: Christy Clark doesn’t care about Native people. Neither does Gordon Campbell, under whose watch all of this happened, but he’s gone. For those readers outside of British Columbia, I should probably explain. Christy Clark is the current premier (akin to a governor in the United States, or a First Minister in many other parliamentary democracies) of British Columbia, having recently been elected after the resignation of the disgraced Gordon Campbell.

Health care is administrated by the provinces, meaning that the premier is responsible for ensuring the funding and oversight of health care facilities meets a provincial standard. It is up to her (or him) to ensure that resources are properly allocated, which means that the extremely sub-standard conditions of the Haida Gwaii (formerly Queen Charlote Islands) are her responsibility.

If this were an isolated incident in which political powers neglect First Nations communities, then I might be content to shrug it off. Shit happens, and sometimes things get missed. But for some reason (more on my suspicions on what that reason is later) it is always Native communities getting a shipment of body bags instead of health supplies; it’s always Native people being the subject of NIMBY protest, and because they receive taxpayer support, everyone with an internet connection thinks that they’re qualified to offer an opinion on the issue, which usually contains at least one racial slur (prefaced by “I’m not racist, but…”) and an admonishment to “get off their asses”.

I’ve spoken before about the need for effective political opposition, and this is exactly what I was talking about. Instead of running around trying to score cheap political points and play games with the debt ceiling, the provincial NDP has found an area where the government is slacking, and has brought it to the forefront. My cap is tipped to them, at least on this issue (although I am no fan of the provincial NDP generally). However, this issue is not simply relegated to the provinces:

Announcing the release of the joint work plan, INAC Minister John Duncan noted that “Canada and First Nations have an enduring historic relationship based on mutual respect, friendship and support.” However, the 2011 June Status Report of the Auditor General of Canada (AG Report) tells a different story. Chapter 4 of the report highlights the ongoing appalling conditions on First Nation reserves, the stark contrast between conditions of First Nation reserves and other communities and the federal government’s repeated failures to address adequately the deplorable conditions on First Nation reserves.

The report itself is pretty chilling, detailing the several ways in which the federal government has failed to take meaningful action on issues of basic necessities to First Nations communities across the country. Their approach is disorganized, slipshod, and shows a complete lack of commitment to actually ameliorating the problems faced by First Nations people. And therein lies the problem: it is convenient and easy to blame Native people for their lack of success, but when the support they receive from the federal government is so woefully inadequate (compared, say, to the amount that municipalities receive), one cannot simply chalk these problems up to being lazy. We’re talking about thousands of people who don’t have clean drinking water. This isn’t asking for “a handout” or special favours – this is ensuring that our citizens have what we would describe as the bare necessities to live.

So, if bringing the conditions of Haida Gwaii to provincial attention represents a successful official opposition, then the complete lack of progress and the widening disparity between Native Canadians and everyone else represents an appalling dereliction of duty on the part of the Liberal Party of Canada (with whom I am aligned) and the New Democrats. Government has a duty to look after the interests of its people, and the opposition has the responsibility to take the government to task when it fails in that duty. This failure is just as appalling as what happened in New Orleans – more so, because it’s happened over the stretch of several years.

Shawn Atleo, National Chief of the Assembly of First Nations, describes the problem in much the same words I would use:

This isn’t about assigning blame or pointing fingers – it’s about accepting responsibility and saying “my brothers and sisters need my help.” And while Mr. Atleo wasn’t at liberty to say it, I will put into words the general feeling I got from his discussion: First Nations people are treated like the ‘niggers’ of Canada, and we have work to do if we care enough to change that.

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Health care ‘rationing’: Canada vs. the USA

Once again, and I hope you will forgive the digression, I’d like to talk a bit about something that has absolutely nothing at all to do with the usual topics of this blog. This topic is one that is more in line with my professional interests rather than my personal ones (if those two can be really thought of as distinct – I chose this career for a reason). As I may have intimated previously, I am a passionate believer in public provision of health care services.

While private-sector advocates often point to the increased competition and innovation possible in a for-profit delivery model, they neglect two important factors in their argument. First, health care is consumed almost entirely at a point of crisis. People walking into a hospital are not really in a position to “shop around” – they have an acute need and are therefore far less capable of making a dispassionate consumer choice. Second, the only way a for-profit health care delivery system could work is if it is either stringently regulated (a position that is wildly unpopular) or if we just stopped caring if sick people get gouged by unscrupulous corporate interests. Private delivery has the interest of maximizing profit, and while increasing efficiency is one avenue of doing that, companies have figured out that extra billing and price fixing are much more lucrative ways of turning a profit.

The debate over health care reform in the United States has introduced a new word into the public lexicon: rationing. Basically, rationing refers to the belief that under a publicly-administrated health care system, only a certain level of care would be available, and if you want more than that, it’s tough shit. It is from this idea (and an intentional misrepresentation of ‘end-of-life counselling’) that the now-infamous “death panels” became a talking point. People became outraged at the idea that the government would step in and say “grandma can’t have that hip replacement, because it’s too expensive”.

First, here’s what’s true about that argument: a publicly-provided health care system will introduce rationing. There will be medications, technologies and procedures that people will not have access to because of lines drawn by government about what is acceptable care and what is excessive.

However, there is already rationing in the American system, and it happens all the time. Any health care system will require rationing – the demand for health care services will always exceed the amount of available resources. Our concepts of disease and health are plastic, and shift as new innovations are made and the understanding of the human body increases. In order to understand health care we must first understand that there is no method of delivery that is free of material constraints – the question then becomes “how can we provide the greatest level of health care with what we’ve got?”

Canada’s approach, and indeed that approach of most industrialized nations that have publicly-funded health care delivery, has been twofold. First, a list of services is drawn up. The Canada Health Act allows for all “medically necessary” services – a definition that is intentionally vague. This imprecise wording means that the number of services that are provided can expand and contract based on need and resource availability. If you have a specific medical need that is not listed – for example, you have a rare disease or want a type of drug that is not covered – then you will have to pay out-of-pocket for it. Obviously, this is non-ideal, but by delineating it this way and drawing up the list in such a way that covers the majority of health care needs, the Canadian system can provide some form of care to everyone, even if it is not the absolute best.

Second, the Canadian system rations in terms of accessibility – the notorious waiting lists. Given a finite level of capital resources (and I am putting human resources on this list as well), demand may fluctuate in such a way as to exceed the availability of the system to deliver services immediately to all people. For example – if you have the ability to do 10 bone scans a day and 11 people walk in the door, 1 person is going to have to wait until tomorrow (when, hopefully, only 9 people will come in). These waiting lists can be managed with varying levels of efficacy, and we’ve gained some ground in recent years. The fact remains, however, that people cannot necessarily get immediate care for all health conditions (although acute and emergency needs are always prioritized and get attention reasonably fast).

Rationing in the United States is far less publicized, and far more dangerous. Given the same situation (finite resources, high demand), the USA’s system handles rationing by artificially reducing demand by curtailing access. Whereas there may be the same proportion of people requiring care, the United States simply does not provide care to certain people. By knocking people off the rolls (prohibitively high cost of insurance, de-insuring people for a variety of reasons, making coverage contingent on employment), the system ensures that everyone who can get care gets it quickly and to the extent they want/can pay for.

The reason why I call this type of non-explicit rationing more dangerous than the Canadian solution is because the consequences are far more dire for individuals and the economy. For individuals, because losing health coverage (or never having it in the first place) means that people are unable to get care for anything but emergency conditions. For the economy, because those emergency conditions are far more expensive to treat than they are to prevent, and because medical bankruptcy has a ripple effect through the economy at large. This is to say nothing of the reality that public provision is far cheaper than for-profit schemes (despite what free-market advocates would have us believe).

Conclusion

While “rationing” sounds like a scary word, people need to realize it is the inevitable result of a level of demand that is always greater than available supply. Rationing is no more rare in a for-profit system than it is in a publicly-funded one; the only difference is the method of rationing we choose to use. The Canadian solution is to provide services up to a certain level with some barriers to access (waiting times). The American solution is to curtail the number of people who are able to access any level of care. These solutions have different effects, and for reasons of both utilitarian ethics and personal/economic outcomes, the Canadian approach is superior.

Tough on crime

One does not have to plumb the depths of political rhetoric very far to expose the unbelievable hypocrisy and outright falsehood lying just beneath the varnished surface of its truisms. The right to publicly-administered health care is not slavery. Republicans are not better on the economy. The Harper Government™ is not tough on crime:

The Supreme Court of the Canada will hear arguments this week that will likely determine the future of Vancouver’s supervised injection site, known as Insite. The court will have to decide whether Insite is a health-care facility under the jurisdiction of the B.C. government, and whether closing it violates the rights of impoverished drug addicts.

Supporters, including the province, say a body of peer-reviewed studies has proven Insite prevents overdose deaths, reduces the spread of HIV and hepatitis, and curbs crime and open drug use. But the federal government rejects that evidence, arguing the facility fosters addiction and runs counter to its tough-on-crime agenda.

Those of you not familiar with Vancouver’s safe injection site should read Ethan Clow’s excellent analysis of the issue. I will do my best to summarize. As we learned from the United States in the 1920s (and from our own failed national experiment), prohibition is a really stupid way of trying to stop people from doing something. There are generally two ways of preventing an unwanted behaviour – enforcement and outreach. Prohibition puts the emphasis firmly into the first camp by creating stiff penalties for engaging in the unwanted behaviour. With respect to drugs, this means punishing those that use and sell drugs.

One of the biggest looming issues facing Canadians with the Republican North majority is the introduction of the omnibus crime bill. Basically, this bill calls for money to be funneled into the prison system, including the construction of new incarceration facilities. Of course, this comes at a time when crime rates are in fact dropping, but the RNP has a solution for that too – make more things crimes! Mandatory minimum sentencing is one tool in the arsenal of a prohibitive government – take legal leeway out of the hands of judges and force standard jail terms regardless of the severity of the crime.

The problem, as anyone with even the slightest insight into human behaviour and psychology will be able to tell you, is that people are generally going to do whatever they want if they don’t think they’ll get caught. When it comes to drugs (especially drugs like marijuana with negligible personal risk due to use), people will always want to get high, and unless you have cops on every street corner and outside every window, people will find a way to do just that. While drug use may be a bad thing (I think the issue is more nuanced than that, but let’s just grant the assertion for a moment), if your goal is to reduce drug use, your policies should be targeted at doing just that.

If you don’t think that drug use per se is bad, but rather the consequences of drug use (addiction, self-harm, overdose, loss of control) are bad, then you would likely favour an approach known as “harm reduction”. Basically, the idea is to find a way to allow people to do what they want but to minimize the negative repercussions. For example, alcohol is regulated in such a way as to minimize the damage – only licensed facilities may dispense it and staff must be trained to recognize intoxication; only people of a certain age may purchase it; purity of ingredients is inspected by the government – people still drink, but in a way that is much safer than it used to be before those regulations were in place.

In the case of Insite, the negative health consequences of intravenous drug use are mitigated by providing clean needles (that are not infected with HIV) and a safe place to get high. Needles are disposed of safely (rather than in the streets, where any number of things can and do happen to them), and overdoses are managed by professionals. It is certainly not ideal – ideal would be to have zero drug users – but it does save lives, reduce infection rates, and actually saves the city a lot of money. It is the kind of local control for a local problem that small-government conservatives and libertarians should applaud.

Not so the Republicans though. They claim to be “tough on crime”, but what they actually are is litigious on crime. They endorse laws that expand the role of the federal government to interfere in municipal matters and take discretion out of the hands of judges and place it in the (completely incapable) hands of elected officials. This is the kind of behaviour, of course, that Conservatives (note the capitalization) constantly accuse Liberals of; however, it’s only wrong when it’s something Conservatives don’t like. When it’s for their own cause, there is always some bullshit rationalization.

I have a friend who is a prison guard (actually I have a few, but I am talking about this one in particular) who was overjoyed over the RPN majority election. His rationale was that there would finally be attention paid to the state of the prison system, and no more coddling of criminals. Far be it from me to question his expertise in terms of what the inside of a prison looks like – he’s in one every day and I haven’t even visited. However, I think his assessment is short-sighted. The omnibus crime bill creates more criminals, it does not reduce crime. If anything, it statistically increases crime (convenient, when you have all these new prisons to fill) by creating new criminals. It does not reduce the harms caused by criminal behaviour, nor does it do anything to reduce the true underlying causes of criminal behaviour (income disparity, lack of opportunity/education, living conditions).

Both the political left and right undoubtedly want to reduce the incidence of crime. It is in nobody’s best interest for there to be more crime. However, one side of the political debate has chosen a method that is proven not to work, and does so in the name of being “tough on crime”. Nothing could be further from the truth, and we are all about to learn this first-hand.

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“Liberation Therapy” saga continues

A while back, near the beginning of this blog, I brought to your attention a new potential treatment for Multiple Sclerosis – a severe degenerative disease. The treatment, pioneered by an Italian doctor by the name of Zamboni (I couldn’t make this stuff up – I’m not that creative), is referred to as ‘liberation therapy’, and involves using venous angioplasty (balloons) to clear blockages.

I expressed my skepticism about this procedure at the time, saying that I generally doubted the claim, simply because there’s little connection between the circulatory and nervous systems. It seemed improbable to me, but I was happy (and encouraged others) to wait and see what the evidence says – what happens when we observe patients under controlled circumstances with adequate followup?

Well, it seems that this happens:

People with multiple sclerosis may show blocked neck veins as a result of the disease rather than as a cause, a large study published Wednesday suggests. The findings cast doubt on the theory that blocked or narrowed veins are a main cause of MS, study author Dr. Robert Zivadinov of the University of Buffalo said. The findings published in the journal Neurology were consistent with thinking that the condition — also known as chronic cerebrospinal venous insufficiency, or CCSVI — is more common in patients with multiple sclerosis but not to the degree first reported by Italian doctor Paolo Zamboni.

Please don’t mistake me – I get little pleasure from being right in this case. People close to my family have lived with MS, and I would much rather be wrong if it meant that people could undergo a simple medical procedure and achieve relief from their symptoms. However, the facts are the facts. In this case, the facts do not support the claim that blocked veins contribute to MS, and there is consequently no reason to suspect that alleviating the blockages will have any effect on MS patients.

This study is, perhaps, not the definitive ‘smoking gun’ that liberation therapy is not effective, but it certainly does cast doubt on the original hypothesis of its efficacy. One of the chief components of the scientific method’s accuracy is the ability to reproduce results in a variety of locations. If some event only occurred once, and cannot be observed by others performing the same procedures as elicited the original event, then serious doubt is cast on the original observation. It is far more likely, in a case like this, that there was some flaw in the original observation. This is a good thing – it prevents us from making decisions based on bad information.

However, sometimes we are hell-bent on making those decisions no matter what the evidence says:

The New Brunswick government says it will still help multiple sclerosis patients gain access to therapy to open narrowed neck veins, even though a new report on the procedure is raising concerns. New Brunswick Health Minister Madeleine Dube said that could be debated in the medical community for some time. “But while this is being researched and debated, those people still need support and we are committed to that,” she said Thursday.

There is nothing strictly incorrect about Minister Dube’s statement; however, she and I do seem to have a disagreement over what the word ‘support’ means. Under my definition, it means giving sick people the best care possible, guided by scientific evidence and good practice. Under her definition, it means giving patients whatever they ask for to make them feel better. While I am all for making people feel better, I do not subscribe to the philosophy that cutting people open to elicit the placebo effect constitutes responsible medical care.

For all intents and purposes, there is no reason to suspect that liberation therapy elicits anything stronger than a placebo effect. For every anecdote that states an improvement in symptoms, there is one that talks about how the symptom relief has faded over time. And among those anecdotes, there’s more from people who keep chasing the bad medicine like an addict fiending for a fix:

The monitoring is for Canadians such as Caroline McNeill of Langley, B.C., who travelled to California to have her neck veins reopened using balloon angioplasty. She has had the procedure twice before, and noted lingering benefits such as feeling less tired. “The numbness on my fingers has started to come back again, and I have really bad dizziness and vertigo,” McNeill told her doctor. She plans to return to Newport Beach in Southern California for a stent later this month.

It doesn’t surprise or confound me in the slightest that people who experience a temporary benefit would go back to the well, so to speak, and give the therapy another try. When the current regimen of therapies are only partially effective and carry a whole host of adverse effects, it’s completely reasonable to leap at any alternative. This is why these ‘alternative therapies’ (which is a really stupid name) are so dangerous – they make wild promises that offer benefits that have no scientific backing whatsoever. The people to whom these promises are made are often desperate for any relief, and will try just about anything no matter how dangerous it is.

This is why people who advocate “health freedom” make me so angry – there is no way you can expect people to be dispassionate and conscientious consumers, weighing the plusses and minuses of different options, when the stakes are so high. People’s lives and day-to-day well-being hang in the balance, and they’ll jump at any chance to feel better. This is why our policy should be based on scientific evidence, not the whims of politicians and the desperation of sick people.

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Patient-view vs. provider-view health care

This will be somewhat of a digression from the usual fare here at the Manifesto. While I moonlight as a commentator about religion, race and free speech, the bulk of my daylight hours are spent applying my skeptical gaze to the Canadian health care system. The story I want to talk about today doesn’t really have much to do with the regular topics here, but I found it interesting, and last time I checked this was my blog 😛

Health care is a complex and multifaceted beast that has unique challenges. In many senses it can be thought of in terms of a business – patients are ‘customers’, health care practitioners are ’employees’, and health is the ‘product’ that you are ‘selling’. This analogy breaks down pretty spectacularly for reasons I will go into later, but for the time being it is helpful to think of it as a business. What would you call something like this?

With the NHL playoffs just around the corner, the College of Physicians and Surgeons of B.C. has issued an advisory to the province’s 11,000 doctors, reminding them that talking about anything other than the task at hand in the operating room is unprofessional and inappropriate. The matter arose after the college received a complaint from a patient who heard his surgeon talking hockey with the scrub nurses during the elective procedure for which he was given a local, not a general, anesthetic.

That’s shitty customer service, right? Imagine you went to the bank, and while they were helping you at the counter, the tellers were talking about the latest gossip about Justin Bieber? You’d be annoyed with their level of unprofessionalism, to say the least. While your business might be completely routine for the tellers, so the point where they didn’t really have to concentrate much to do it, it’s still rude to chat about non-related matters while you’re providing a service to your customers.

This issue highlights an interesting dichotomy in the provision of health care – that of ‘patient-view’ and ‘provider-view’ types of administration. In patient-view administration, the goal is to provide the highest quality services to each patient, and to construct the system in such a way as to maximize the ease that patients move through the system. Provider-view administration seeks to maximize the efficiency of the system, such that the largest number of patients can be served as quickly as possible.

It brings to mind one of my favourite examples of what I call “first-floor/third floor problems”. Picture a hospital that routinely sees patients in the radiology department. In order to streamline the process, patients are routed through offices on the first floor when they come in the door. This ensures that people don’t mistakenly go to the wrong department, and that all of the relevant information is available about each person before they see a doctor. Very efficient, right? Well imagine that the third floor also houses several inpatient beds. A person receiving inpatient care on the third floor that needs a scan needs to go to the first floor for processing, and then back up to the third floor to receive their scan. From a patient-view perspective, this is a huge waste of time and resources, but from a provider-view perspective it is an unfortunate consequence of something that is otherwise a good system.

Similarly, we have an example here of surgeons who, from a provider-view perspective are providing a high-quality service in a quick and efficient way. These are specialists that can perform routine operations with a nearly-perfect success rate, and their chatting does not affect that success in any meaningful way. However, the individual patient doesn’t give a rat’s posterior – she wants the undivided attention of her health care provider.

The part that makes this issue even more interesting is the level of emotional investment in an operation versus at a bank counter. A rude teller is annoying, but even if they screw up it’s no big deal. A distracted surgeon is potentially fatal to the patient, a fact that is made even more urgent considering the expected power dynamic between patient and physician. This is where the business model breaks down – health care is a need that has components that are not within the comprehension of the vast majority of people (including those involved in providing said care). To expect market forces to operate in the same way as they would in a bank (go to a different teller if you don’t like the one you’ve got) is simplistic, because it neglects the phenomenon of need. This will undoubtedly be the topic of a post to follow, but I am butting up against my word limit already and it’s too big to flesh out in the space remaining.

There is a careful balancing act of patient- and provider-view arguments that is required to deliver high-quality and sustainable care. Patient-view care is incredibly resource-intensive to manage, as it requires the consideration of each individual patient’s unique situation. Provider-view care can neglect the non-medical welfare of the patients as they move through the system, and can be quite myopic when it comes to the satisfaction of users of the health care system, thus undermining public support for the system.

In my own small way, I look at this issue from a particular angle and try to influence policy that will result in an equitable and sustainable mix. It is precisely because these issues are so difficult to put a precise handle on that I find them so interesting.

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Let’s call this what it is…

Those accommodationists among us (I am not calling them “diplomats” here – there is nothing diplomatic about being a coward) will say that one ought not to use mean words or phrases against our opponents. Rational discussion is, they say, based on both sides maintaining a respectful stance – a stance which is impossible if people use words or phrases that put the other side on the defensive. When confronted, people will put their fingers in their ears and refuse to hear your side.

If the protests in the Arab world have taught us anything, it’s that the accommodationist position is full of shit. Standing up and calling out your opponents is an effective method of achieving change, provided you can mobilize those who agree with you. This has long been my suspicion, but it’s nice of the Arab world to prove it for me.

So, in the spirit of not pretending that bullshit arguments have merit in order not to offend the bullshitters, I invite everyone to call these anti-Muslim “hearings” what they are: straight up racism

A U.S. congressional hearing on homegrown terrorism has been labelled “shameful” and “un-American” by prominent Muslim leaders. A Republican-led Homeland Security committee began hearing testimony Thursday in Washington on radicalization in the U.S. Muslim community. Representative Peter King, the New York Republican who organized the hearing, has stirred controversy by accusing Muslims of refusing to help law enforcement with the growing number of terrorists and extremists.

Muslim Americans, according to Peter King, aren’t licensed to simply exist as law-abiding citizens. No, that’s too good for ‘those people’. They also have to help law enforcement do its job, I suppose by acting as sleeper agents. You know, just like how white Christians flocked to aid law enforcement crack down on anti-abortion terrorist groups. Oh wait… that never happened, did it? You know why? Partially because it’s not a group’s collective responsibility to do law enforcement’s job for them, partially because terrorists are a tiny fraction of the overall population of white Christians, but also because they’re white! White people don’t get scapegoated – it’s in their contract.

I wish I could accuse Mr. King of being shockingly ignorant of American history, but I am not so sure that he doesn’t know who Joe McCarthy was and what his legacy is. Considering the number of people making the explicit comparison between the two, I will simply take a step back now that I’ve planted the seed and let you read on your own (if you care to).

If this were a more popular blog, and we had more American Conservatives(tm) commenting (or indeed, any American Conservatives), I’m sure I’d be flooded with comments like this one:

Nobody is “targetting” the entirety of American Muslims. That being said, an overwhelming majority of terrorist incidents in the United States within the past two years have been perpetrated by Muslims. These are FACTS – not biases or racist screeds – duly recognized by Congress, and the executives within the Obama administration.

It’s not racism, guys! Really! It’s just that those durn Mooslims keep blowin’ stuff up! Well, unless you actually bother to count:

But even if it was Muslims who are predominantly committing acts of terror (and it isn’t – I can’t stress this enough), that doesn’t empower Mr. King to put the Muslim community on trial for those acts. If Mr. King was really interested in getting to the bottom of this issue rather than just demonizing a minority group, he’d be inviting experts and members of the community, talking to law enforcement specialists, consulting statistics.

But he’s not:

Consider, for example, that so far at least, King’s witness list does not contain the name of Charles Kurzman, a professor of sociology of the University of North Carolina. A non-Muslim, Kurzman has produced a report for the university’s Triangle Centre on Terrorism and Homeland Security that actually uses statistics and facts to examine the question posed in the report’s opening paragraph: “Are Muslim-Americans turning increasingly to terrorism?” Kurzman examines things like the number of Muslim-Americans who perpetrated or were suspected of perpetrating attacks since 9/11: 24 in 2003, 16 in 2006, 16 in 2007, a spike of 47 in 2009, and a drop to 20 in 2010. A total of 161 over nearly 10 years.

In a few cases, Muslim groups have even turned in provocateurs urging jihad who turned out to be undercover police agents.

This isn’t a concerned citizen looking to find the solution to a serious problem – this is an opportunist who is cashing in on the rampant anti-Muslim sentiment of the populace to make hay and brand himself as a patriot. Considering his hypocritical stance on state-sponsored terrorism – defending the IRA in the 90s when they were perpetrating acts of terrorism in Ireland – it’s patently obvious that Mr. King’s motivation here is to demonize the “other”. In this case, in this day and age, that “other” is the Muslim community.

And why do I care (and, by extension, why should you)? I’m certainly no friend of Islam, and am suspicious of all religious people, particularly those whose religion requires extraordinary levels of piety and compliance with arcane rules. Why should I defend people I disagree with so vociferously? First of all, I care because it’s the right thing to do. Innocent people are being scapegoated by the U.S. government, and that’s a violation of their rights. Second, any time a minority group is made an example of, every person should become immediately uneasy. As an atheist and a black person, two groups that have received its unfair share of negative attention from governments and social institutions, I am standing up for myself here too.

There is no virtue in pretending that Mr. King has a noble purpose in these witch hunts. It is not diplomatic to try and hear his side – his side is built on lies, hypocrisy and thinly-veiled racial animosity. The virtue here is in calling this exactly what it is, and refusing to stop naming it until Mr. King is shamed into obscurity.

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Can we get some of that here?

Romania has the right idea for all the wrong reasons:

Romanian witches and fortune tellers are cursing a new bill that threatens fines or even prison time if their predictions don’t come true. Superstition is a serious matter in the land of Dracula, and officials have turned to witches to help the recession-hit country collect more money and crack down on tax evasion.

I would love to see a law like this passed here, but applied equally to psychics, reflexologists, homeopaths, and any other profession that is in the business of making predictions based on tools that “can’t be measured by science”. Even if they can’t be measured, certainly we can test to see whether they work or not, right? Just like doctors have to keep scrupulous records of the prognosis and outcome of every patient they treat, and are subject to litigation if they make unreasonable predictions and promises, so too should be tarot card readers and other charlatans.

But of course Romania is doing this to separate the “real” witches from the “impostors”. Here’s a hint: they’re all impostors.

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Alternative therapies aren’t ALWAYS full of shit… but this one is

It seems that once again I am donning my ‘scientist’ cap and wading knee-deep into the shit…

Literally:

A hospital physician from a major B.C. facility says several patients died in the last year from C. difficile — unnecessarily — after the health authority stopped her and her colleagues from giving an experimental, simple and highly effective treatment… The treatment, called a fecal transplant, involves introducing stool from a healthy donor — usually a relative — into an infected patient’s bowel, usually through an enema.

Yes, you read that correctly. Dr. Jeanne Keegan-Henry is proposing transplanting somebody’s poo into the bowels of someone with a Clostridium difficile infection in order to cure them.

Poo.

Transplant.

Poo Transplant.

It sounds like the name of a doomed-to-obscurity high school punk rock band. And yet, Dr. Keegan-Henry, who is by all accounts an able and qualified physician, is recommending it. Skeptical smackdown time, right?

Here’s the crazy thing about skepticism. Detractors would characterize it as being resolutely opposed to anything that doesn’t sound like Big Pharma drugs, or is too experimental or outside the realm of conventional medicine. While it is often worthwhile to listen to the criticisms that come from one’s enemies, it is important to resist the temptation to allow them to define your position. More often than not, they are all too happy to succumb to the temptation of straw-manning you into oblivion rather than give a dispassionate description of what it is you actually think (cue the peanut gallery coming out of the woodwork to point out the many times I’ve done it to them).

Skepticism is about evaluating claims, all claims, according to their plausibility and the evidence supporting their truth. When I first caught wind of poo transplants (reader’s note: this article will be stuffed full of poop jokes – you have been warned) my skeptic hackles immediately went up. It’s really the prototypical case – we have a brave maverick doctor who is standing up to the medical establishment and recommending a completely natural remedy to a condition that is usually treated with drugs. For bonus points, it involves enemas. Seems like this ripe stinker was dumped right on our plate as another crazy whackaloon looking for attention (and possibly a book deal).

So, what does a skeptic do? She goes to the evidence! A quick search on PubMed (the U.S. National Library of Medicine National Institutes of Health centralized research database) for “fecal transplant clostridium difficile” reveals 30 hits – not exactly a stellar start; usually it’s in the neighbourhood of a few hundred to a few thousand results. The majority of these hits were commentaries and letters rather than full-blown research articles – also not a good start; what we’re looking for is systematic reviews of clinical trials, or at least trials themselves. We don’t have that – what we have is a handful of case series reports, each representing a tiny number of patients.

So I took a look at the largest case series, that of a 12-patient sample. And the results? Well… would you forgive me if I say “holy shit”?

Click to enlarge

Of 12 patients with infections ranging from 79 to 1532 days (mean length = 352 days), 100% of the patients in this sample experienced a clinical response, defined as “cessation of diarrhea, cramps, and fever within 3 to 5 days”. The authors describe their inclusion and exclusion criteria clearly, as well as the treatment protocol. Patient followup ranged from 3 weeks to many years after the intervention (which is a necessary evil of a case series – it’s not a prospective trial where follow-up can be standardized).

So, cut and dry answer right? Obviously it worked for these patients! No need for further study – let’s approve the shit!

Not so fast…

The reason for putting on the brakes (and possibly leaving skid marks) is that this is one sample of patients. These results are certainly dramatic, but there were no enterobacteriology cultures done – the gut was not examined to see if it was truly the poop that did the trick. The patients from whom the samples were taken had taken doses of antibiotics before donating their sample – was it the poo or the drugs that done it? Even the authors of the paper admit that they don’t have a certain mechanism by which fecal transplantation works. There are certainly some plausible attempts at explanation, but they still don’t know.There was also no control group for comparison (although in a time-series design it is permissible to use the patients as their own controls, comparing them to their pre-trial state – I am channeling that degree in epidemiology!), meaning that we cannot rule out the placebo effect or some other event as explanatory.

Is Dr. Keegan-Henry right? Should we be allowing fecal transplanation? Maybe – the preliminary results are certainly compelling (to go from years of suffering to resolved in 3-5 days is really remarkable). We should be enrolling people in small-scale clinical trials to test for efficacy. Given that there are no observed adverse effects of the transplantation, there’s certainly no reason to block the investigation:

Dr. George Sing, a gastroenterologist at Burnaby Hospital, also wants to provide the treatment to patients. “We did table [a proposal], but it fell into the cracks,” said Sing. “We have been through all the channels … but when it goes through committees it gets bogged down.”

Heh… he said “fell into the cracks”.

This is the hallmark of skepticism – even if something looks totally batshit insane, we test claims against evidence, not against what we think should work. I’ll be interested to see if this story develops.

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