Status of Women Committee on Nov. 28th, 2013

[The Vice-Chair (Mrs. Tilly O'Neill Gordon (Miramichi, CPC)), Conservative, Tilly O'Neill-Gordon]

Good afternoon, everyone. It's 3:30 so I will call the meeting to order.

First of all, I have a few housekeeping things I need to take care of.

As for the update on witnesses, Health Canada was asked and declined the invitation, but will be available at a later date. The topic for Health Canada will be healthy eating initiatives. The topic for Canadian Institutes of Health Research will be research funding. The Public Health Agency of Canada would be interested in talking about mental wellness promotion. Status of Women have declined. Other witnesses were also invited, but were unable to appear before Christmas because of time constraints.

We're happy to have Dr. Blake Woodside with us today. Welcome, Dr. Woodside. Thank you for taking the time to be with us. We will begin with your statement. You have 10 minutes.

[Dr. Blake Woodside, Medical Director, Program for Eating Disorders, Toronto General Hospital]

Thank you very much, Madam Chair, and members of the committee.

I'm most pleased that the committee has chosen this topic to investigate. It's very important, and I hope that your work goes well.

You may have my bio, but just to remind you, I'm Dr. Blake Woodside, and I'm medical director for the program for eating disorders at Toronto General Hospital. It's the largest program in the country. I'm a psychiatrist and a full professor in the department of psychiatry at Toronto General Hospital. I've been here 27 years. This is all I do, so without seeming to blow my horn, I would say I would be described as an expert in the treatment of eating disorders, especially the more severe forms of anorexia nervosa, which is all I've been doing for the last 20 years. I run the in-patient service here.

Let me talk to you a little bit about the overall situation first. I'm going to talk about two very serious eating disorders, anorexia nervosa and bulimia nervosa. Anorexia nervosa is a severe medical illness characterized by significant weight loss, denial of the severity of the condition, and serious medical complications that can lead to death. Bulimia nervosa is a syndrome of binge eating, usually associated with dietary restriction, and sometimes with behaviours to undo the episodes of the binge eating, like vomiting or taking laxatives or diuretics.

These are serious medical illnesses. Anorexia occurs in about 0.5% of the population, so there are about 150,000 people across the country who have or have had this condition. Bulimia nervosa is a bit more common. It affects nearly 1% of the population, so there are about 300,000 people with bulimia nervosa across the country. That's nearly half a million people. About 80% of the sufferers are women, and almost everybody in our treatment system is female.

These are lethal disorders. The mortality rate for anorexia nervosa is 10% to 15%. What that means is that of the 150,000 people who are currently affected, between 15,000 and 23,000 will die from their illness. The rates per year are difficult to determine, because very often mental health causes are not listed on death certificates for a variety of reasons. Probably between 500 and 1,000 people die from this condition every year in Canada.

Bulimia nervosa is a bit less lethal with a death rate of about 5%. That still amounts to about 15,000 deaths per year in Canada caused by bulimia nervosa. Again, probably 500 to 700 people a year die from bulimia.

The cumulative death rate from these two conditions would be on the order of 1,000 to 1,500 people per year. To put that into context, and I'm going to come back to this a bit later, prostate cancer in Canada kills between 3,500 and 4,000 people per year, so it's a bit less than that, but we're in the same ballpark, for sure.

In addition to the mortality rate, about 15% to 20% of people with anorexia nervosa will develop a chronic form of the illness. Of the current population of people affected, that's another 23,000 to 30,000 people. For these two illnesses, we have on the order of 50,000 to 60,000 people dead over the chronic form of the illness that is normally not responsive to treatment.

Anorexia is probably the most lethal psychiatric illness in terms of gross mortality rates. That's something people find difficult to believe when they're first told about it, but it is the case. The people who have this illness, while sometimes not aware of the severity of the condition, are extremely unhappy. These are not people who are pleased with their situation. When you assess people's happiness with their life with paper and pencil measures, women with anorexia and bulimia score worse than women who have chronic schizophrenia. Women with chronic schizophrenia are an unhappy lot, by and large, and people with anorexia and bulimia are even more unhappy than them.

These are complex illnesses and they're a complex mix of hereditable genetic factors, subtle abnormalities in brain circuitry responsible for regulation of emotions, and so on. The societal focus on objectification of women which leads to unrealistic goals for weight and shape results in a society focused on dieting and weight loss. While dieting does not cause a condition per se, it can unlock or activate the underlying vulnerability factors and cause the illness to occur. There are risk factors that exist in people which get activated in a variety of ways. One way to activate those risk factors is to become a chronic dieter.

This is why the illnesses are more prevalent at present, but they are ancient illnesses. The first English-language report of anorexia nervosa was in 1693. Bulimia nervosa is reported in the Jewish holy book, the Talmud, which takes it back 5,000 years.

I was meeting with a patient earlier this afternoon who is about 40, who mentioned on her way out the door that her grandmother, who died at 98, had bulimia her entire life.

Despite the severity of these conditions, especially anorexia nervosa, there is a pervasive discriminatory and stigmatizing attitude towards these illnesses. Nothing could be further from the truth than phrases like, “Why won't she just eat?”, “She's just looking for attention”, “It's all her mother's fault”, or “These are just spoiled rich girls”.

The best example of the egregious discrimination suffered by these individuals is access to treatment. For anorexia nervosa, one of the most lethal psychiatric conditions, wait times from referral to admission to a bed in an expert treatment setting run from four to six months. The average weight of my patients who wait this length of time is 80 pounds, with a body mass index of 14, for a woman who is five feet, four inches tall. That woman will wait four to six months from referral to admission to my program.

In my province, and I can speak a little bit to the rest of the country, there are only two other facilities with in-patient beds, each of which has a similar waiting list. It is much worse in other provinces, many of which have no intensive services available at all.

If there were waits like this of four to six months for prostate cancer treatment, there would be a national outcry. There would be marches in the streets. The marches would be attended by middle-age men like me, but of course prostate cancer is a disease of middle-age men just like me, and older, so there is a clinic for prostate cancer in every hospital in this country. Compare that with the situation for anorexia nervosa where, in the province of Ontario, one of the wealthiest provinces in the country, there are only three treatment centres that have in-patient beds for a population of 12 million. If this isn't discrimination, I don't know what is. There is just no other word for it.

On top of that, we spend millions and millions of dollars sending these patients to the United States when they have waited so long for treatment in Canada that they're going to die. It costs two to three times the daily rate to send them to the United States, and the treatment results are awful. We waste tens of millions of dollars when we could invest this money in Canada to provide treatment for people in their own country.

The good news is that treatment does help the majority of those suffering; 65% to 70% of those with anorexia nervosa will eventually recover, and 70% to 80% of those with bulimia nervosa will also eventually recover.

Early treatment is associated with better outcomes, so it's important to identify these patients in the early stage of their illness and get them to treatment right away. Prompt treatment is associated with better outcomes. Expert treatment is also associated with better outcomes.

To treat one of these people in my program, they'll be attached to us, living in the hospital or coming in during the day for six months. There are about 35 members of the multidisciplinary team who treat them. The interventions are complex, far more complex, for example, than a kidney transplant or even a heart transplant, which are very expensive procedures but relatively straightforward. Yet you hear all the time that these people with anorexia should be treated in general psychiatric units by people with no experience or expertise, and that is difficult.

The expert treatment isn't cheap, but the cost is trivial compared with the rest of the hospital system.

My own program, which is the largest in Canada, provides intensive treatment to about 200 patients per year at a cost of about $2.5 million. That's $10,000 per case. That's the cost of maybe 10 heart transplants, and my hospital does 75 of those a year.

We're further hampered in our ability to do adequate research into new treatments. I'm a career researcher with millions of dollars of research money in my research portfolio. We're engaged in cutting-edge research in neurostimulation on anorexia nervosa. We are the world's leading centre in novel treatments: deep brain stimulation and transcranial magnetic stimulation for eating disorders. Every last penny of my research money, aside from donations from generous individuals, comes from the United States, either from granting agencies or from private foundations.

The most recent large study I was involved in cost $8 million. The entire budget for the Institute of Neurosciences, Mental Health and Addiction, INMHA, is on the order of $13 million to $15 million per year. It is simply impossible in this country to do meaningful research on illnesses like anorexia or bulimia, given the amount of research money that's available. That $13 million to $15 million has to cover addictions and neuroscience as well as mental health.

There is no point in—

[The Vice-Chair (Mrs. Tilly O'Neill Gordon), Conservative, Tilly O'Neill-Gordon]

Excuse me, you are on your last minute.

[Dr. Blake Woodside]

Thank you, I'm almost done.

As I was saying, there is no point in even trying.

What do we need? First, we need more attention paid to this situation. The work of the committee will help with that.

We need to set some standards for appropriate clinical care for these patients, the type of treatment that works, appropriate wait times, and appropriate levels of access. We need national standards that can be applied across the country. Setting national standards is in the purview of the federal government and Health Canada. You can't force the provincial governments to do it because they control health care, but you can set the national standards.

We need examinations of the priorities and policies of CIHI and INMHA to allow us to develop a national plan for research into novel treatments for these deadly conditions.

Finally, you need to know that the work of the committee is very important in a whole other arena, in that it offers hope to both those who suffer and their families, hope that change can occur in our system of care, hope that the discrimination and stigmatizing attitudes can be reduced, and hope that the suffering associated with these conditions can be eliminated.

I thank you very much for your attention, and I am very happy to take questions.

[The Vice-Chair (Mrs. Tilly O'Neill Gordon), Conservative, Tilly O'Neill-Gordon]

Thank you very much for this very worthwhile and important information. We certainly appreciate your time.

We will now turn it over to Madam Susan Truppe to start the questioning.

[Susan Truppe, Conservative, London North Centre, ON]

Thank you, Madam Chair.

Thank you, Dr. Woodside, for being here today and sharing your expertise with us. You're our first witness. We're quite happy to listen to your findings.

Seeing that this is the status of women committee, we decided collectively that we would like to see how we might help women and girls with this very dangerous disease.

You mentioned a couple of things. You mentioned that the diseases remain hidden for some time when one isn't aware of the warning signs. You mentioned that early detection is important with eating disorders.

How can we work to reach out to people, to parents, teachers, coaches, other stakeholders, who are with these young girls, and educate them about what to look for or where to go for help if they suspect that someone important in their life is suffering from this?

[Dr. Blake Woodside]

Public awareness is very important.

First of all, these are serious medical conditions. They shouldn't be ignored. They don't generally go away on their own. They're not phases or bad behaviour.

I think you're going to have testimony later from Dr. Gail McVey, who is in charge of the Ontario Community Outreach Program for Eating Disorders. She's devoted her life to raising awareness in Ontario and can provide you with insight into how she does that and the extent to which it is effective.

I think it is a model for the rest of the country. It's primarily raising awareness, both among young people—children, adolescents, young adults—and their families, teachers, health care practitioners, and so on.

[Susan Truppe, Conservative, London North Centre, ON]

You also mentioned some of the comments that people make about spoiled rich girls. Do you think attitudes have changed over time?

I did volunteer work a long time ago in a psychiatric hospital, and I remember this one girl who had anorexia. Those were the comments back then, but I'm talking about 30 years ago.

Have the attitudes changed more now than way back then, and if so, how?

[Dr. Blake Woodside]

I don't think so.

These illnesses continue to be viewed as kind of pseudo-illnesses, that they're not real conditions, in spite of their enormous mortality rates and the rates of suffering that these people endure.

The illnesses occur right across the board. The patient we admitted yesterday is homeless and in a shelter. That's where she is, and she has wicked anorexia nervosa. The notion that these illnesses are confined to higher socio-economic groups is absolutely untrue. That's an outdated theory that goes back 50 years and has been disproved over and over again.

The notion that families or mothers cause this illness has been disproved endlessly. My master's degree research was in family functioning and eating disorders. The family functioning improves when you treat the eating disorder. The theory at the time was that it would get worse as you took away the eating symptoms and uncovered the family pathology. Families still get a bad rap for this, unfortunately. There's absolutely no evidence to support that's the case.

We keep working away at it. I will go to talk to anybody, at any time, about this, but I'm afraid that these discriminatory attitudes continue to persist.

[Susan Truppe, Conservative, London North Centre, ON]

Yes. Thank you.

Why do you think it affects more girls than boys?

[Dr. Blake Woodside]

That's an excellent question.

In community studies, it's about one in five, for men; in the clinic, it's about one in 30. The answer is that we don't really know. One of the theories is that its genetic, related to something on the X chromosome. Women have two; men have one. Other theories relate to patterns of brain development. There are clear abnormalities in neural circuit function in anorexia nervosa that probably pre-exists the illness. Some of those may be more common in women than in men.

It's really unknown at the present time. Certainly one of the important triggering factors, which is dieting, is much more prevalent in women than in men, although there is the computer geek thin for men as well, and many men who start weightlifting end up pursuing weight loss rather than getting bigger.

The actual answer is that we don't know.

[Susan Truppe, Conservative, London North Centre, ON]

Thank you.

For my own curiosity, what is the youngest girl you've seen with one of these diseases?

[Dr. Blake Woodside]

I'm an adult psychiatrist. I believe you'll also hear testimony from some of the child psychiatric experts in this area.

One who I believe is going to be invited is Dr. Leora Pinhas from Toronto, who sees patients as young as seven and eight, with what she is pretty convinced is full syndrome anorexia nervosa. She tells me that she thinks the age of onset is getting earlier and earlier. When she started in this 10 or 15 years ago, it would have been unusual for her to see a child before the age of puberty, and at this point, it's relatively common.

[Susan Truppe, Conservative, London North Centre, ON]

That's very young. That's very disturbing.

I'm assuming that treatment differs for women and girls with eating disorders depending on which disorder they have. How do they differ? We're brand new at this, so how do they differ?

[Dr. Blake Woodside]

The treatments actually are somewhat similar.

I'll start with bulimia nervosa, which is easier to treat than anorexia nervosa.

The binge eating of bulimia nervosa is not food addiction. It's actually a response to starvation in the same way that if you held your breath for a minute or two you would gasp for air because you were starved for oxygen. A certain percentage of the population, about 5%, will respond to hunger with these episodes of binge eating. That makes them different from everybody else.

To treat bulimia you have to feed people. In our day hospital we feed them lunch, afternoon snack, and dinner, and teach them strategies to resist urges to binge and to purge, because these things get tangled up into stressors and stuff like that. The fundamental treatment is to feed people. You eat your way out of bulimia, oddly enough. People in our day hospital service will stop bingeing in a week or two if they are able to do what we ask them to do.

The treatment for anorexia nervosa is similar in some ways. Although most people with bulimia don't like binge eating, and they'll do whatever they need to do to get rid of it, for anorexia nervosa, the decisional balance is often much more finely balanced, because the illness has advantages to the person as well as disadvantages. The fundamental thing you have to do is help people to eat and gain weight. That's the behavioural change that has to occur first.

Then people have to address the underlying cognitive set, the way people think about weight, shape, food, and eating, which has to happen with bulimia as well. Then people have to deal with their other psychological problems that underlie or are associated with the illness. Depending on what those are, that could be the work of many years.

About 60% of my patients have chronic complex post-traumatic stress disorder. They've been sexually or physically abused. They will work for eight or ten years to recover from that, although we have some novel treatments for PTSD that we're working on right now that are looking to be very promising.

[Susan Truppe, Conservative, London North Centre, ON]

Thank you. My time's up.

[The Vice-Chair (Mrs. Tilly O'Neill Gordon), Conservative, Tilly O'Neill-Gordon]

Thank you.

We'll move now to Niki Ashton.

[Niki Ashton, NDP, Churchill, MB]

Thank you very much, Dr. Woodside, for joining us today.

I wonder in your work if you've encountered any federally led programs or campaigns that you believe meet the needs of those suffering from eating disorders.

[Dr. Blake Woodside]

No.

[Niki Ashton, NDP, Churchill, MB]

That was a pretty quick answer.

[Dr. Blake Woodside]

It's the truth, unfortunately. There has been no federal attention to this ever in the last 27 years I've been involved in the field.

[Niki Ashton, NDP, Churchill, MB]

You did mention research. That is an area in which the federal government is directly involved, funding for research. In that area has there been some interest, or did you see perhaps a trend or interest before that doesn't exist any more?

[Dr. Blake Woodside]

Typically, I submit a grant application to CIHR. I've been involved in two or three grants recently. One was a grant looking at the health costs associated with eating disorders. It was a moderately complex study where data from a variety of sources was going to be obtained, and we were going to look at the lifetime health costs, or the 10-year health costs associated with these conditions, which is something that had never been done before. That grant application was sent to a committee of dieticians at CIHR, who said they could not review it because it was outside their area of expertise, so it was rejected. That's the type of thing that typically happens to grant applications that we write to go to CIHR.

We're very successful at NIMH, the National Institute of Mental Health, and in other countries' granting agencies. We're very successful with private foundations, but there seems to be a lack of interest at the INMHA level, the Institute of Neurosciences, Mental Health and Addiction. There seems to be a lack of interest and a lack of ability to appropriately review grant applications that go in.

Plus, frankly, the amount of money that they have to spend is trivial compared to what we need. We're submitting two grant proposals in February to a private foundation. We've been invited to resubmit because they currently fund our research. The total amount of those two grants would be $800,000 over two years. We could not hope to get that sort of money out of CIHR, regardless of our reputation or experience in the area of mental health. An amount of $800,000 would be most of their new grants for the whole year.

[Niki Ashton, NDP, Churchill, MB]

Dr. Woodside, you also mentioned societal factors at play. In particular, you pointed to the objectification of women, whether it's cyberbullying or the kind of messages we're seeing in all kinds of media, the pressures that young women are facing in different ways. I wonder if you are seeing a trend in that sense when we're talking about societal factors with the patients that you work with.

[Dr. Blake Woodside]

First of all, the way to think about the societal piece, especially when you think about the genetics of these illnesses, is that anorexia nervosa is one of the most heritable psychiatric conditions. The heritability is about is about 75%. The heritability of schizophrenia, for example, is about 50%. The heritability of sugar diabetes is about 70%. It's a highly genetically determined disease. Genetics loads the gun, and environment pulls the trigger.

Since the early 1960s the ideal for female beauty has been an unrealistically thin ideal. There's a bellwether; that's a sociological term for a single person who resets a societal trend. This person was Twiggy in the early 1960s, who literally overnight reset the expectation for what a woman should look like, as compared to someone like Marilyn Monroe, five or six years previously, who at five feet six inches weighed 135 pounds and everyone thought that was fine, thank you very much.

By the time you get to the early 1980s, if you can think of that Jane Fonda 20-minute workout image—everybody knows that image—she's five feet seven inches and weighs 115 pounds, which meets a diagnostic criteria for anorexia nervosa, by the way, and she did have anorexia for many years. She's fessed up about that.

There was this massive sudden change. I've been watching this, obviously because of what I do for a living, for 25 or 30 years.

In the 1990s we thought we were getting out of it because there was a brief interest in muscularity and strength for women. That went on for about five years, from 1990 to 1995. The AIDS epidemic starting in the late 1980s certainly made it not particularly attractive for men to diet and lose weight, because if you lost weight everyone thought you had AIDS. That resolved itself after about 10 years. The female muscularity thing very rapidly turned into leanness and muscle definition and went straight back to calorie-reduced dieting.

I wish I could say that this is changing, and sooner or later it will change, because a preference for body weight and shape is like hemlines or hair length: it is a fashion statement. It keeps getting gussied up as a health issue, but it's not. It will eventually change. It's relatively recent in our history, only about 50 years, but there's very little evidence that it's changing right now.

Education about attitudes to weight acceptance and so on is very important, but they are being plowed under right now by a belief that we have an epidemic of obesity, especially in children, which frankly isn't true. It's very complex.