:
Thank you, Mr. Chairman.
[English]
It is a pleasure encore to be with the committee again, this time on a topic that's very important, and not about pandemics. In the context of many people's experience, this is an increasing challenge in Canada, and it has a potential impact on individuals, families, and communities that we think of in other realms as well.
The former standing committee had requested that we return with a vision document to give the committee an opportunity to discuss further the prevention of FASD. I guess it depends on the perspective, but unfortunately, Parliament dissolved, and we're now back with a new committee.
I really am pleased to discuss a vision with you today.
[Translation]
Addressing FASD has been a commitment of the Government of Canada since the mid-nineties. As you know, the term FASD describes a range of lifelong disabilities caused by prenatal exposure to alcohol. It is a leading form of developmental delays in North America and a major cause of preventable birth defects.
[English]
The primary disabilities from fetal alcohol create, by the best estimates, somewhere in the neighbourhood of $1.5 million in additional direct costs over the course of an affected individual's lifetime. These costs, we recognize, do not include either the loss of potential of that individual or that of their family or caregivers.
It is in fact a risk for all women of child-bearing age who drink alcohol. Recent studies have shown that drinking even small amounts of alcohol may have a negative impact on the developing fetal brain.
[Translation]
Alcohol-related congenital defects have an impact upon public health, health care, education, ability to work, justice, policing, corrections and child and family welfare systems. Therefore, multiple layers of government must be involved as partners.
[English]
While many departments across government have programs and projects to address fetal alcohol issues, the health portfolio is currently the only federal department or portfolio with dedicated resources for fetal alcohol syndrome disorder.
[Translation]
The Public Health Agency of Canada manages the pan-Canadian FASD Initiative with an emphasis on the federal public health role. The Government of Canada is also responsible for providing community-based health programming in First Nations and Inuit communities.
[English]
Many provinces and territories have also identified fetal alcohol syndrome as a serious issue for their governments and have developed strategies along this line. They have called upon the Government of Canada to demonstrate leadership and to develop a federal strategy.
In 2003, following consultations with the provinces and territories, as well as with stakeholders across the country, Health Canada released the framework for action to guide the development and implementation of collaborative efforts.
[Translation]
The Framework for Action has become a blueprint for action, and has served as a benchmark for the creation of the Vision. I understand that Committee members have received copies of the Framework document.
[English]
The vision is actually based on a three-pronged approach: the promotion of health generally; the prevention of FASD and the reduction of harm by minimizing risk; and thirdly, the early detection and management of FASD and related chronic health and social problems.
Within this approach there are five themes that guide the development of the vision. Under the first theme, the emphasis is on strengthening leadership and coordination to ensure access to tools and knowledge across the country. Stakeholders at all levels are being pressed to work on fetal alcohol problems and related issues as a direct result of growing client needs. Collaboration has let us work more effectively and efficiently and has facilitated joint projects and activities.
The next two themes involve increasing the awareness of the general public and professionals. In 2002 women told us that they felt their health care providers were the most reliable source of information.
[Translation]
They also told us that there is inconsistent messaging about the consumption of alcohol during pregnancy. Other research has told us that many health care providers do not feel comfortable dealing with women who drink alcohol during pregnancy.
[English]
In recent years, therefore, the Government of Canada has focused much of its efforts on enhancing health care provider awareness, knowledge, and skills, and the provision of tools and resources for use with their clients.
[Translation]
Large public awareness campaigns are very expensive and require a great deal of research to segment audiences into various population sub-groups within women of childbearing age so that messages are accurately designed according to, for instance, age, socio-economic status, and risk factors.
[English]
The health portfolio has collaborated with provinces and territories in establishing the common messaging that no alcohol could be considered safe during pregnancy. Many of the provinces and territories, in collaboration with their liquor control boards, have conducted effective general public awareness campaigns. Part of the challenge, though, is that with limited funds available, the health portfolio has focused on providing the knowledge base for assessing the learning from effective campaigns, helping to make tools and resources available to communities and groups in order to build their capacity to plan, to manage, and to evaluate effective awareness campaigns, which can then be used as part of general health promotion and prevention work.
This continues to be an important element in addressing fetal alcohol syndrome disorder and is bearing some fruit in the improved general awareness of the harm caused by alcohol used during pregnancy, as can be seen from our most recent public opinion tracking. Environics, during March and April of this year, found that there'd been an improvement, in some 11% of the women surveyed, in knowing that any alcohol consumption during pregnancy can harm the baby.
In addition, diagnosis has been an area of focus in recent years and does represent the fourth theme of the vision. Research has shown us that early identification and diagnosis and effective intervention can in fact improve outcomes for those affected as well as their families and caregivers. Many of the costly secondary effects can be prevented through early and effective management of this lifelong disability.
As a result of this research, the Government of Canada facilitated the work of a national expert advisory committee and a wide range of experts and stakeholders to develop and implement the FASD Canadian guidelines for diagnosis.
[Translation]
A common diagnostic approach is critical to being able to move towards national incidence and prevalence data. In the future, an ability to track national incidence and prevalence data will allow us to determine whether FASD awareness and prevention activities are having an impact on reducing alcohol affected births and, consequently, alleviating the individual and societal costs associated with FASD.
[English]
This work also appears to be bearing fruit in that the majority of clinics diagnosing in Canada are adopting the new guidelines. This means that we have in fact taken a first step in a common minimum data set on referrals, diagnosis, and common reporting. Central to the vision is the concept that knowledge must be developed and then exchanged to inform and create evidence-based multi-sectoral initiatives.
[Translation]
Knowledge development work includes partnership with the Canadian Institutes for Health Research and other such organizations to develop a common research agenda. The long term goal is to build Canadian knowledge and researcher capacity on FASD.
[English]
Finally, it's important to help communities to help themselves. And communities, including communities of practice and front-line workers, do need the capacity to deal effectively with these issues.
Local development and exchange of knowledge and evidence will help communities define effective policies, programs, and practices, and this would include sector-specific as well as intersectoral collaborations.
[Translation]
Local development and exchange of knowledge and evidence will help communities define effective policies, programs and practices. This would include sector-specific and inter-sectoral collaboration.
[English]
It should include social work, child welfare, child care, homeless shelters, and education workers, police, lawyers, judges, parole and corrections officers, employers and employment counsellors, and the community really, at the community and regional level.
I am confident, Mr. Chair, that the vision presented to address FASD provides a cohesive way forward and engages, and continues to engage, multiple partners across various sectors as we move forward. Again, as I've often said, on the issues of pandemic, we're not there yet, but we are making progress. Clearly, the Government of Canada has an important leadership role and must work with key partners and stakeholders to promote the health of Canadians and address this issue. Collectively, I think we're on the right road, but there is still much to be done.
Merci.
:
Thank you. I may be splitting part of that time. It depends if we can get some answers.
Some time ago, Health Canada collaborated with about 18 other organizations, including the CMA, etc., and one of the things it said in its first principle was that fetal alcohol syndrome was the leading known cause of mental retardation in Canada. That's a very ominous statement, and it's absolutely wrong. Fetal alcohol syndrome is not the cause of anything; it is the result. And way back then, and now, it appears that Health Canada still is not prepared to say the maternal consumption of alcohol during pregnancy is the leading known cause of mental retardation in Canada.
I wanted to make that point because it leads to the same point: I've seen this all before. I think I saw this speech 10 years ago. I'm sorry. I'm disappointed. I haven't seen anything new here. I haven't seen any progress. But it says on page 6 of my report--I don't know where it is in the French--that the health portfolio has collaborated with provinces and territories in establishing the common message: no alcohol is safe during pregnancy.
Dr. Butler-Jones, there is enough medical evidence that the risk to the fetus from maternal alcohol consumption occurs from days 15 to 22, when human facial features are established. And in this statement it says no alcohol is safe during pregnancy. It begs the woman to determine, first of all, am I pregnant? If I'm pregnant, then I'm going to make a decision.
This attitude is fatally flawed, and I don't know why the heck Health Canada still cannot bring itself to understand that the message should be--and I want your comments on this--changed immediately to, "If pregnancy is possible, i.e. you are sexually active, not using protection, and are in your birthing years...." That's what the message should be: "You should not use alcohol if pregnancy is possible." Eliminate the risk.
Can Health Canada adopt that as a new saying and get the provinces and territories to adopt it? And can we take one step forward on this file that has taken no steps in the last decade?
:
Thank you for being here today. I believe that the issue being raised is one we are aware of.
Bill C-5 respecting the establishment of the Public Health Agency of Canada concerns health in general and your collaboration in establishing initiatives. When we ask questions on an issue under Health Canada's responsibility, the new administrator, Mr. Butler-Jones, says he doesn't have any answers because Health Canada handles it. We don't get the impression these two entities communicate very well, which won't facilitate matters when future initiatives are introduced. Who do we talk to? The new agency or its director, or Health Canada?
Health protection and promotion appear in the preamble of the bill establishing the new agency. If I ask questions on Aboriginal health, for example, I can speak to you and you can give me answers.
Let's take the money that has been invested to fight and prevent fetal alcoholism. In 2001, you invested approximately $25 million, and we don't know what impact that investment has had. Now you want to develop a national plan because, you say, the provinces and territories have asked you to do so.
So it's hard to monitor this new agency and the role it plays in connection with Health Canada and the entire health system in Canada. I don't think Quebec called you in on this issue. For the moment, I won't list all the measures taken by the Government of Quebec to fight fetal alcoholism.
The federal government is responsible for the entire issue of Aboriginal health. And yet, we don't get the impression that a portion of the money invested for Aboriginal health — $17 million at most — was used to fight fetal alcoholism. How much money has been paid to fight this phenomenon? It's quite difficult to see how you will be able to harmonize the strategies put in place by the new agency and by Health Canada management. Who will we talk to? Who will give us the real figures and an accurate picture on changes in alcohol consumption during pregnancy?
I don't need you to answer my first question verbally. If we could receive your answer at some other time in writing, I'd be happier. These activities were all identified as short-, medium-, and long-term, and I'm not sure what that means. It probably means something different for each area, but I don't know whether short-term means next week, next month, or next year. Many of the issues that I'm concerned about are identified as medium-term issues. I'd appreciate it if at some stage we could have in writing what the timelines for those initiatives are, rather than taking up my question time to have somebody respond to that.
My second point is that this is really--and I agree with the first speaker--a women's health issue. The infant is the victim of it, but it's a women's health issue. We have groups of special needs adoptive parents who are very active in this area around the country. The May 5 Canadian Medical Association Journal, which included the uniform diagnosis standards, was to look next at the screening tool--at least I think the committee was.
As for those women at risk, I would want to add--because I haven't heard them mentioned--the people who have any responsibility, and that's often not a lot, for urban aboriginal health, not aboriginal health on reserve.
In my province, British Columbia, one of the largest groups of FASD babies are those from the U.K. That's why under theme one you're talking about international partnerships. In the U.K. they still tell moms it's okay to drink; you can drink only a certain amount, which is actually quite outrageous. You can't smoke, but you can drink a certain amount. So I'm very interested in getting into international partnerships, because we're seeing a larger number of U.K. babies in the province of British Columbia who are FASD or along that line.
My second point--if you have time to respond to it--is that we focus a lot on children, infants, toddlers, etc., but when those people are teens and young adults, we're seeing them in conflict with the law, we're seeing them in the prison system. I have an interest in what work is going on to work with those people so that they don't end up in the prison system or in conflict with the law because they didn't have the attention they needed when they were younger.
:
Thank you very much. I don't want to repeat what Paul Szabo said, but I do reflect a lot of what he says. I really agree with him.
Now everyone talks about it being 10 years. Let me tell you something. Before I became a politician in 1989, I was on a national task force to deal with what was then commonly known as FAS/FAE. I was the Canadian Medical Association representative.
On that we had representatives from the alcohol industry, distillers. We also had parents of children who had FAS/FAE. We set out a beautiful plan to have short-, medium-, and long-term goals. It was all nicely done, and one of the goals had to do with labelling. We looked at some of the things that went on in California that were being shown to be very successful in terms of posters in restaurants, posters in liquor outlets, and of course the labelling of alcohol. I know everyone was shocked--and that was about 17 years ago--to find the alcohol industry in Canada labels its bottles to send to the United States but doesn't label its bottles here; that tells you the bottles can be labelled. It's because we lack the will to do this in this country, and given that this is a very preventable cause of what I consider to be human wastage in terms of generations of people who are born with a syndrome that is fully preventable, it really distresses me that 17 years later we are still hearing things like, “It's going to cost too much. Public awareness campaigns are very expensive.”
The cost of the human wastage is very expensive. Nobody has even calculated the lack of productivity of young people with FAS and FAE. Nobody has calculated the cost of people who go to jail who are not really criminals at all, but are actually put into our prisons because of this particular issue. No one has done some of the things we mentioned a long time ago, such as to train corrections officers and police officers to identify the difference between someone who is in fact criminal and someone who has a fetal alcohol spectrum disorder. None of that has been done. We have done absolutely no prevention.
Now, I could talk about the fact that $900,000 to CIHR for this issue is a joke. I can talk about the fact that when the committee on the non-medical use of drugs came up with some recommendations, everyone gave a million dollars over two years, which was a joke.
So we have to ask ourselves--and I know it's a provincial issue--two things. Is the federal government under the new national Public Health Agency going to do certain things that the federal government can do within its jurisdiction? Get a database going. Become a clearinghouse for information. And, thirdly, is the federal government going to be able to pull together the best practices of certain provinces and move on it? This is the role of the federal government, a coordinating role and a leadership role in facilitating certain things. That was identified and it has not been done. I want to know if it's going to be done.
I want to know if training of corrections officers and police is going to be done. I want to know if we're going to talk about putting the appropriate amount of money into research. I want to know if we're going to deal with labelling and prevention. This is preventable. We have to prevent it. I want to know if that's going to happen.
Seventeen years later, I am sitting here as a physician. There were brochures in every physician's office. You should know that. In 1988 the British Columbia Medical Association produced brochures with its own dollars, and it was taken up by the local medical associations in every province. The medical associations came and said they were doing it and would Health Canada assist them with the costs of doing this for a longer period of time. Every patient who came into the office picked it up, read about it, talked to the doctor about it.
That was never done. Why not? Now let me have the answers. I'm just fed up.
:
Thank you, Mr. Chairman.
Dr. Butler-Jones, you usually have answers to all questions, but you're surprising me today. You're confirming the apprehensions we had about a separate public health agency. As a result of the overlap, no one knows anything anymore. I've been watching for a while: a few words here, a few words there. No one is aware of anything whatever. That disappoints me enormously.
Last year, when you came to talk to us about fetal alcohol syndrome, we said that Aboriginals on reserves had major problems. Those problems haven't been solved. I believe the initial problem is poverty. Until that's been solved, we won't solve any other problems. That's not being discussed. In Quebec, for some 10 years now, pamphlets have been issued to all women who go to their doctors, to their obstetricians. Why is it so hard for Health Canada to inquire with Quebec and to ask for a brochure if it doesn't have the necessary money to do research? I don't understand, and I don't see how you can help people by publishing articles in a journal that's only read by doctors instead of doing something that would be read by the people concerned. I don't understand your actions, particularly since this little booklet is so beautiful, so poetic: vision for the future, imagine a world where all Canadians show compassion toward women. But before showing compassion toward women, you have to start by believing at the top, in the department, in the decision-making bodies. It seems to me that all this money has been spent pointlessly and that nothing has been done.
We don't have any actual statistics on the prevalence of fetal alcoholism. We don't know how many children really suffer from it. I don't understand that. How can it be that we don't have any actual data? I don't understand why, after investing so much money in this field, we are still at the dreaming and imagining stage, that we're not yet at the action stage. That really distresses me. As a woman, as a mother, as a grandmother, it distresses me to know that there are pregnant women today who will drink alcohol because they haven't had access to a pamphlet. It greatly saddens me.
I have four points I'd like to make. One of them is, if I were pulling together stakeholders to ask about this, there are moms who will talk about the fact that they binge-drank when they were pregnant and as a result had a baby with FASD. So other than the higher-level people, I would actually ask the people who had engaged in the activity about what kind of information or what kind of mentoring might have prevented that activity.
My second point is, these are lovely. The brochures in the doctor's office are lovely, and often they are, and sometimes people read them, but let's remember a large part of this country is not literate, although you did make the point. We have to get information out in other ways, assuming that not everybody is able to pick up the fancy brochure and read it. By the way, in languages, there is no point in my picking up the English brochure if all I speak is Punjabi. So that's one of the points I'd make.
Let me put my previous minister of health, or minister of education, or minister of labour hat on, or whatever they give you when they can't find the job that would fit for you, and say that without empirical evidence, I have no way, as a minister in a province, of budgeting for what kinds of resources I'm going to need, either in the education system, in the post-secondary system, or in--I hope not--the prison system, but at least in the rehabilitation part of the corrections system. So without any kind of empirical evidence, I can't budget. This becomes one more very large piece when you talk about $1.5 million--although I don't think most people with FASD live to be 65. This is not my understanding, so I think that is an age that probably is further.... Without that information, I can't budget and I'm not going to have enough money to be able to provide the services people need, because it is a reasonably new item, although 20 years old, but reasonably new in budgets.
So those are the things that concern me. If you could comment on those, I'd appreciate it. Thank you.
I know you don't want to be a kingmaker, Dr. Butler-Jones, or queenmaker for that matter, but I do think there should be...and I have always felt this, so the fact that I differ on what this Public Health Agency is going to look like is not for lack of trying. I believe the Chief Public Health Officer of Canada should not be restricted by being a bureaucrat. I think he or she should be someone who becomes an advocate for the health status of Canadians, in every single way.
I understood you were going to take over, or this agency would take over, much of the work of the population health agency, or the population health strategies that went on in the Department of Health. I think that while I agree with you that coordination is absolutely important—and obviously provincial jurisdictions and all of that must be taken into consideration—I think you can duplicate a lot at the federal level if you have too many people doing the same things within the same department. I think there has to be one person who has to set the strategy and has to be responsible for it at the end of the day, or if it doesn't happen, unlike a bureaucrat, they must be able to say: this isn't working, I don't think this is appropriate, we should set these kinds of goals, and this is not right. One can't do that if one is trying to wear two hats. So that concerns me.
I would like to see, for instance, the Public Health Agency set measurable goals—10-year goals for achieving health status, for achieving population health, for bringing down FASD. However, how can you do that if you don't even have incidence currently?
I go back to my question: is there a role that the federal government sees itself playing as being the clearinghouse for bringing together evidence from the provinces and putting it in one place, for setting up a national incidence levels...and then using that to set measurable goals for 10 years for bringing down the incidence of FASD in Canada?
The second question I want to ask is to the Department of Health. That is, are you working horizontally with Correctional Service Canada, with the RCMP, and with other agencies that look after criminality, etc., again to train them to understand the different behaviour patterns of people with FASD, as opposed to a criminal?
There is a real difference between the two. A lot of these young people go to jail because they are thought to be criminals when really they are not. There is a certain level of mental competence that they don't possess and a certain level of behavioural problems they have that need to be identified. So you don't criminalize what in effect is a health syndrome. This is a question I want Health Canada to answer: are you working across...?
I'd like Dr. Butler-Jones to answer about whether he sees the federal government having a role and whether he's going to take that role on.