We need a national framework to better support Canadians with fetal alcohol spectrum disorder: Senator Ravalia
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Fetal alcohol spectrum disorder (FASD) is one of the leading neurodevelopmental disabilities in Canada, affecting 1.5 million Canadians, or 4% of the population. For context, that’s more than the number of people with autism, cerebral palsy and Down syndrome combined.
FASD is a complex, lifelong condition that presents in a wide range of disabilities resulting from exposure to alcohol in utero. Every individual with FASD possesses different strengths and abilities and requires varying degrees of support. Currently, they are not receiving that support adequately or consistently.
Access to FASD prevention, diagnosis, interventions and supports across our provinces and territories is patchy at best. Diagnosing FASD is complicated and resource-intensive and requires a team of multiple specialists with varying areas of expertise. There are 73 diagnostic clinics across Canada and they are not evenly distributed. While some provinces have a handful of clinics, others may have none.
Where there are clinics, most have lengthy waiting lists or very limited capacity, and they are almost never located in rural or remote areas. As a rural family physician in Newfoundland and Labrador for more than 35 years, I’m all too familiar with these challenges.
There is no FASD surveillance system in place. The CanFASD Research Network relies on smaller provincial studies and extrapolates its data to determine prevalence. Less than half of Canadian diagnostic clinics contribute to the national database, suggesting the numbers do not accurately reflect the prevalence or distribution of this disorder across our country. There is a significant — but ultimately unknown — number of Canadians with FASD who are unidentified, and therefore undiagnosed and unsupported.
The problem is particularly acute in populations that have compromised social determinants of health, including in the child welfare system, justice and corrections and our Indigenous communities. Addressing FASD is outlined in Actions 33 and 34 of the Truth and Reconciliation Commission’s Calls to Action.
The lack of co-ordination is costing us. Recent research has shown that the societal cost of FASD in Canada is significant, topping $10.5 billion annually. These costs are incurred through criminal justice, health care, educational services, social services and other indirect financial losses, including lost productivity.
The consequences of prenatal alcohol exposure were first described more than 50 years ago. Since then, we have made some progress. Research and expertise have continued to develop and prevention continues to be a focus, with a shift toward destigmatizing mothers who have used alcohol during pregnancy and providing early interventions.
More than 20 years ago, the federal government released its Framework for Action for FASD. It was designed as a tool to guide future action on FASD in Canada. It stands as a vision for how jurisdictions can work together to improve the lives of those impacted by the disorder and, critically, to prevent alcohol-affected births.
Indeed, some provinces and territories have introduced strategies or initiatives to help address FASD. However, 20 years later, advocates, experts and those with lived experience are still calling on the federal government to take a leadership role in these areas.
In October 2022, I introduced Bill S-253, the National Framework for Fetal Alcohol Spectrum Disorder Act, in the Senate. The bill would require the minister of health, in consultation with other ministers and stakeholders, to develop a national framework designed to support Canadians with FASD, their families and their caregivers.
The framework would include measures to standardize guidelines, improve diagnostic and data reporting tools, facilitate information exchanges, and increase public and professional awareness, among other things. It would be developed within a specified time frame with the express intention of working with the provinces, territories, stakeholders — including self-advocates — and Indigenous communities. The framework would also be subject to parliamentary oversight.
Bill S-253 is currently making its way through the legislative process and has been referred to committee for further study.
September 9 marked International FASD Day. Since 2020, the Government of Canada has recognized September as Fetal Alcohol Awareness Month. I’m proud to say that my home province of Newfoundland and Labrador has also made this declaration.
A national framework for FASD is long overdue. Bill S-253 is one step in the right direction to help fill the gaps and improve the lives of at least 1.5 million Canadians, their families and their caregivers.
Senator Mohamed Iqbal-Ravalia is a former family physician. He represents Newfoundland and Labrador in the Senate and introduced Bill S-253.
A version of this article was published in The Hill Times on September 7, 2023.
Fetal alcohol spectrum disorder (FASD) is one of the leading neurodevelopmental disabilities in Canada, affecting 1.5 million Canadians, or 4% of the population. For context, that’s more than the number of people with autism, cerebral palsy and Down syndrome combined.
FASD is a complex, lifelong condition that presents in a wide range of disabilities resulting from exposure to alcohol in utero. Every individual with FASD possesses different strengths and abilities and requires varying degrees of support. Currently, they are not receiving that support adequately or consistently.
Access to FASD prevention, diagnosis, interventions and supports across our provinces and territories is patchy at best. Diagnosing FASD is complicated and resource-intensive and requires a team of multiple specialists with varying areas of expertise. There are 73 diagnostic clinics across Canada and they are not evenly distributed. While some provinces have a handful of clinics, others may have none.
Where there are clinics, most have lengthy waiting lists or very limited capacity, and they are almost never located in rural or remote areas. As a rural family physician in Newfoundland and Labrador for more than 35 years, I’m all too familiar with these challenges.
There is no FASD surveillance system in place. The CanFASD Research Network relies on smaller provincial studies and extrapolates its data to determine prevalence. Less than half of Canadian diagnostic clinics contribute to the national database, suggesting the numbers do not accurately reflect the prevalence or distribution of this disorder across our country. There is a significant — but ultimately unknown — number of Canadians with FASD who are unidentified, and therefore undiagnosed and unsupported.
The problem is particularly acute in populations that have compromised social determinants of health, including in the child welfare system, justice and corrections and our Indigenous communities. Addressing FASD is outlined in Actions 33 and 34 of the Truth and Reconciliation Commission’s Calls to Action.
The lack of co-ordination is costing us. Recent research has shown that the societal cost of FASD in Canada is significant, topping $10.5 billion annually. These costs are incurred through criminal justice, health care, educational services, social services and other indirect financial losses, including lost productivity.
The consequences of prenatal alcohol exposure were first described more than 50 years ago. Since then, we have made some progress. Research and expertise have continued to develop and prevention continues to be a focus, with a shift toward destigmatizing mothers who have used alcohol during pregnancy and providing early interventions.
More than 20 years ago, the federal government released its Framework for Action for FASD. It was designed as a tool to guide future action on FASD in Canada. It stands as a vision for how jurisdictions can work together to improve the lives of those impacted by the disorder and, critically, to prevent alcohol-affected births.
Indeed, some provinces and territories have introduced strategies or initiatives to help address FASD. However, 20 years later, advocates, experts and those with lived experience are still calling on the federal government to take a leadership role in these areas.
In October 2022, I introduced Bill S-253, the National Framework for Fetal Alcohol Spectrum Disorder Act, in the Senate. The bill would require the minister of health, in consultation with other ministers and stakeholders, to develop a national framework designed to support Canadians with FASD, their families and their caregivers.
The framework would include measures to standardize guidelines, improve diagnostic and data reporting tools, facilitate information exchanges, and increase public and professional awareness, among other things. It would be developed within a specified time frame with the express intention of working with the provinces, territories, stakeholders — including self-advocates — and Indigenous communities. The framework would also be subject to parliamentary oversight.
Bill S-253 is currently making its way through the legislative process and has been referred to committee for further study.
September 9 marked International FASD Day. Since 2020, the Government of Canada has recognized September as Fetal Alcohol Awareness Month. I’m proud to say that my home province of Newfoundland and Labrador has also made this declaration.
A national framework for FASD is long overdue. Bill S-253 is one step in the right direction to help fill the gaps and improve the lives of at least 1.5 million Canadians, their families and their caregivers.
Senator Mohamed Iqbal-Ravalia is a former family physician. He represents Newfoundland and Labrador in the Senate and introduced Bill S-253.
A version of this article was published in The Hill Times on September 7, 2023.