Thank you.
I think you all should have a PowerPoint deck. I'm a scientist, so you're going to be stuck with doing things the scientist's way. I also submitted a brief.
I am the scientific director of the Society of Obstetricians and Gynaecologists of Canada. I was formerly the executive director of the Canada FASD Research Network, which is a national research network that facilitates policy-relevant research in Canada. I also worked for the public service for about nine and a half years—all within FASD. I also have had a scientific research career in the field that I've been in for—I counted this morning—23 years. I'm starting to feel a bit old.
Thanks for having me here.
Dr. Popova and Dr. Andrew and I exchanged slides so we shouldn't have any duplication, so that's good. We know that your time is valuable.
Today I'm going to take a bit of a different approach and talk a little about the context around women and alcohol. We know that women do drink during pregnancy and we know that no woman actually wants to harm her child.
There are a lot of different reasons why women do drink during pregnancy. The first slide shows some of those reasons: prior history of alcohol consumption; family background of alcohol use; history of in-patient treatment for problematic alcohol substance use or mental health problems; previous birth of a child with FASD; unplanned pregnancy; emotional, physical, or sexual abuse; low income; limited access to health care.
The burning question in the field since I've been in it for a really long time is: how much alcohol is too much? How much can a woman drink that's going to be absolutely guaranteed to keep her fetus safe? The answer is that we don't know. We can't scientifically figure out an absolute safe amount or an absolute risky amount. The amount of alcohol required to cause damage differs, based on the individual, on the fetus, and their interactions in the womb together.
We know that the dose of alcohol is important. Research does show that binge drinking is more harmful. When your blood alcohol level goes up and stays up high for a while, like frat party drinking, and then goes down, that's more harmful than sipping on a beer all day long.
We know that pattern and timing of exposure during pregnancy is important. As the baby develops, when alcohol is a factor, what's developing at that time can be specifically influenced. The important thing to know is that the brain is developing throughout gestation and is always susceptible to alcohol. We used to be able to give alcohol to mice on a certain day of gestation—just one day—and they'd be born with limb and kidney defects. You can give it on a different day and they'll have facial features. But the problem, as I said, is that the brain is always susceptible.
We know that genetics play a factor. We know that smoking and other drug use comes into play. General health, nutrition, stress, trauma, and age of the mom are all factors on how susceptible that fetus is to prenatal alcohol exposure and the damage. There's recent data now that I think is very exciting, probably more than others, that shows that stress and nutrition factors in mom, even before she's pregnant, can have a susceptibility factor on her developing fetus. That's called epigenetics, and it's very fascinating. There can be brain changes in moms that can be passed on to babies and affect their susceptibility as they're developing.
We always say that no alcohol is safe because that's the truth; we don't know any different.
The next slide talks about some of the data from the Canadian community health survey about alcohol use among women. It is a problem in women of child-bearing age. You can see that moderate alcohol use is very high in the 19-to-34 age group, and this age group accounts for about 80% of the pregnancies in Canada. We know that about 50% of pregnancies are unplanned, so alcohol use among women in Canada of child-bearing age who are at risk for being pregnant is significant.
The Canada FASD Research Network has a first-ever database of individuals with FASD. We have 289 individuals in that database, and we're collecting information around their brain function and what kinds of interventions have been suggested, so we can try to figure out what the best match is. The gentleman earlier talked about the importance of mental health and brain function and how we can match that to programs or treatments that improve and maximize outcomes.
This data hasn't been published yet. It's new. It's hot. It's exciting. But the characteristics of adults with FASD in our database—alcohol problems, marijuana use, drug problems, past or current trouble getting and keeping a job—are for greater than 50% of the adults. Eighty-five per cent have trouble living on their own. There are some who could be homeless. Eighty-five per cent had no high school diploma, 63% were a legal offender, and half were a legal victim. Many of the patients were institutionalized at the time of assessment or in the past. Fifty-seven per cent had been in the hospital, and 40% in jail. These are the adults in our Canadian database. There are lots of challenges with daily living, social-skill deficits, and the majority had family abuse problems as a victim, aggressor, or both.
These individuals are very affected. Their brains are much more affected than we initially thought they would be, but diagnosis really does matter. Many of you may have heard of the diagnostic guidelines that the Canadian Medical Association published in 2005. We've revised those guidelines, thanks to funding from the Public Health Agency of Canada, and they're being published, hopefully in June. We just resubmitted them to the Canadian Medical Association Journal. The guidelines talk a little bit more about screening and how to recognize when alcohol use during pregnancy may be a problem.
We know that diagnosis improves outcomes, the earlier the better. Part of that is because people understand the implications of FASD, what it means, and we can try to develop integrated care teams to get families the supports and services that they need. Diagnosis is important. It identifies neurodevelopmental strengths and weaknesses so that we can better match, as I said, treatments and interventions. It's complex, and I will mention that we do have an initial diagnostic database that could be very powerful.
So why doesn't any of this matter? We know that women drinking alcohol during pregnancy is still a significant issue in Canada. Prevention in the current social context is key. Drinking alcohol is sexy in a lot of ads. It's very socially acceptable. Helping women to understand not just the harmful effects of alcohol on fetal growth and development but also the harmful effects of alcohol on health in general....
Individuals with FASD have neurodevelopmental impairments, which you heard about this morning—and Dr. Andrew will talk more about those—that put them at risk for adverse secondary outcomes, such as trouble with the law and mental health issues. A study by Jacqueline Pei, who I think is going to talk to you next week, showed that 95% of individuals with FASD had diagnosed mental health issues. They have brain structure differences and brain function differences. That's very important when you think about treatment of individuals with neurocognitive impairments. Diagnosis is critical to understanding brain function, and adaptive programming can improve outcomes for affected individuals and their families.
We know that brain impairment really does affect outcomes. We know that in our database individuals had more central nervous system impairment than was anticipated. Consensus from experts in the U.S. and a few Canadians who populated the panel suggested that treatment approaches that rely on assumption of normal cognitive functioning are likely to be less effective with individuals with FASD, and that makes sense. That's what you heard from the other individuals who spoke just now.
We also did an interesting study where we worked with mental health centres and substance abuse treatment centres. We did some education with the front-line workers, and we taught them to screen for possible FASD. We collected some data from that. We're analyzing that now to see, if they understood that parental alcohol exposure may be a factor, how they interacted with these individuals and how they changed what they were doing so that they could better improve outcomes.
In terms of what we really need, we need access to capacity for diagnosis, because that's so important. We need standardized data collection or we're never going to be able to make any really good evidence-based decisions on what works and what doesn't work, and what the specific characteristics and matched treatment approaches are. We need training in education. We learned in our study that front-line workers felt a lot more comfortable dealing with individuals who had FASD when they understood the implications of FASD and that these people weren't misbehaving because they meant to. We need more research on specific interventions or supports that improve outcomes for affected individuals and families across the board—across services and across systems.
Thank you. Was I on time?