Diagnosis called crucial to addressing FASD The first, and most crucial, step to effectively preventing and addressing fetal alcohol spectrum disorders is diagnosing sufferers, By Justine Davidson on September 28, 2010 at 3:06 pm
The first, and most crucial, step to effectively preventing and addressing fetal alcohol spectrum disorders is diagnosing sufferers, says one of Canada’s leading FASD researchers.
Dr. Sterling Clarren delivered his message to participants at the Walking Together symposium being held today and tomorrow at the High Country Inn Convention Centre.
“Every system is perfectly organized to deliver the results that are achieved,” Clarren said, quoting American doctor and public health care advocate Don Berwick.
“So,” he continued, “it is not an accident when the results are not those that were hoped for.”
The current system, Clarren said, is not effective in assisting people with FASD, nor preventing new babies being born with a fetal alcohol disorder, because there is a major lag in identifying how many Canadians suffer from the brain damage done when a pregnant mother drinks excessively.
As Clarren pointed out in his keynote speech this morning, not every mother who consumes alcohol has a baby with an FASD, and not all FASD sufferers are easily identifiable by the “elfin” facial features commonly associated with the disorders.
An FASD diagnosis takes a whole gamut of factors into account, beginning with prenatal alcohol exposure, and moving through a list of “functional problems”, including learning disabilities, attention and memory deficits, low IQ and poor motor skills.
Many times, FASD sufferers are not recognized as such because the people dealing with them – teachers, caregivers, police – only see individual problems and don’t add them up to equal an FASD, Clarren said.
Of the very estimated 330,000 people in Canada who have an FASD (the number could be twice or three times as high, Clarren said), only 20,000 have been diagnosed.
In the Yukon, The “questimate” is higher in the North: of the estimated 1,000 Yukoners with an FASD, only 100 have been diagnosed. And while the estimate of babies born with an FASD in Canada is one in 100, it could be five times that here, translating to about 20 births a year.
What would it take to diagnose every sufferers in the territory?
“A very modest health care investment” of about $6,000 per person, Clarren said.
To put that spending into perspective, the doctor pointed out that the treatment for a woman with breast cancer runs at $60,000, and no one would ever suggest the government can’t afford that expense.
The Yukon is in a unique position to identify the scope of the disorder within its borders, he said.
“Finding every (new) case of FASD in Toronto? That’s impossible. Finding 20 people (a year) in the Yukon? We can do that.”
The fact is, Clarren said, the government can’t afford not to fully diagnose the problem, because otherwise money, services, and energy will continue to be expended without tangible results.
To put it bluntly: “No problem – No solution,” Clarren said.
He pointed out a number of solutions that are being proposed or developed, including a recent resolution by the Canadian Bar Association to find alternatives to the traditional criminal justice system for people with FASD. But these valiant efforts “will be garbage” without hard numbers and identified fetal alcohol victims.
The fact is, he said, research and resolutions don’t help actual people without the government will to back them up.
Making a play on the Four Horsemen of the Apocalypse, Clarren blamed the Four Horsemen of the Bureaucracy for government’s inaction on FASD.
“Pestilence: ‘That is beyond out scope.’
“Famine: ‘That is beyond our budget.’
“War: ‘That requires special permission.’
“And Death: ‘Why should we listen to you?’”
Preventing more people from being born with an FASD, and properly serving those Canadians who are suffering today, will take strong advocacy and leadership from outside government, met with agreements on roles and responsibilities from within government, Clarren said.