Thursday, September 08, 2005

Ontario to extend screening of newborns for inherited disorders

4 million dollars in the first year to help dozens of children in Ontario?
This seems like a lot of money for so few cases, am I becoming conservative in my old age? Seriously, I think my mind has been poisoned, because the first thing I thought when I read this article was, why can't the parents pay for whatever tests they want and leave the rest of us out of it.
On the other hand it's probably not that my left wing principles have slackened so much as I resent all these #$$%# breeders, with their thousand dollar strollers, that are more like child yachts running over my toes and blocking me at every turn, who want special treatment everywhere they go and have their hands out at every turn. I know this comment is going to come back and bite me in the ass at some point when I have children and want special treatment, but that's how it goes.
Last Updated Thu, 08 Sep 2005 08:46:54 EDT
CBC News
The Ontario government is going to extend its screening program of newborns for inherited disorders. Babies are currently tested for two diseases. Under the new program, they will be tested for an additional 19.

Ontario Health Minister George Smitherman (CP file photo)
These rare metabolic disorders are difficult to diagnose through symptoms. Once detected, many can be handled with a careful diet and treatment.
Tammy Clark is founder of Save Babies Through Screening Foundation of Canada. Her website explains the importance of screening.
"Affected babies are at risk of mental retardation, physical disabilities and even death if they are not diagnosed and treated early. Comprehensive newborn screening gives you the opportunity to protect your baby from the preventable complications of undiagnosed problems. If your baby is affected, newborn screening can play a key role in allowing you child to live a normal life."
However, there is no national standard for newborn tests. While some tests are universally conducted, screening for others is done in just one or two provinces.
In 2002, Tammy Clark's nine-month-old daughter Jenna died of MCAD, a metabolic disorder that could have been detected with a $40 test.
"It should not be baby roulette, or winning the baby lottery," said Clark. "It shouldn't be that those in Saskatchewan that have MCAD are living normal healthy lives, in the meantime I have to go and visit my daughter at the cemetery. This is not right."
Despite the extension of Ontario's program, it still will test for far fewer disorders than in other jurisdictions like New York's 44 tests and California's 75.
Ontario Health Minister George Smitherman says his province's program represents a major advance and could be extended further.
The startup cost of the Ontario tests is $2 million with an annual price tag of another $2 million.

2 comments:

Anonymous said...

Jennifer,

The tests can be fairly expensive in some states (in the U.S.) however, I don't know the cost in Canada. The reason for this article is to make the screening mandatory so that parents don't have to ask for the tests to be done - they are already done. I was not offered these tests when my daughter was born, nor were they mentioned to me. Now my daughter is severely disabled even after having one year of healthy, "normal" life. You can read her story at www.thelilyfoundation.org
Take Care,
Sarah Kordis

tammy clark said...

Jennifer,
I recently came across your comments regarding the Ministry of Health and Longterm care's decision to expand the provinces newborn screening program.
I take it from your comments that you are not a parent. If you looked into this issue a bit further you would note that many innocent children are losing their lives or becomming severely neurologically or physically damaged for the lack of a screening test. The cost of which runs from between $25.00 to $100.00 per child. I surely think that my daughters life was worth more than a mere $25.00!!!!

Bottom line is if the government is not willing to provide the comprehensive newborn screening to assist health care providers in the early detection of these "silent" disorders, at the very least they have a moral duty to educate the public that the service is available if they want to pay for it on their own.

Unfortunately families are being "educated" about this issue after the fact.
Your tax dollars are going towards paying for on going care for severly disabled children who with early detection of their disorders would most likely be living "normal" healthy lives.

For more information please visit our website!!!!
www.savebabiescanada.org
Sincerely,
Tammy Clark
Mom to Jenna (Feb 17/02-Nov22/02)-MCADD