Saturday, 8 September 2012

Newborn Screening

One person dies from cystic fibrosis in Canada each week.

That is excruciatingly frightening.

1 in every 3,600 children born in Canada has cystic fibrosis.

Provinces that have provincially-funded newborn screening programs:
  • Alberta
  • Ontario
  • British Columbia
  • Saskatchewan
  • Manitoba

Cystic Fibrosis Canada (CFC) sent out letters to the Atlantic Canada Health Ministers asking them to implement the same program. You can read it here.

A separate letter was sent to the party leaders in Quebec asking them for their commitment to implement CF newborn screening in Quebec. You can view that here. At this point in time we know that the Parti Québécois won the election. This was their loose reply.

CFC explains the importance of newborn screening, "Early diagnosis for cystic fibrosis through newborn screening allows for immediate intervention and treatment. Early interventions have been shown to result in improved height, weight, and cognitive function, help maintain healthy respiratory function, and may reduce hospitalizations and increase life expectancy. Ultimately, newborn screening can lead to longer, healthier lives.

Without newborn screening, irreversible damage to the lungs and digestive system may have already occurred at the time of diagnosis. By that time, parents and families will have endured months or years of anguish trying to understand their child’s health condition before cystic fibrosis is finally diagnosed."

Click here to listen to Melvin Jay (CFC - PEI Chapter President) and Ken Chan (Vice President, Advocacy, Research and Healthcare at CFC) advocate for newborn screening on CBC's Mainstreet PEI.

Click here to watch a beautiful video of a 4 year old with CF and your heart will ache with the need to do something to help.

Everybody wants all babies to have the best chance at a healthy, happy and long life, right?

A baby like this...

If you live in a province that has an active newborn screening program - that's beyond awesome. High Freaking Five!

For those of you who live in Quebec - hit up the Parti Québécois, more specifically, Pauline Marois.

For those of you in Atlantic Canada, here are the Health Ministers you can hound:

Nova Scotia: Honourable Dave Wilson, Minister of Health and Wellness, Halifax
New Brunswick: Honourable Madeleine Dubé, Minister of Health, Fredericton
PEI: Honourable Doug Currie, Minister of Health and Wellness, Charlottetown
Newfoundland: Honourable Susan Sullivan, Minister of Health and Community Services, St. John’s

Join me in advocating for newborn screening.

Let's help some babies, shall we?


  1. Here, Here!
    It's time to turn our governments around so we collectively view healthcare with a proactive approach! While there is certainly a cost to screening (for any illness), it doesn't come close to the cost of hospitalization for critical care, and what cost is our government assigning to the suffering and lost opportunities for the patients and their families?
    Phone and write your MP!

  2. I was speaking with a former nurse from the CF Clinic on Wednesday of last week. What a woman! she was awesome! she mentoined a young lady here in the valley was just finally diagnosed at the age of TWENTY!!! her sweat test came back negative so they didn't consider CF again- that blows my mind! Screening is so important. My husband and I were fortunate enough to have genetic testing done and they put a rush on it whlie I was pregnant due to two different strands of the CF gene in my family. I am not a carrier. But the amount of inforamtion we received was incredible. Screening NEEDS to be mandatory - I agree with Pamela- the cost is minimal if you can cut down on critical care and get diagnosis early. ON a different note- we are doing the CF walk in May and are starting our fundraising NOW

    1. Ya, it happens. Crazy, huh?

      Yay for doing the CF walk!!!

  3. Hi Jess,
    My name is Paulina and I work for Sandra Rinomato, who has sent me to your blog.
    Very inspiring! It's refreshing to see how positive you are and encourages me to remember to live/laugh. I wanted to let you know that I'm going to write to these health ministers to advocate for newborn screening.

    All the best,
    Paulina Vu