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WATCH: Girl asks province for cash to help fight rare disease

12 year-old needs expensive drug to fight rare form of Cystic Fibrosis

Imagine your little girl is diagnosed with a rare form of cystic fibrosis and the only drug that helps her live a normal life isn't covered by OHIP.

That's what one 12-year-old from Bradford is dealing with, relying on a  $348,000 a year drug to live.

The only way Madi Vanstone can afford it is with her parents' private healthcare and community fundraising.

Before the drug, Vanstone had no energy, had headaches and stomach aches. But now she's running and playing with her friends.

Her mom Beth says the family pays $5,000 out of pocket each month. They have four months worth of cash to keep Madi going, with another planned fundraiser later this month.

The family met with the premier and health minister for 20 minutes this morning, as reveal the province is going to make negotiations with the drug company more transparent.

The premier says that way OHIP could cover it.

All provinces are involved in a back-and-forth to make the drug available under public healthcare in Canada.

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  1. john posted on 03/03/2014 01:18 PM
    god bless u i hope u get it .
    the only problum is unless u are a liberal voter thay really dont care about u . thay have no problum stealing money form tax payers but when ti comes to something like this . thay spend like Scrooge .
  2. a posted on 03/03/2014 03:16 PM
    How can this cost be so high? I'm not convinced its justified.
    1. Angry Bill posted on 03/03/2014 03:53 PM
      @a That's just the total cost. A portion is being paid for by the vendor. Another portion is being paid by her insurance. The remaining amount that she is actually asking OHIP to pay for is something like $60k.

      What I read from Wynne's political speak above is, "Sorry, kid. You're going to die. Keeping you alive isn't in the best interests of the liberal party at this time. Come back after enough people have made it an issue so that it impacts our chances at the ballot."
    2. karen posted on 03/03/2014 06:42 PM
      @Angry Bill I mean the drug company - $345K makes no sense. As for the province paying, it is only being asked to pay $60K. The People want this funded.

      Let's not forget that this drug will likely have a generic brand in 5-7 years whenpatent protection ends, all cures are tremendous learning opportunities and lead to good research, and, saving this girl's health is very worthwhile.
    3. Angry Bill posted on 03/04/2014 11:31 AM
      @karen You will find that just about any drug developed by big pharma will have a hefty price tag. The reason for this is, pharma companies need to make a profit like anyone else, and it takes years of research and development to come up with a new drug.. including all the tests and trials and jumping through bureaucratic red tape to get the stuff approved for human use.. A long, expensive process. This is where the big price tags come from on these sorts of drugs.
  3. Cycl0 posted on 03/03/2014 04:17 PM
    http://www.braatah.com/cannabinoids-and-cystic-fibrosis-a-novel-approach-to-etiology-and-therapy/

    I know this is a problem with regulation....why not use the best herb known to man for the regulation of the body?..it would be 300,000 dollars cheaper. and it is a medical program through Health Canada...cannot hurt to try it out.
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