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VIDEO: Ontario Healthcare System Failing 12 Year Old Madi Vanstone: McGuinty-Wynne Liberals Continue to Refuse Lifesaving Treatment

(March 5, 2014) Today, Wilson questioned the Health Minister again over her continued refusal to fund Kalydeco for Beeton resident 12 year old Madi Vanstone. Watch the video or read the Hansard here. 


Wednesday 5 March 2014


Mr. Jim Wilson: My question is to the Minister of Health and Long-Term Care. Minister, you and the Premier say you’re going to push hard to cover the cost of Kalydeco for 12-year-old Madi Vanstone and others with cystic fibrosis. It has been seven months since I first raised this issue with you, and what have you done? Nothing.


Who do you think you’re fooling with this charade? You’re the only one who can make this decision, not Alberta, not the Pan-Canadian Pricing Alliance, but you. You’re the health minister. Health care and the well-being of little Madi are your responsibility. Stop playing games. Stop stringing Madi and her friends along. Make a decision. Are you going to cover Kalydeco?


Hon. Deborah Matthews: As a former health minister, you know as well as anyone that these are difficult decisions that come to health ministers. We have taken the politics out of determining what drugs we cover and what drugs we don’t—based on evidence. I can tell you that Kalydeco is a very promising drug that offers real hope and better outcomes for patients, which is why we are working at a pan-Canadian level to be able to purchase this drug.


I think it’s really important that the member opposite understands that we have had great success working on a pan-Canadian basis to get better prices for drugs. It’s time for Vertex, the US-based manufacturer of this drug, a publicly traded company, to step up and participate in these negotiations.


The Speaker (Hon. Dave Levac): Supplementary?


Mr. Jim Wilson: That answer simply isn’t good enough. Yes, I am a former health minister. In the past, we would cover the drug for extraordinary circumstances. Once we had a number of patients on the drug, we would work with other provinces to go back and say, “We’re your number one worldwide customer. Give us a better price.” And we would often get a better price.


You created this Pan-Canadian Pricing Alliance so that you and other health ministers across the country, I guess, can hide behind it. At the end of the day, no matter what any other province says and no matter what this committee says, you and you alone will make the decision on whether you will fund Kalydeco.


It’s a smokescreen you put up. Madi is not buying it. Other children who need help are not buying it. No one on this side of the House is buying it, and none of your people should be buying it either.


At the end of the day, it’s your decision. Will you do the right thing and help Madi and her friends?


Hon. Deborah Matthews: I think it’s important that the member opposite recognize that the Pan-Canadian Pricing Alliance, so far, has saved Canadians $50 million as they have worked to negotiate the best possible price for 29 drugs. What that means is that we can fund more drugs for more people.


I do want to remind the former Minister of Health—I have a quote from Hansard from 1996 here. The then Minister of Health said, “As you know, the Minister of Health doesn’t directly approve the alternative. The medical committee that’s called the Drug Quality and Therapeutics Committee, which is the same committee that’s been around for many years ... makes the final determination.”


This member opposite is playing politics. I find that offensive. We are doing what we can for Madi and for all people who need access to these rare drugs. 



Here is the question the Health Minister refers to in her response...

Ontario Hansard - 20-November1996


Mr Sean G. Conway (Renfrew North): On this, national Child Day, I have a question to the Minister of Health. It concerns a nine-year-old girl living with her parents on a dairy farm in North Dundas county south of Ottawa. The nine-year-old girl's name is Kayleigh Boyd, and Kayleigh suffers from Rett Syndrome, a very serious neurological disorder that has imposed very significant challenges not only Kayleigh but on her family, which is continuing to care for her in their farm home.


Kayleigh is covered under the Ontario drug benefit program, but there's a problem. The problem is this: She requires a special formula because she's tube-fed. She has to be tube-fed. The special formula contains milk protein and she's allergic to that product. Her doctor, a well-known paediatrician in Ottawa, has prescribed an alternative that is medically acceptable and, as it happens, is cheaper; it's about half the price of that which has been suggested by your officials at the Ontario drug benefit program. But the alternative has not been approved by your officials. Will you, for the health and wellbeing of this nine-year-old girl, use your influence to approve the alternative?


Hon Jim Wilson (Minister of Health): I would be happy to look into the matter. As you know, the Minister of Health doesn't directly approve the alternative. The medical committee that's called the Drug Quality and Therapeutics Committee, which is the same committee that's been around for many years in the province, makes the final determination. I will certainly expedite the process, though.


Mr Conway: Minister, this family is going to extraordinary lengths to look after their nine-year-old daughter at home. They have the option to have that child institutionalized, where the cost would be $80,000 a year and there would be no question about any of this nourishment that nine-year-old Kayleigh must have for her health and wellbeing. If you are part of a Common Sense Revolution, will you use the powers vested in you to rescue this nine-year-old girl and her family from this bureaucratic Bermuda Triangle that continues to cause them so much grief and so much hardship?


Hon Mr Wilson: Yes, I will do everything humanly possible to help them.








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