Government needs to approve funding for Cystic Fibrosis medication for Georgetown and Fergus families
NEWS RELEASE
Ted Arnott, MPP
Wellington-Halton Hills
FOR IMMEDIATE RELEASE
March 26, 2014
Government needs to approve funding for Cystic Fibrosis medication for Georgetown and Fergus families
(Queen’s Park) – The Government needs to come through for Cystic Fibrosis patients and approve the funding of KALYDECO, says Wellington-Halton Hills MPP Ted Arnott.
“While the Government appears to be hiding behind a broken process, families worry and wait for more than a year. When will the Minister announce approval for funding for KALYDECO for Ontario Cystic Fibrosis patients?” Mr. Arnott asked Health Minister Deb Matthews during Question Period on March 25.
KALYDECO is a new drug which had demonstrated great promise in treating Cystic Fibrosis patients who have the G551D mutation. However, KALYDECO is not currently covered by OHIP and is estimated to cost $294,000 a year.
Mr. Arnott first raised the need for funding for KALYDECO in an email to the Minister of Health in December 2012 – more than 15 months ago.
He also personally spoke to the Minister in both February and March of 2013, raised it in the Legislature during debate in March 2013, and followed up again with the Minister in Question Period in May 2013.
“Today I am standing up for Maddie Phipps, and Shannon and Matthew Bain, all of Georgetown, and Lindsey Shaw of Fergus, all of whom have Cystic Fibrosis and all of whom need KALYDECO,” Mr. Arnott told the Minister. “My question to the Minister is simple: why are these families being forced to wait for so long for her to announce funding for KALYDECO?”
Afterwards, Mr. Arnott argued that the Government has an obligation to step up to the plate.
“There is no doubt that it’s expensive,” said Mr. Arnott. “But that’s why we have a public health care system – to make sure that people don’t have to sell their homes to get the health care they need.”
Other members of the Ontario PC Caucus have also been vocal in advocating for funding for KALDYECO for Cystic Fibrosis patients. Simcoe-Grey MPP Jim Wilson, Whitby-Oshawa MPP Christine Elliott, and York-Simcoe MPP Julia Munro have also raised the issue in the Legislature in recent weeks.
Mr. Arnott also acknowledged the outstanding work that Kin Canada clubs have done through the years to support Cystic Fibrosis patients.
“Since 1964, Kin clubs have raised $40 million for Cystic Fibrosis research and care,” Mr. Arnott said. “This service organization has done its part and more, and the Provincial Government now needs to do its part.”
For more information on Kin Canada’s efforts, visit: https://www.kincanada.ca/
For more information about the Cystic Fibrosis Foundation’s work, visit: https://www.cysticfibrosis.ca/advocacy/access-to-medicines/kalydeco/?lang=en
– 30 –
Ted Arnott, MPP
Phone: 416-325-3880
Email: ted.arnott@pc.ola.org
Ontario Hansard – 25-March 2014
HEALTH CARE
Mr. Ted Arnott: My question is for the Minister of Health. As we know, Kalydeco is a new drug which appears to be a miracle treatment for some cystic fibrosis patients, and it gives hope to families with loved ones who are suffering from it.
In recent weeks, we have listened to the government’s lame excuses for the delays in the approval of funding for Kalydeco for cystic fibrosis patients like Madi Vanstone, but it’s not just Madi Vanstone. In my riding, I have been approached by three families who have been affected by cystic fibrosis and to whom Kalydeco represents hope-three families in my riding. Today I’m standing up for Maddie Phipps and Shannon and Matthew Bain, all of Georgetown; and Lindsay Shaw of Fergus-all of whom have cystic fibrosis and all of whom need Kalydeco.
My question to the minister is simple: Why are these families being forced to wait so long for her to announce funding for Kalydeco?
Hon. Deborah Matthews: I want to be very clear that Kalydeco is a drug that offers real hope for some people with cystic fibrosis. I know that. I think it’s important, though, that we do negotiate for these drugs. We have worked on a pan-Canadian approach on this drug and 29 other drugs, and we have successfully reached agreement with drug companies at prices that make us able to fund more drugs for more people.
For the opposition parties to suggest that we simply pay whatever price the pharmaceutical company says they want to charge us is simply irresponsible. It was not their practice when they were in office, and I can assure you that it’s important that we negotiate the prices. I hate to say this, but some pharmaceutical companies are relying on this kind of public pressure so they can charge higher prices than they’re charging in other jurisdictions.
The Speaker (Hon. Dave Levac): Supplementary.
Mr. Ted Arnott: Well, Mr. Speaker, the minister knows we’re standing up for our constituents, and she should understand that. It has now been more than a year since I first raised this issue with the minister, and we’re still waiting.
I first raised the issue of Kalydeco with the minister in December 2012, in an email to her office. I spoke to her personally on February 20 last year, and again on March 20 last year. I raised the need for Kalydeco funding in the Legislature in debate a year ago tomorrow. I followed up in question period on May 2 last year, when I specifically asked the minister to commit to doing everything she could to expedite the process to approve this drug. While the government appears to be hiding behind a broken process, families worry and wait for more than a year.
When will the minister announce approval for funding for Kalydeco for Ontario cystic fibrosis patients?
Hon. Deborah Matthews: Speaker, I think it’s important that the member opposite acknowledge that the pharmaceutical company, Vertex, a US-based pharmaceutical company, was funded to the tune of $75
million, plus an additional $75 million promised, for the development of this drug by the Cystic Fibrosis Foundation in the United States. This research and development was funded by the public. I think when people donated to that cause, they expected that patients would benefit. I think the company, Vertex, needs to be held to account. They need to negotiate. We ought not to pay higher prices for this drug than in other jurisdictions.
If you really care about this, I urge you to contact the pharmaceutical company and say, “Take your responsibility to the people with cystic fibrosis seriously. Negotiate with us as Canadians. Canadian children”-
The Speaker (Hon. Dave Levac): Thank you.