Government needs to approve funding for new Cystic Fibrosis medication

NEWS RELEASE
Ted Arnott, MPP
Wellington-Halton Hills
FOR IMMEDIATE RELEASE
March 28, 2013

Government needs to approve funding for new Cystic
Fibrosis medication

(Queen’s Park) – A new drug is giving Cystic Fibrosis patients hope for the future, and they are
awaiting provincial Government approval for its funding.

On March 28, Wellington-Halton Hills MPP Ted Arnott raised the issue in the Ontario Legislature
and called on the Government to approve funding for KALYDECO, a new medication which has
shown great promise in treating some forms of CF.

Mr. Arnott was speaking to Bill 11, a bill dealing with Ontario’s Air Ambulance service. He noted
that the Liberal Government’s mismanagement of the Ornge Air Ambulance service has wasted
hundreds of millions of dollars that could otherwise go toward much needed frontline health care
services for Ontarians.

To prove his point, Mr. Arnott told the Legislature about the case of Madison Phipps, a 17 year
old Georgetown resident who has suffered from Cystic Fibrosis from birth.

“A new medication called KALYDECO has recently been approved by Health Canada,” said Mr.
Arnott. “For some Cystic Fibrosis patients, it promises to be almost a miracle cure.”

“Cystic Fibrosis Canada says that KALYDECO is the first therapy that targets the underlying
cause of CF. It helps to improve the function of the defective protein, leading to better lung
function, weight gain, and lower sweat chloride levels,” Mr. Arnott explained.

“KALYDECO shows the greatest promise for CF patients who have Cystic Fibrosis with
something called the “G551D mutation,” Mr. Arnott continued. “Apparently, just over 100
Canadians with CF have this particular mutation. Maddie Phipps is one of them.”

However, KALYDECO currently not covered by OHIP and it is estimated that the drug would
cost $294,000 a year.

Earlier this week, the Canadian Drug Expert Committee recommend that KALYDECO be on the
formulary listing of public funded drug plans for the treatment of Cystic Fibrosis in patients age
six and older who have the G551D mutation.

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Mr. Arnott noted that he had raised the issue with Health Minister Deb Matthews several times
since learning of the potential of KALYDECO in helping patients like Madison Phipps.

“Now, it is up to the Minister to act, and make KALYDECO accessible to CF patients,” said Mr.
Arnott. “I again urge her to do so without delay, so that patients like Maddie can have access to
this life saving drug.”

(Attached: Text of Mr. Arnott’s speech in the Ontario Legislature, March 28, 2013)

– 30 –

Ted Arnott, MPP
Phone: 416-325-3880
Email: ted.arnott@pc.ola.org

Ontario Hansard – 28-March 2013

Mr. Ted Arnott: As I rise in the Legislature this morning to speak to Bill 11, An Act to amend the
Ambulance Act with respect to air ambulance services, I am mindful of the concerns of my constituents in
Wellington-Halton Hills first and foremost. I also consider Bill 11 in the context of the high personal
regard that I have for the Minister of Health and Deputy Premier.
From speaking with two former Ministers of Health in the province of Ontario who are my friends, I
know that being the Minister of Health is one of the most challenging jobs in government at any level. I
believe it is more challenging even than being Premier. The complexity of the issues, the sheer volume of
the work itself, and the need to ensure political accountability for the whole health care system are
staggering. I do not envy the minister her responsibilities.
For my part, I’m glad to have what I consider to be an excellent working relationship with this Minister of
Health. I appreciate the interest she has shown in Wellington-Halton Hills. She visited our riding just
before the election, in August 2011, to announce up to $2.6 million for the Georgetown Hospital’s
ambitious renovations, including an emergency room addition and a diagnostic image renovation project.
Yes, we applauded the minister when she visited our riding to make that announcement. This project is
now well under way. I drop by the hospital frequently to view its progress. I know that the hospital
foundation is continuing to raise funds. I hope that the minister will be able to visit us again when the
Georgetown Hospital celebrates the official opening of the new ER and CT scanner suite.
The minister was kind enough to visit Centre Wellington last December 6 to reaffirm the government’s
commitment to building a new Groves Memorial Community Hospital. We welcomed the minister and
together unveiled a sign where the new hospital is planned to be built later on in this decade.
Mr. Speaker, I have always been willing to reach across the partisan divide in this House and work with
members from other parties in the interests of my constituents. I’ve been here for 22 and a half years, and
only eight of those years in government, so I guess my experience in many respects has been serving in
opposition. You work with the government of the day to advance the issues that are of concern to your
constituents. I believe that as members of provincial Parliament, we should demonstrate respect for each
other and our mutual roles, as our constituents would expect.
Personal considerations aside, there are real political differences between our respective parties on many
issues. In opposition, it is our responsibility to hold the government of the day to account, to point out the
flaws and drawbacks of its policies, to recommend constructive alternatives and to hold the government
responsible for its actions. This we must do on Bill 11.
This government must believe in recycling; they have recycled themselves. Theoretically, there’s a new
provincial government, but the list of similarities between the McGuinty government and the Wynne
government is long; the list of differences is hard to yet determine. In fact, the new Premier said that the
reason she ran to be Premier was that she was so proud of the record of the McGuinty government. I was
astonished to hear her make that statement on CBC Radio just after she was elected leader of the Liberal
Party. Does she now regret making it? Perhaps, as she proceeds to attempt to turn the page and put her
own stamp on the government’s policy agenda.
I have said that the government appears to be in denial and oblivious to the significant economic
challenges that the province faces today. Whether it’s the jobs challenge-565,000 Ontarians are
unemployed; the deficit challenge-the most recent estimate is $11.9 billion; the rising provincial debt-

$258 billion; or the responsibility for cancelling the gas plants to save marginal Liberal seats that cost
hundreds of millions of dollars, the provincial government carries on as if these problems don’t even exist.
But they do believe in recycling, as I said earlier. In this House, they are recycling many of the
government bills that were introduced last year by the McGuinty government but died on the order paper
when the House was prorogued on October 15. Bill 11 is the recycled Bill 50. The government would
have us believe that Bill 11 is the legislative solution to the Ornge air ambulance scandal. The minister
wants us to believe that she has taken appropriate action to fix the problems in our air ambulance services.
We all know the sordid details. It is a shocking story of wasteful spending, lack of accountability, lack of
transparency, and inadequate oversight. Every week, there seem to be more revelations coming out of the
public accounts committee that command our attention and prolong the infamous saga. We also know that
there is an ongoing police investigation. Bill 11, we’re told by the government, is the solution. They say
this even though the committee investigation continues and many questions remain unanswered.
Here are some of our caucus’s main concerns. We say that there is little of substance in this legislation.
This bill is simply a means of providing political cover for the government’s failure to provide important
leadership. Its biggest single weakness is that it perpetuates the existing structure of the air ambulance
service rather than recognize that the structure is flawed and requires direct oversight by the Minister of
Health. The bill plays lip service to whistle-blower protection but limits the scope of that protection. It
fails to provide across-the-board protection for whistle-blowers. It imposes limits on which individuals
are protected and who they can approach with that information.
0950
Instead, we say the legislation ought to provide for a formal process through the Ombudsman, which
would ensure proper protection and follow-up. We say that the bill is an attempt to divert attention away
from the fact that the minister has had the power to hold Ornge and its board accountable from the very
beginning for the Ornge saga. The minister had the power to intervene at Ornge under article 15 of the
original Ornge performance agreement, as well as the Independent Health Facilities Act. The government
has never adequately refuted these facts, and these are some of the reasons we speak against Bill 11 in its
present form.
My colleague the member for Newmarket-Aurora has been absolutely tenacious in holding the
government to account for the problems at Ornge air ambulance. He deserves enormous credit for the
work he has done to bring these issues to light.
Our Ontario PC health critic and deputy leader, the member for Whitby-Oshawa, is a respected voice in
this House, and she has also offered a principled critique of the government’s actions in this regard. On
Monday of this week, she spoke at length to Bill 11 and in her remarks indicated that the Ornge air
ambulance scandal has cost Ontario taxpayers at least $300 million.
Health care spending scandals seem to be a specialty of this Liberal government. We are reminded of the
eHealth debacle, where a billion dollars was spent with very little to show for it, as the Auditor General
confirmed, other than Liberal-friendly consulting firms billing the government for questionable fees.
Because of these repeated scandals and the stories that drag on and on, over and over again, I’m afraid to
say that some have almost become inured to health spending scandals. We’ve become hardened; they
don’t faze us anymore, yet faze us they should. Every dollar wasted on eHealth or the Ornge air
ambulance service is a dollar that should have and could have gone to front-line care for patients in
Ontario.

Who in this House could not furnish, on short notice, a list of health care priorities that need funding in
their ridings? I suspect that every single member could easily bring the Minister of Health a long list of
funding priorities in their ridings which would present a noticeable improvement in health services for
their constituents. We can all identify needed improvements in health care.
Let me tell you about one of those health issues which was recently brought to my attention. Madison
Phipps is a 17-year-old girl from Georgetown. She has cystic fibrosis. Since she was born, she has spent
more than 250 days in the hospital. Since becoming the MPP for Halton Hills in 2007, I have come to
know Maddie’s parents, Dr. Nigel Phipps and Shelley Phipps, through their community leadership and the
numerous organizations which they support in Georgetown.
I won’t go into the details of Maddie’s treatment through the years, but suffice to say that she has
courageously endured it all, and at the same time, she has maintained a sense of hope for the future. That
hope has not been misplaced. A new medication called Kalydeco has recently been approved by Health
Canada. For some with cystic fibrosis, it promises to be almost a miracle cure. Cystic Fibrosis Canada
says that Kalydeco is the first therapy that targets the underlying cause of CF. It helps to improve the
function of the defective protein, leading to better lung function, weight gain and lower sweat chloride
levels. For some CF patients, access to Kalydeco could lead to a longer, healthier life. Kalydeco shows
the greatest promise for CF patients who have cystic fibrosis with something called the G551D mutation.
Kalydeco, at present, is prohibitively expensive. It is estimated that the drug would cost $294,000 a year.
No family could afford that, but isn’t that why we have a public health care system? Just before
Christmas, I emailed the minister’s office to ask for her help on this. Her staff got back to me and
informed me that the drug’s manufacturer, Vertex Pharmaceuticals, had made a submission, which was
before the Canadian Drug Expert Committee. This committee is responsible for making recommendations
to provincial and territorial drug plans.
When the House resumed sitting on February 20, I spoke to the minister personally, informing her of this
issue and asking for her help. I followed up again last week, on March 20, reminding her of Madison
Phipps and the need to expedite consideration of funding for Kalydeco.
We learned just this week that the Canadian Drug Expert Committee has recommended Kalydeco to be
listed on the formulary listing of publicly funded drug plans for the treatment of cystic fibrosis in patients
age six and older who have the G551D mutation. Now it’s up to the minister to act and make Kalydeco
accessible to CF patients. I urge her to do so without delay so that patients like Maddie can have access to
this life-saving drug.
Going forward, if the government gives greater attention to eliminating wasteful spending through better
oversight and more effective accountability, then precious health dollars can go to life-saving patient care
instead of being wasted on what the Ombudsman calls the “maladministration horrors that have plagued
Ornge.