MPP John O’Toole – Statement on Access to Esbriet – December 11, 2013
IDIOPATHIC PULMONARY FIBROSIS
Mr. John O’Toole: I rise today to bring attention to the fact that we, in Ontario, are failing idiopathic pulmonary fibrosis patients in Ontario today. Last week, I asked the deputy minister to review the funding process and begin funding Esbriet for those who desperately need it to save their lives. There are thousands of Ontarians suffering from IPF whose lives can be improved and prolonged today. This is not a political issue. It’s really about access to health care in Ontario today.
Bryon Miles of Northumberland, Barbara Skinner from Wellington–Halton Hills, Virginia Koury from my riding of Durham, and Hugh Detzler from Bruce–Huron, all deserve access. They are but a few Ontarians who can be helped immediately with approved funding for Esbriet.
Earlier today, my colleague PC MPP Ted Arnott wrote to the Minister of Health to express the benefits that his constituent Barb Skinner received by taking Esbriet. Without Esbriet, Ms. Skinner believes she might not have lived long enough to receive a double lung transplant.
The reality is, Mr. Speaker, that many Ontarians cannot afford Esbriet. The treatment cost is $3,800 every 28 days, or $50,000 per year, for every IPF patient. And that countless patients die while waiting for organ transplants.
The government must take the responsible course of action and admit that the EAP process is broken and begin funding Esbriet for IPF patients across Ontario. This is the right thing to do and it’s the right season to do it. Do the right thing and fund Esbriet.
MPP Kevin Flynn (Oakville) – Statement on Rob’s Ride
Jeff Yurek – Statement on Esbriet
IPF Awareness Month – Queen’s Park – September 11, 2013
Introduction of IPF Delegation:
Hon. Deborah Matthews: I am delighted to welcome people from the Canadian Pulmonary Fibrosis Foundation. Joining us today are President Robert Davidson, Michael Jarvis, Henry Lowi, Larkell Bradley, Ron Lillie, Jean Lillie, Connie Detzler, Hugh Detzler, Laurie Fowler and Roger Chandler. I know they’ll be meeting with many members today. We’re delighted to have you in the House.
Hon. Michael Chan: I would like to also welcome my constituent Mr. Robert Davidson who’s here today. He’s also president of the Canadian Pulmonary Fibrosis Foundation. The foundation will be hosting a reception this afternoon in the legislative dining room from 5:30 p.m. to 7:30 p.m.
Mr. Kevin Daniel Flynn: Speaker, we’re joined this afternoon by some members of the Canadian Pulmonary Fibrosis Foundation. They’re sitting in the east members’ gallery. With us today are Michael Jarvis, Ron Lillie and Jean Lillie. Please welcome them to Queen’s Park.
Mr. John O’Toole: I also would like to recognize those persons suffering with idiopathic pulmonary fibrosis, looking for a cure in Esbriet, which is the immediate drug that they’re requiring. My constituent Laurie Fowler, as well as Robert Davidson, who is the president of CPFF, the Canadian Pulmonary Fibrosis Foundation: Welcome to Queen’s Park. I hope the ministry is listening.
The Speaker (Hon. Dave Levac): Wonderful introduction, and only an introduction.
Mrs. Christine Elliott: My question is to the Minister of Health and Long-Term Care. Minister, many Ontarians living with idiopathic pulmonary fibrosis are not able to obtain the medication that will help slow the progression of this terrible disease. Esbriet, a drug that has been proven to help manage the symptoms, is not at this time on the approved drug formulary. Patients have applied to the Exceptional Access Program to get funding for Esbriet but have been denied, with no clear answer for the denial.
This issue has been before the Committee to Evaluate Drugs for a very long time, yet no decision has been made, and there’s no indication when a decision will be made. Minister, will you commit today to speaking with the committee with a view to obtaining a positive answer with respect to funding as soon as possible?
Hon. Deborah Matthews: I do welcome people who are advocating for this drug today to the Legislature. I do want to say once again, though, that these are not political decisions.
We make decisions on what drugs to fund based on the evidence. There is a process that we go through when we make important decisions about what drugs to fund. With regard to Esbriet, the Canadian Drug Expert Committee has recommended that Esbriet should not be funded because of inconsistent results.
We remain open to new evidence, but at this point the evidence to support the public funding of this drug has not been presented to the Committee to Evaluate Drugs. So we clearly are open to new evidence, but at this time the evidence does not support funding.
Statements made by MPPs
Mr. Kevin Daniel Flynn: It’s a pleasure to rise today and inform the House that September is Idiopathic Pulmonary Fibrosis Awareness Month in Canada, something we should all pay a little bit of attention to, I think. It was established to increase awareness and understanding of this very rare disease. This important day and month is a reminder to all Ontarians of this debilitating and ultimately fatal disease, with no known cure.
It is estimated that up to 30,000 people in Canada are currently diagnosed with pulmonary fibrosis. Of those, between 5,000 and 10,000 suffer from IPF. Today, unfortunately, approximately 5,000 Canadians die each year from this deadly disease. It’s a progressive and it’s a life-limiting disease, and it’s characterized by scarring in the lungs that hinders the exchange of oxygen and carbon dioxide in the body. It makes it extremely difficult for patients to breathe.
Robert Davidson is a double-lung-transplant recipient who founded the Canadian Pulmonary Fibrosis Foundation. Today, Mr. Davidson is leading a delegation of patients suffering with IPF at Queen’s Park to educate us all about IPF. It was a pleasure to sit down with Robert Carew from my riding of Oakville to learn more about IPF last year.
So today, Speaker, I’d like to draw your attention to this month. I’d also like to welcome Robert Davidson, Robert Carew, Michael Jarvis again, Ron and Jean Lillie, and all members of the CPFF delegation to Queen’s Park today
Mrs. Christine Elliott: On behalf of the Ontario PC caucus, I would like to recognize Idiopathic Pulmonary Fibrosis Day at Queen’s Park.
Today, there are an estimated 2,700 people in Ontario living with IPF and roughly 9,000 people in Canada. This disease is more common in men than women and is usually diagnosed between the ages of 40 and 80 years. Currently, there is no cure for IPF. This rare disease causes scarring of the lungs, making it increasingly difficult to breathe. Patients experience increased shortness of breath and reduced physical functioning, with a median survival rate of two to five years.
Today we welcome Robert Davidson, the president of the Canadian Pulmonary Fibrosis Foundation. Robert is joined by other patients currently living with IPF. I’d like to welcome Michael Jarvis, Henry Lowi, Larkell Bradley, Ron Lillie, Connie and Hugh Detzler, Laurie Fowler and Roger Chandler, and their families. The Canadian Pulmonary Fibrosis Foundation will be hosting a reception at 5:30 today in the dining room, and I certainly encourage all members to attend and learn more about IPF and the means of dealing with it through medications.