Funding delay for sole treatment leaves rare and fatal lung disease to progress in Ontario patients

IPF community shifts focus from awareness to access one year after approval of first and only treatment

TORONTO, Sept. 11, 2013 /CNW/ - Ontario patients suffering from idiopathic pulmonary fibrosis (IPF), a rare, progressive and fatal lung disease, have been through many ups and downs in the past year, and continue to fight one of the hardest battles of their lives. Last September marked the first-ever IPF Awareness Month in Canada, with a goal of raising disease awareness among the government and general public alike.  This year, the IPF community has shifted their focus with a direct and urgent plea to the Premier and Health Minister regarding immediate access to Esbriet® (pirfenidone), the first and only treatment approved in Canada for mild to moderate forms of the disease.

Earlier this year, Canadians diagnosed with mild to moderate forms of IPF were thrilled to hear that the first-ever treatment was available to help them fight their disease.  Prior to the approval of Esbriet in October 2012, individuals diagnosed with IPF had no proven treatment options available to them, and therefore little hope of slowing the often rapid progression of the disease.  Despite the severity of IPF, the absence of other treatment options, and a priority review granted by Health Canada based on significant unmet clinical need, the Canadian Expert Drug Committee through the Common Drug Review (CDR) recommended that public drug programs keep Esbriet out of reach.

"The IPF community was deeply disappointed when the Ontario Ministry of Health decided to follow the guidance of CDR regarding funding for Esbriet.  We have lost too many too soon to this dreadful disease to give up our fight, and continue to be hopeful that the Ministry will do the right thing," said Robert Davidson, president and founder of the Canadian Pulmonary Fibrosis Foundation (CPFF).  "Over the past year, we've met with the Minister of Health and other ministry officials educating them on the urgency of this matter.  Currently, this is the only treatment available for Canadians with mild to moderate forms of IPF and it's disheartening that those individuals who need it the most, still can't access it. We are urging the ministry to reconsider its position and help those who suffer from this terrible and deadly disease."

Medical experts frustrated by lack of access to proven treatment
Last September during the first-ever IPF Awareness Month, patients and caregivers alike took to the halls of Queen's Park as an opportunity to educate the Ontario government on IPF, and to express their concerns regarding the gaps in care and lack of treatment. This year the community, joined by leading medical IPF specialists' including Dr. Binnie  from Toronto, has issued a more specific and urgent appeal to government for the public funding of Esbriet through its provincial drug programs, to ensure IPF sufferers can access this approved treatment that is currently beyond their grasp.

"Patients with idiopathic pulmonary fibrosis are faced with a progressive and often lethal disease and have very few treatment options," said Dr. Matthew Binnie, Respirologist, Toronto General Hospital. "It has been an important step forward to have a licensed medication that helps to slow disease progression.  At present many of my patients who might benefit from pirfenidone do not have access to it.  We need provincial funding to ensure access for appropriate patients with mild to moderate IPF."

Denial of access to treatment equal to shock of diagnosis
Since the negative CDR recommendation not to list Esbriet became public, IPF patients and caregivers like Bowmanville resident Laurie Fowler, whose mother Virginia was a healthy 77-year-old enjoying a full life when she was struck with IPF, have been advocating for access to treatment by taking matters into their own hands. Advocates like Laurie are directing their concerns about the delay in public funding for Esbriet to their elected officials asking for support in their fight. MPPs are responding by bringing the issue to the Minister of Health on their constituents' behalf.

"After the initial blow of my mother's diagnosis, it was equally devastating to be turned down by our government at our greatest time of need, for funding for the one and only treatment that could give us hope," said Ms. Fowler today at Queen's Park. "As my mother's disease progresses, my thoughts turn to those fighting this disease in Europe and the UK who receive funding for Esbriet from their governments, and I plead with ours to do the right thing before it is too late for my mother and others across the province."

About IPF in Canada
Idiopathic pulmonary fibrosis (IPF) is an interstitial lung disease with no known cause. Studies suggest that up to 30,000 Canadians are believed to be affected by all forms of pulmonary fibrosis, with an estimated 3,000 to 5,000 suffering from mild to moderate forms of IPF.  The disease is more common in men than women and is usually diagnosed between the ages of 40 and 80 years, with a life expectancy of just two to five years. In patients with IPF, the lung tissue becomes scarred and over time, as the scarring becomes thicker and more widespread, the lungs lose their ability to transfer oxygen into the bloodstream.  As a result, patients become short of breath and the brain and vital organs are deprived of the oxygen necessary for survival. IPF has a higher mortality rate than many other malignancies, including pancreatic, lung and liver cancers.

About the CPFF
The Canadian Pulmonary Fibrosis Foundation (CPFF) is a registered not-for-profit charitable organization established to provide support, hope and resources for those people affected by pulmonary fibrosis. Robert Davidson, president of the CPFF, who had IPF and received a double lung transplant in January 2010, founded the organization in 2009 to help support and educate others, and to answer non-medical questions frequently asked by those suffering with the disease.  For more information, please visit www.cpff.ca.

SOURCE: Canadian Pulmonary Fibrosis Foundation

Tonya Johnson 
Cohn & Wolfe
Office: 647-259-3282
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Lauren Harrison 
Cohn & Wolfe
647-259-3265
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