Canadian patients with rare lung disease still dying without access to only treatment

IPF patient community launches video plea to provinces for a chance to live longer

MARKHAM, ON, Feb. 24, 2014 /CNW/ - Too many lives have been put at risk and lost to idiopathic pulmonary fibrosis (IPF) in Canada since the Canadian Pulmonary Fibrosis Foundation (CPFF) first took its fight for access to treatment to government policy and decision makers across Canada last spring. This week, in advance of International Rare Disease Day on February 28th, Canadian IPF patients and caregivers are appealing once again to their governments for urgent affordable universal access to Esbriet (pirfenidone), the first and only medicine approved in Canada to treat mild to moderate forms of IPF. Esbriet has been proven to slow the progression of this rare, debilitating and ultimately fatal lung disease that scars the lungs so severely, patients are no longer able to breathe.

"When you have a disease that has a life expectancy of just a few years, the unfortunate reality is that these patients just can't wait," said Dr. Shane Shapera, Respirologist at Toronto General Hospital.  "As it stands right now, I have two tiers of patients - those who have private insurance and can access treatment, and those without private insurance who cannot access treatment.  In actuality, IPF patients are running out of time, and sadly, many of them will likely die before they get a chance to start on therapy for their disease."

Seniors hardest hit by restricted access

Despite the severity of IPF, the absence of other treatment options and advice from leading IPF experts, provinces and territories across Canada have chosen to deny funding for Esbriet (pirfenidone).  The governments of 13 European countries made the right choice to fund Esbriet based on the same clinical evidence.  The IPF community questions why the provincial and territorial governments are keeping Esbriet out of reach for many who are in urgent need of treatment, especially seniors who rely exclusively on public funding for access to medication.

"Speaking as a senior living with IPF and on behalf of the IPF patient community in Canada, it's absolutely devastating that our governments are turning their backs on us, when we're in such desperate need of their help," said Larkell Bradley, a sixty-six-year-old IPF patient from Ontario. "My disease continues to rapidly progress, and having a brother that passed away from IPF - I know exactly where my health is heading."

CPFF launches video plea for access to treatment in recognition of International Rare Disease Day

This year, Rare Disease Day focuses on the overall theme of care, encouraging stakeholders to work together to provide improved care for those living with, or affected by, rare disease.

To garner the attention and care they deserve, Canadian IPF patients with support of the CPFF launched an online video to communicate the despair and hopelessness they feel, as their chance at a longer life dwindles.

The IPF patient community is hopeful that this video will compel the provinces and territories to finally do what's moral and ethical: swiftly fund Esbriet, making it accessible to those who need it - before it's too late.

"Given the ups and downs the IPF community has experienced since the last Rare Disease Day, it is integral that we remain strong and focused on our urgent request for governments across Canada to provide public funding for the first and only approved treatment for this rare but deadly disease," said Davidson. "In a country as wealthy and developed as Canada, it's deplorable that while IPF patients are fighting to breathe, they must use what little energy they have left to fight for necessary care, a better quality of life, and a chance to live a longer life."

Anyone interested in learning more about the IPF community's fight for access to treatment can view the video here.

About IPF:

Idiopathic pulmonary fibrosis (IPF) is an interstitial lung disease with no known cause, characterized predominantly by fibrosis (scarring) of the lungs.  In patients with IPF, the lung tissue becomes scarred and over time, the scarring becomes thicker and more widespread, causing the lungs to 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.  Studies suggest that 5,000 to 8,000 Canadians suffer from IPF, with an estimated 3,000 to 5,000 having a mild to moderate form of the disease.  There are an estimated 3,000 deaths each year in Canada associated with this disease, a death rate higher than most 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 affected by pulmonary fibrosis.  Robert Davidson, president and founder of the CPFF, who had IPF and received a double lung transplant in January 2010, created the organization in 2009 to provide education and support for people affected by pulmonary fibrosis, and to help answer those non-medical questions frequently asked by those suffering with the disease.

Video with caption: "IPF patient community launches video plea to provinces for a chance to live longer". Video available at:

SOURCE: Canadian Pulmonary Fibrosis Foundation

For further information:

Tonya Johnson
Cohn & Wolfe
416-924-5700 ext. 4077

Lauren Harrison
Cohn & Wolfe
416-924-5700 ext. 4034

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