Rare lung disease patient "Watch List" tracks impact of restricted access to only treatment option

One Rare Disease Day later and Ontario IPF patients still dying without access to treatment

TORONTO, Feb. 24, 2014 /CNW/ - Too many lives have been put at risk and lost to idiopathic pulmonary fibrosis (IPF) in Ontario since the Canadian Pulmonary Fibrosis Foundation (CPFF) first took its fight for access to treatment to Queen's Park. Today, in recognition of international Rare Disease Day, patients and caregivers were back once again with a personal appeal to the Ontario government for urgent access to Esbriet (pirfenidone), the first and only medicine approved in Canada to treat 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.

Desperate IPF patients keep urgent plea top-of-mind with government 

To address the urgent need for access to treatment, members of the IPF community once again called on The Honourable Deb Matthews, Minister of Health and Long-Term Care, to provide affordable access to Esbriet for IPF patients in Ontario without further delay.  The CPFF introduced the Ontario IPF Patient Watch List to MPPs to help them monitor IPF patients in their constituencies who are anxiously awaiting publicly funded access to Esbriet.

"Patients keep dying from IPF because without a treatment to slow it down, this disease kills often very suddenly and quickly," said Robert Davidson, who was diagnosed with IPF in 2007 and received a double lung transplant two years later. "By putting faces to this disease constituency by constituency, we hope that MPPs from all parties will come together and press the Ministry of Health to do what is moral and ethical and fund Esbriet for IPF patients now - before it is too late and we watch those faces tragically disappear from the list."

Copies of the Watch List were hand-delivered to various constituency and Queen's Park offices by the CPFF and some members of the IPF community in Ontario with a direct message to the Minister of Health and Long-Term Care.  Despite the severity of IPF, the absence of other treatment options and advice from leading IPF experts, Ontario has chosen to deny funding for Esbriet (pirfenidone), the first and only effective treatment for IPF.  The governments of 13 European countries made the right choice to fund Esbriet based on the same clinical evidence.  Why is Ontario keeping Esbriet out of reach for many who are in urgent need of treatment, especially seniors who rely exclusively on the provincial drug program?

"Speaking as a senior living with IPF and on behalf of the IPF patient community in Ontario, it's absolutely devastating that our Premier and Health Minister 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 North York, this morning at Queen's Park.  "My disease continues to rapidly progress, and having a brother that passed away from IPF - I know exactly where my health is heading."

"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."

CPFF joins forces with rare disease community for improved patient care

On February 28, hundreds of patient organizations around the world will band together to recognize International Rare Disease Day, through participation in education and awareness-raising activities.  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.

"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 to the Ontario government to provide public funding for the first and only approved treatment for this rare but deadly disease," said Davidson. "In a province like Ontario, 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 a new video here which includes patients, caregivers and experts sharing their stories.

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: "Video: IPF patient community launches video plea to provinces for a chance to live longer". Video available at: http://stream1.newswire.ca/cgi-bin/playback.cgi?file=20140224_C6826_VIDEO_EN_37073.mp4&posterurl=http://photos.newswire.ca/images/20140224_C6826_PHOTO_EN_37073.jpg&clientName=Canadian%20Pulmonary%20Fibrosis%20Foundation&caption=Video%3A%20IPF%20patient%20community%20launches%20video%20plea%20to%20provinces%20for%20a%20chance%20to%20live%20longer&title=CANADIAN%20PULMONARY%20FIBROSIS%20FOUNDATION%20%2D%20Rare%20lung%20disease%20patient%20%22Watch%20List%22%20tracks%20impact%20of%20restricted%20access%20to%20only%20treatment%20option&headline=Rare%20lung%20disease%20patient%20%26quot%3BWatch%20List%26quot%3B%20tracks%20impact%20of%20restricted%20access%20to%20only%20treatment%20option

Image with caption: "Rare lung disease patient "Watch List" tracks impact of restricted access to only treatment option (CNW Group/Canadian Pulmonary Fibrosis Foundation)". Image available at: http://photos.newswire.ca/images/download/20140224_C6826_PHOTO_EN_37075.jpg

SOURCE: Canadian Pulmonary Fibrosis Foundation

Tonya Johnson       
Cohn & Wolfe
416-924-5700 ext. 4077
[email protected] 

Lauren Harrison 
Cohn & Wolfe
416-924-5700 ext. 4034
[email protected]