Patients fighting deadly, rare lung disease issue urgent plea for access to first and only treatment option

TORONTO, May 14, 2013 /CNW/ - Earlier this year, Canadians diagnosed with idiopathic pulmonary fibrosis (IPF) were elated to hear that the first medication was finally available to help them fight this rare and deadly lung disease.  Months later, these patients are surprised and dismayed to be facing barriers to accessing this potentially life-extending treatment, but they refuse to give up their new-found hope.

Despite the severity of the disease, 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) has recommended that public drug programs keep Esbriet® (pirfenidone) out of reach of most IPF patients who are in dire need of the new treatment.

"While we are disappointed with this step in the process, we remain hopeful that the provinces and territories will do what is right and urgently needed, and respond to our urgent plea for access to the first and only treatment for this terrible disease," said Robert Davidson, president and founder of the Canadian Pulmonary Fibrosis Foundation (CPFF). "Too many patients die waiting for treatment, and we will continue our crusade in their memory to ensure others have a chance for improved quality of life."

Hope for a chance to fight back tied to treatment access

In Canada, Esbriet is indicated for the treatment of mild to moderate IPF in adult patients. It has been shown to decrease the decline in lung function, slow the progression of the disease and preserve exercise tolerance. Prior to the approval of Esbriet by Health Canada in October 2012, Canadians diagnosed with this devastating disease had no proven treatment option available to help them, and therefore little hope of fighting back.

Since Esbriet is not yet publicly funded by the provincial or territorial drug programs, patients can only access the treatment through private insurance or personal financial means. This is especially devastating for the senior patient population this disease typically affects, who no longer have private coverage and rely on public drug funding for access to treatment.

"The harsh reality is that until we take that critical next step and Esbriet is funded by provincial and territorial drug programs, many IPF patients who desperately need this medication will have no hope of accessing it. The disease will continue to progress and they will die. That's why an expedited funding decision is urgently needed," added Davidson. "IPF patients all across the country who rely on their governments for drug coverage deserve a long-awaited chance to fight this disease."

About IPF
Idiopathic Pulmonary Fibrosis (IPF) is a rare, progressive and fatal lung disease that has no known cause.  It is characterized by scarring of the lungs, which hinders a patient's ability to breathe. Up to 30,000 Canadians are believed to be affected by all forms of PF, with an estimated 3,000 to 5,000 suffering from mild to moderate IPF. Typically diagnosed later in life, IPF has a life expectancy of just two to five years, which is similar to many other malignant diseases, including lung, breast and colon cancer.  However, some rapidly progressing cases can be lethal within months of diagnosis.

About the Canadian Pulmonary Fibrosis Foundation
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 of the CPFF, who had IPF and received a double lung transplant in January 2010, founded the organization in 2009 to help educate others, and to answer those non-medical questions frequently asked by those suffering with the disease. For more information, visit www.cpff.ca.

SOURCE: Canadian Pulmonary Fibrosis Foundation

Tonya Johnson/Lauren Harrison
Cohn & Wolfe
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