Rare lung disease community urges government for support
EDMONTON, Nov. 20, 2013 /CNW/ - Albertans living with idiopathic pulmonary fibrosis (IPF), a rare, progressive and fatal lung disease, gathered today at the Legislative Assembly of Alberta with a goal of raising disease awareness among the government and general public alike. Led by The Canadian Pulmonary Fibrosis Foundation (CPFF), IPF patients, their caregivers and medical experts from across the province participated in meetings with government officials to increase their awareness and understanding of this progressive, debilitating disease that has no known cause, and ask for improved access to treatment and support.
"We are here today to make government officials aware of our disease and that there are currently not enough treatment and support options for patients living with IPF in Alberta," said Robert Davidson, President and Founder of the Canadian Pulmonary Fibrosis Foundation. "It is vital that those facing the hardships of this devastating disease have the necessary tools and resources in place for support and education, and that patients are granted affordable access to available treatment options."
A significant unmet medical need
Until recently, Canadians diagnosed with IPF had no proven treatment options available to them other than a lung transplant, which is only considered in severe circumstances and has a wait list of about two years in Alberta. Esbriet (pirfenidone) was approved by Health Canada in October 2012 for the treatment of mild to moderate forms of the disease, but is not yet publicly funded in Alberta. Leading experts in the field of interstitial lung disease feel that increased disease awareness and education within government will help make the needs of IPF patients a priority.
Dr. Charlene Fell, Chair, Canadian Thoracic Society Clinical Assembly on Interstitial Lung Disease; Director, University of Calgary Interstitial Lung Disease Program; and Site Chief, Division of Respirology, South Health Campus was in attendance alongside other health care providers to offer a clinical perspective on how care and treatment can be improved for IPF patients.
"There is a significant unmet medical need for people with this disease," said Dr. Charlene Fell. "IPF is a rare, debilitating, progressive disease that significantly impairs patients' quality of life and drastically reduces life expectancy. Greater disease awareness and broader education is needed to hasten diagnosis and work towards accessible treatment and support options for those living with the disease."
Funding mechanism available for IPF treatment
In their meetings with government officials today, CPFF delegates discussed how the Short Term Exceptional Drug Therapy (STEDT) program can benefit IPF patients in Alberta. The Alberta Ministry of Health established the STEDT program to provide funding for high-cost medication where conventional therapies have failed, or are not tolerated, and the medication is not covered by patient's employer, private or government-sponsored drug benefit plan, and no other funding options are available. Funding through this program is administered on a case-by-case basis.
"It is commendable that the Alberta government has put a program like STEDT in place for those who need it, and we hope that this funding mechanism will ensure patient access to Esbriet as the first and only treatment option approved for IPF in Canada," added Davidson.
A chance to live and love longer
Gloria Bennett has been living with IPF since she was diagnosed in 2007. She was part of a clinical trial for Esbriet (pirfenidone) and has far surpassed the average life expectancy that comes with its diagnosis. "I am so, so lucky to have had the opportunity to try Esbriet. It has changed my life," said Bennett. "My disease is stable and I feel blessed to have the extra time to spend with my family and watch my grandchildren grow. My wish now is that all IPF patients will have the same chance for a longer and a better quality of life."
The estimated prevalence of IPF in Alberta is approximately 377 patients, with approximately 182 new patients diagnosed with the disease each year.
Please visit www.cpff.ca for more information or to find out how you can support the IPF community.
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 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
For further information:
Jerrica Goodwin, Cohn & Wolfe: [email protected]: 403-228-6688 ext. 4324
Sean Beardow, Cohn & Wolfe: [email protected] 403-462-2306