One year later, patients with deadly lung disease still fighting for access to only available treatment
TORONTO, Sept. 25, 2013 /CNW/ - Building a global voice for idiopathic pulmonary fibrosis (IPF), September 21-29 marks the first IPF World Week. This year's "Breath of Hope" campaign involves IPF patient organizations from eight countries, including Canada, and offers global support and hope to IPF patients and families. The Canadian Pulmonary Fibrosis Foundation (CPFF) is committed to increasing awareness and dialogue regarding this rare, progressive and fatal disease, with a focus on access to the first and only available treatment for Canadians suffering from IPF.
"Last year, findings from a pan-Canadian survey investigating patients' experiences with IPF revealed they were dissatisfied with the poor standard of care and lack of effective treatment options available to them," said Robert Davidson, president and founder of the Canadian Pulmonary Fibrosis Foundation (CPFF). "Fast-forward one year later and although there is finally an effective medicine available for IPF, we are still in the same, desperate place with no public funding and therefore restricted access to this treatment for patients who can benefit from it."
Hope at last
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 (pirfenidone) 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, its grim prognosis, 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. This is especially unfortunate for a patient population of mostly seniors, who rely solely on public funding for access to drugs.
"Our patient community feels confused and isolated — left to wonder why our lives aren't worth the same as those with some forms of cancer or other rare diseases. Governments of other countries, such as Belgium, Denmark, Finland, France, Germany, Iceland, Italy, Norway, Sweden and the UK have made the decision to fund Esbriet and are making it accessible to patients," added Davidson. "For the IPF patient community in Canada, it's unacceptable that access to the first and only treatment for this devastating and rare disease is being kept out of reach for those who need it right now. For many, this is their only hope - for some, it may already be too late."
During IPF World Week, patients and caregivers across Canada continue to raise awareness about the disease and advocate for access to treatment through special events, social media, and meetings with local government representatives and key decision-makers. Joining the national and international network of people working to support patients with IPF is Dr. Shane Shapera, a respirologist who leads the IPF clinic at Toronto General Hospital.
"It is important to understand that patients with IPF are facing an ultimately fatal disease, with only one pharmacologic treatment option available in Canada that's been shown to slow disease progression," said Dr. Shapera, an international IPF expert. "Many patients who may benefit from Esbriet need access to it immediately, while the disease is still in the mild to moderate stage. Time is of the essence, especially with this disease, so we are asking our provincial governments to provide funding for this drug now."
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 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
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