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Resident fights for treatment access for her mother by John Bkila Oakville Beaver Staff 11 | Thursday, July 11, 2013 | OAKVILLE BEAVER | www.insideHALTON.com Oakville's Linda Malone is fighting for her mother's access to treatment for a rare lung disease. It could keep 80-year-old Gladys Lawson alive longer and improve her quality of life. Lawson has idiopathic pulmonary fibrosis (IPF), a rare, progressive and ultimately fatal lung disease that has no known cause or cure -- it is suspected that Lawson's mother died from the same condition, said Malone. IPF is characterized by the scar tissue that forms on the lungs, which effectively interferes with a person's ability to breathe. The approximately 3,000-5,000 Canadians suffering from mild to moderate IPF have had no proven treatment options available to them -- until recently. In October 2012, the drug Esbriet (pirfenidone) was approved by Health Canada as a viable treatment option for those with IPF . But according to the Canadian Pulmonary Fibrosis Foundation (CPFF), "despite the severity of the disease, the absence of other treatment options and a priority review granted by Health Canada based on significant unmet needs, the Canadian Drug Expert Committee (CDEC) through the Common Drug Review (CDR) has recommended that public drug programs keep Esbriet out of reach for most IPF patients who are in dire need of the new treatment." CPFF president and founder Robert Davidson says he doesn't understand why the CDEC is putting forward their recommendation. "We're not sure why the Canadian Drug Expert Committee made the recommendation not to fund Esbriet (pirfenidone) in Canada, and to be quite honest, it doesn't make much sense to us considering the governments of other countries, such as Belgium, Denmark, Finland, France, Germany, Iceland, Italy, Norway and Sweden have made the decision to fund it and are making it accessible to patients," said Davidson, who was also diagnosed with IPF , but received a double-lung transplant in 2010. Oakville's Linda Malone, right, with her mom, Gladys Lawson, who has been diagnosed with a rare, progressive and ultimately fatal lung disease. | submitted photo "If the funding bodies in all these countries, including Canada, have been provided with the same data on which to base their decisions, then it's clearly a matter of interpretation. For the IPF patient community in Canada, it's unthinkable that access to the first and only treatment for this devastating disease is being kept out of reach for those who need it right now. For many, this is their only hope -- they have nothing else." Most seniors, like Lawson, depend on the Ontario Drug Benefits program as they no longer have private insurance to cover the costs of their drugs and medications. Lawson has been taking Esbriet for a little more than a month and she and her husband have been paying for it out of their own pockets -- the drug costs approximately $3,800 per month. "You can imagine what that's doing to a cou- ple of 80-year-olds who are on fixed incomes," Malone said. "Their joint income isn't even close to cover the cost of the drug. "The thing with Esbriet, it doesn't make you better. All it does is slow down the process. It gives her more time at her quality of life. Once she crosses over a certain point, she will be permanently on oxygen and she'll go down really quickly." Malone said she and her family were extremely disappointed and frustrated to learn the CDEC was recommending Esbriet not be publicly-funded. "It's extremely difficult just to find someone that understands the drug and can help you understand it. It's all further complicated by the fact that it's so expensive that anybody who needs it -- most people can't afford it. My parents can't, but they feel they have no other choice," she said. That's why Malone says she and her siblings have taken to writing their MPPs to try and get help at the provincial level and raise awareness of IPF and Esbriet. "The goal, of course, is to get it publiclyfunded across all the provinces and territories in Canada eventually, so that anybody who has this disease gets the help," Malone said. "It's just so tragic what's happening right now." Davidson agrees. "While these delays continue, patients are getting progressively worse so that Esbriet may no longer be appropriate for them," he said. "They are losing their chance at an improved quality of life and length of life. Many will die sooner, needlessly. It is cruel to these people to withhold access to this proven drug and take away their hope." If you have spent your working life in noisy areas, you may be eligible for full coverage. Even if you are now retired, you may apply for benefits if your hearing was damaged due to long term noise exposure in the workplace. We are authorized vendors for WSIB, DVA, ADP, ODSP and NIHB. We are experienced in the application process with a very high success rate. The first step to better hearing is a hearing test. SHOPPING DEALS UNFORGETTABLE JULY 19TH 6:00PM MIDNIGHT If you've forgotten what fair, professional service feels like, call us and prepare to be amazed! SATISFACTION GUARANTEED! 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