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OAKVILLE BEAVER · Wednesday, March 4, 2009 10 Living Oakville Beaver LIVING EDITOR: ANGELA BLACKBURN By Angela Blackburn OAKVILLE BEAVER STAFF Phone: 905-337-5560 e-mail: ablackburn@oakvillebeaver.com Picking up the tab O akville's Merv Smith is facing his own mortality -- and hoping he won't face the choice of giving up on his own life or breaking his family financially. The 62-year-old Smith has a fatal disease and knows the drugs that could, not save his life, but prolong it and add quality to it, could quickly erode his family's life savings. The Oakville man hails from western Canada, but moved here with his wife, Trudy, and their two sons in 1981 for a job opportunity. "We haven't left yet and probably never will," said Smith, who after a corporate career, has been working for the last decade as a self-employed leadership development specialist. In June of 2007, Smith was suffering pain in his right upper arm and felt tired a lot. When he and his brother made a trip to Ireland and Smith couldn't carry his luggage, he knew something was seriously wrong. While his family doctor was doing investigations into Smith's health, the local man went hiking and took a nasty fall. He broke his arm above the elbow and his ankle. "That pushed things into high gear," recalls Smith, noting his orthopedic surgeon had him see a specialist at Mount Sinai within a week. Within another few days, a diagnosis was being made. Smith has multiple myeloma. "It's incurable," he said. It is considered a blood cancer that manifests itself in the bone marrow. It attacks plasma cells that function as part of the immune system and, according to Smith, squeezes out the good cells that support the immune system. It leaves bone lesions in its wake. "I have holes in my skeleton in various places, predominantly the long bones," said Smith, adding with a smile, "A few in my head, too." Maintaining his sense of humour despite a diagnosis that carries eventual death, Smith has, in a period of remission, turned his attention to a lobby for provincial funding of a new drug recently approved by Health "You know, we talk about this fabulous health care system here in Canada, and indeed it does have many great attributes. But the `universal' principle is a fair bit misleading." Merv Smith, Oakville resident Canada. "The primary objective of therapy is to extend survival with some degree of quality of life," said Smith. Multiple myeloma is a rare cancer representing only one per cent of all cancers and two per cent of cancer deaths. Smith speaks of great advances over the last 25 years. Those advances mean that whereas in the past, only half of those with the disease were living two years after diagnosis, now 90 per cent of those diagnosed are living two years after they're given the news. "Efforts are driving towards making multiple myeloma a chronic, as opposed to an ultimately fatal, disease," said Smith. The Oakville man has followed a typical course of treatment. He has used steroids, had a stem cell transplant and even took the drug thalidomide several times. Though outlawed in the 1960s when it was found to cause severe birth defects, the latter can be effective in fighting multiple myeloma. Ultimately, Smith said he had to abandon the drug when he lost hearing and then had to resort to a hearing aid. Smith, as in his experience with taking thalidomide, finds he is now on the turf of being able to access drugs that may not be formally approved for use or funded in Canada, but are available through exceptional circumstances. Smith said his experience with thalidomide opened his eyes to the associated costs. Not only did he have to fund costs associated with the side effects of LIESA KORTMANN / OAKVILLE BEAVER FACING THE COST OF ILLNESS: Oakville resident Merv Smith was a child when Medicare was born. He's facing a shocking reality now that he is a senior. treatment -- hearing loss treatment and aids -- but faced costs that can run up to $5,000 per month. "If you don't have a plan that covers that, you're paying it out of your own pocket," said Smith. While he is now in a fairly stable remission, Smith said he is eyeing the future. Next on his plate for treatment could be a drug known as Revlimid. It was approved by Health Canada last fall, but is not funded universally in Canada. It is not covered in Ontario -- and it could be twice as expensive as thalidomide. Smith said his oncologist is viewing Revlimid as too promising to ignore. It is however, now that it has been approved by Health Canada, destined to make an appearance before the Joint Oncology Drug Review board, but it's thought public funding won't be recommended. Smith knows that when his health deteriorates, his doctor could likely recommend Revlimid. The cost could be $10,000 a month. He said he comes from a large family and its members have already turned their heads to finding ways to cope financially. "Some remarkable gestures have been made," said Smith recalling how, as a kid growing up on the Prairies, his mom, who had nine children, welcomed the advent of Medicare. "Fast forward 50 years and it's ironic," said Smith. While the drug company itself will provide the drug on a compassionate basis, those who even own a home may not qualify, according to Smith. Having been approved by Health Canada, multiple myeloma sufferers want to see the last barrier to access fall by having the cost of Revlimid covered through the Ontario Drug Benefit Formulary. According to the Ontario Ministry of Health and Long-term Care, the Ontario Drug Benefit (ODB) program and Cancer Care Ontario (CCO) have developed a common submission and evaluation process for all cancer-related drugs for consideration under the New Drug Funding Program (NDFP). As well, all provinces (except Québec) have collaborated on an interim, cross-jurisdictional process for a single review of cancer drugs -- the Joint Oncology Drug Review Process. "While waiting for this decision to be made, those already on Revlimid will be faced with drug costs that could reach $10,000 per month. Quick and painful bankruptcy for many. Add to this, the current economic pressure on pensions and financial resources and a veritable nightmare emerges," said Smith. The manufacturer, Celgene, has agreed to cover the cost of Revlimid for patients currently on the drug until March 31 of this year. That was recently extended from an earlier January cut off. "At the same time, it's interesting that, as the approval process grinds slowly along, the Ministry does have an option that would ensure interim coverage for Revlimid. I believe it's called "Exceptional Access Program" (EAP)," said Smith. Now Smith is advocating for coverage of the drug. He is taking his own story public to create awareness of both the disease and the need for drug funding. He hopes to meet with Oakville MPP Kevin Flynn to plead his case. He has also been collecting signatures on a petition to press for coverage. "You know, we talk about this fab See Health page 11