15 · OAKVILLE BEAVER Wednesday, August 26, 2009 Living Oakville Beaver LIVING EDITOR: ANGELA BLACKBURN Phone: 905-337-5560 Fax: 905-337-5571 e-mail: ablackburn@oakvillebeaver.com Lobby pays off thanks to community "A great deal of appreciation and thanks Oakville's Merv Smith recently go to many people received the second best news he in this community." OAKVILLE BEAVER STAFF By Angela Blackburn ever could. As he faces his own mortality battling multiple myeloma, an incurable blood cancer, he has not beat his disease, but he has bested similarly daunting odds of fighting bureaucracy. Smith was spurred into action, not by his illness, but by the disbelief registered when he realized Canada's medicare system, which we all take for granted, would, in fact, not come to his aid in his hour of need. Smith not only had to come to grips with his diagnosis as he moved into his retirement years -- supposed to be the best years after a lifetime of working -- but news that he would, as a result, face the choice of financially breaking his estate on drug costs or facing certain painful death in order to leave a legacy to care for his family. Neither option is what the intelligent, quiet husband and father, who worked all his life, had expected. But while the support of the government was uncertain in his hour of need, Smith's family, friends and community rallied to his aid -- something he believes helped change the system. Smith, who is in his early 60s went through a raft of treatments and when he entered a stable remission, got involved with Myeloma Canada and began lobbying. The drug Revlimid was proving effective, but expensive, in providing quality of life for those with multiple myeloma. It was approved by Health Canada last fall and was publicly funded in British Columbia. It was being reviewed in Ontario, but it was feared no public funding would be forthcoming. Smith's friend and former mayor Ann Mulvale began asking for signatures on a petition for change and brought Smith's plight to the attention of the local media. From there, long-time Oakville resident, town councillor, commu- Merv Smith, Oakville resident nity champion and now Oakville MPP ,Kevin Flynn, also got involved. Flynn met with Smith and Mulvale and went to great lengths to read the petition into the record just before Queen's Park adjourned for the summer. Smith said he can't thank Flynn enough for his efforts. Mulvale believes it's a case of what can be achieved when a community rallies together -- as Oakville so very often does. It was in late June that Smith received a letter from Ontario Health Minister David Caplan noting the drug approval process can be frustratingly lengthy for those who are ill, but that it is necessary, and closing by wishing Smith the best possible health in the future. By the end of July, Myeloma Canada was issuing a thank you to the provincial government as public funding for Revlimid had been confirmed. Smith was vocalizing his own thanks -- to his community of backers. "A great deal of appreciation and thanks go to many people in this community. In particular, the many signatures on the petition that sought provincial assistance, along with the support of MPP Kevin Flynn, who read the petition into the legislature just before the summer recess, and the advice and guidance provided by former mayor Ann Mulvale," said Smith. While Ontario is only the second province or territory in Canada -- B.C. had already approved covering costs of the drug after Health Canada gave it the green light -- to cover the drug costs, Smith is now guiding others across the country in seeking similar outcomes at the JIM BRADFORD / SPECIAL TO THE BEAVER MAKING PROGRESS: Oakville resident Merv Smith, left, said he owes a great big thank you to Oakville MPP Kevin Flynn for going to great lengths to get a petition read into the record at Queen's Park before the summer break and Ann Mulvale for offering guidance as he gathered community support for a lobby to have the drug Revlimid, newly approved by Health Canada, publicly funded in Ontario. Ontario is now only the second Canadian province or territory to do so. provincial or territorial levels. Nova Scotia recently turned down public funding of the drug. "Efforts are driving towards making multiple myeloma a chronic, as opposed to an ultimately fatal, disease," 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. 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 is now facing treatment with the drug Revlimid -- a drug he said his oncologist believes is too promising to ignore. In Ontario, it was before the Joint Oncology Drug Review board, but it was feared public funding would not be recommended as funding for other drugs for other, more prevalent diseases had recently been denied. And so the lobby began. Smith, who hails from western Canada, said he recalls how, as a kid growing up on the Prairies, the home of medicare, his mom, who had nine children, welcomed the advent of medicare. Fifty years hence, Smith and his wife, Trudy, and their two sons had moved to Oakville in 1981 for a job opportunity and never left. After a corporate career, Smith was 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 broke his arm hiking, his condition was quickly discovered, as multiple myeloma manifests itself in the bone marrow. As it attacks plasma cells that function as part of the immune system, it leaves bone lesions in its wake.