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Huron Expositor, 2005-11-23, Page 20News The Huron Expositor • November 23, 2005 Page 20 Myeloma patients fight for access to new drug Cheryl Heath iliCUMEMEM Multiple myeloma statisti- cally strikes four in 100,000 people. But, there are currently at least 10 people grappling with the fatal form of can- cer, which attacks the blood's plasma cells, in a county with a population of 60,000. A number of those facing the disease can benefit from Velcade but theroblem is the drug costs $40,000 a year and the province has yet to give the green light for its usage. Velcade is, however, avail- able for use at a private clinic in Toronto. It is precisely this Catch- 22 that has inspired a group of multiple myeloma suffer- ers in Huron County to lead the charge against the bar- rier. The group, led by Bruce Coleman of Exeter, approached Huron -Bruce MPP Carol Mitchell with the petition signed by 2,779 county residents recently at her Clinton constituency office. Coleman, who once oper- ated a Seaforth-area farm, first learned of the disease four years ago when he went to see a doctor about back muscle spasms. Blood tests revealed the diagnosis and since then, he has been on stem cell trans- plant treatments. A second form of treat- ment that sometimes proves helpful is thalidomide, a drug that became infamous in the 1960s after a number of pregnant women gave birth to physically and men- tally challenged children. Now, there is a new drug on the market, Velcade, which is proving effective in the battle with myeloma. And though the drug is proved by both the Food and Drug Administration in the United States and Health Canada, the provincial gov- ernment is delaying its approval pending further studies. This means that in Ontario the drug is avail- able only to those who uti- lize a private cancer clinic in Toronto or if the patient is under the care at one of the few hospitals willing to risk taking the cost out of their own budget in the hopes of one day being reimbursed. Among the group at Mitchell's office was Jim Barnes, a former Central Huron Secondary School teacher who is now retired and lives on a Belgrave-area farm. Barnes was first diag- nosed with the disease six years ago after once again being turned away from a blood donor clinic. He was advised to see a general practitioner and fur- ther tests revealed multiple myeloma. It was then Barnes learned of the unwelcome prognosis of . one year to live. • Barnes retired from teach- ing and began stem cell transplant. He is now anx- ious to begin using Velcade. "For over six months, we myeloma patients have been trying to persuade the gov- ernment to provide access to this drug and while we have been writing letters and meeting with our MPPs, we've been watching our fel- low patients relapse and sometimes die while waiting for access to this drug," he says. "This is particularly rele- vant to this area because though this drug has a theo- retical incidence of four per 100,000, it seems to be par- ticularly common in Huron County. I have no way of gathering information in any comprehensive or offi- cial way, but I can name 10 people in our area who cur- rently have this cancer." And, he says, "I don't see how our public health-care system can allow those who can afford it to receive this potentially lifesaving treat- ment while denying it to others." Barnes, who is currently in remission, says some of the complications from myeloma include bones that suddenly break. Indeed, Barnes has suf- fered with the pain of verte- brae that have spontaneous- ly fractured. The cancer is believed to be caused by exposure to chemicals, like gasoline and chemicals used on farms. Huron -Bruce's MPP is pledging to present the peti- tion at Queen's Park at the next possible opportunity. She also promises to send a copy of the Hansard to the group. The group's No. 1 goal, says Coleman, is to raise awareness of the "two class- es of cancer patients," name- ly one for the public and a more accessible one for those who can afford to use a private clinic. SCHOONDERWOERD BROS. CONCRETE LTD. 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