‘I feel like I’ve been cheated’
Damian Inwood
Province
Jenna Machala is planning a class action over the fact she and other MS patients can’t get access to new treatment in Canada. Photograph by: Mark van Manen, PNG, The Province
Vancouver realtor Jenna Machala is taking a group of fellow multiple sclerosis patients to Poland to get treatment that’s banned in B.C.
And the 54-year-old MS rights activist says she plans to file a class-action complaint with the B.C. Human Rights Commission on behalf of more than 60 people, claiming people with MS are suffering discrimination.
“I came to this country from Poland because Canada had things to offer that no country had,” said Machala on Monday. “Now I feel like I’ve been cheated. I’m an MS patient and I have to go back to Poland to look for help there.”
The controversial treatment involves opening up blocked veins with a procedure similar to angioplasty, where a balloon is inserted.
An Italian doctor recently claimed that narrowed jugular veins — known as chronic cerebrospinal venous insufficiency or CCSVI — can contribute to or cause MS. The treatment has been branded “experimental” in Canada and there have been calls for research and clinical trials to be conducted.
“They are saying we need two-, five-or 10-year studies,” said Machala. “We have no time. In five or 10 years I’m going to be in a wheelchair and those who are already in a wheelchair are going to be dead.”
Machala said she suffered symptoms for 12 or 13 years but was misdiagnosed as having fibromyalgia. “Last September I had a fall and suffered dizzy spells, nausea, vertigo and balance problems,” she added. “I learned in November I had MS, with 12 lesions on my brain and four lesions along my spine.”
She said a test showed she had blockages in her veins but a vascular doctor refused to see her.
Now, she is spending about $8,900 and leaving for Poland on June 17 to get the treatment along with two other B.C. MS patients, plus one from Alberta and another from New Brunswick.
Suzanne Jay, spokeswoman for the B.C. division of the MS Society of Canada, said a funding announcement is due June 14 on CCSVI research projects. She said the society has also called on the federal health ministry to allocate $10 million to the Canadian Institute of Health Research, to investigate CCSVI.
B.C. NDP health critic Adrian Dix said the issue needs a national approach and said Health Minister Kevin Falcon should take a leadership role with other provinces and the federal government.
Falcon said last week that while he sympathizes with MS sufferers, there are risks with experimental procedures.
“It’s always been the position, not just of the province, but of the College of Physicians and Surgeons, that it is not at all appropriate to move forward with a procedure before it’s gone through appropriate reviews,” said Falcon.
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