A father fights to give MS patients a chance

Daughter confined to wheelchair
Section: 
News

By Eric Howald

Harvey McLeod of Kincardine has one goal in life – to help his daughter.

 

Connie Prosser, 50, is wheelchair bound in a nursing home in Athabasca, Alberta. She’s been there for three years.

 

Two years ago, the 77-year-old McLeod started a quest to get an operation for his daughter that could improve her life.

 

 

Harvey McLeod

 

The operation takes one hour to perform but, for some reason, does not have regulatory approval in Canada.

 

Back in 1982, a Polish doctor discovered that many multiple sclerosis (MS) patients have clogged neck veins, says McLeod.

 

Then a couple of years ago, an Italian doctor, Paolo Zamboni, tried angioplasty on his wife and her condition improved.

 

Angioplasty, used regularly on heart patients, does not have regulatory approval in Canada for MS patients.

 

That has to change, says McLeod.

 

Connie, a mother of two girls, was first diagnosed with MS 15 years ago. In June, McLeod was driving home from Athabasca and stopped at another daughter’s place in Barrie.

 

Until then, his two-year quest seemed to be going nowhere. But an article in the June 17 Barrie Examiner changed that. The story outlined how Barrie’s federal and provincial politicians are urging the government to allow MS suffers the chance to receive “liberation treatment” – angioplasty procedure used on MS patients identified with chronic cerebrospinal venous insufficiency (CCSVI).

 

The name comes from Zamboni’s research. He found that 100 per cent of the MS patients he tested had abnormal veins. There were certain points where the veins coming from the brain along the neck and upper chest were restricting or blocking the flow of blood.

 

The story in the Barrie paper outlined how treatment in the U.S. last month has changed the life of Diana Gordon, a Barrie woman.

 

She dragged a leg while walking, now she can run up stairs, says McLeod. Another man who was confined to bed can now walk with a cane.

 

Six people had the procedure done in Barrie by vascular surgeon Dr. Sandy McDonald but the government has put a halt to future operations.

 

McLeod, who has talked to the Barrie MP and MPP and Gordon, wonders why the angioplasty cannot be performed on MS patients. “What’s the difference between a plugged neck artery and one going to the heart?” he asks.

 

While the procedure can’t be obtained in Canada, MS patients can be tested for it in this country. The operation is being performed in many parts of the world and people are flying to India and Europe to have either a tiny balloon or stent inserted in blocked veins.

 

According to the National Multiple Sclerosis society website, the U.S. and Canadian societies announced a commitment of $24 million on June 10 to support seven initial CCSVI grants to determine the role of CCVSI in the MS disease process.

 

McLeod has found the Vascular Group in Albany, New York, that will perform the operation on his daughter. There is a six-month waiting period and then patients must return in three months and six months.

The cost is $2,000 for the test and $5,000 for the operation.

 

The operation, says McLeod, would save families and the government a lot of money. It costs his daughter $2,200 a month to stay in the nursing home. If the operation improved Connie’s life to the point where she could leave the nursing home, the cost of the operation would soon be covered.

 

There is also the cost of drugs. One year Connie used $67,000 worth of drugs to treat her MS. There are 280,000 Canadians with MS, says McLeod.

 

MS is a chronic progressive disease of the nervous system, resulting in tremor, paralysis, speech and sight defects.

 

McLeod, who farmed in the Glammis area until a year ago when he retired to Kincardine to allow him to spend more time with Connie, says whether she gets the operation or not, he’ll continue to fight to get the procedure allowed in Canada. He doesn’t care if the provincial government covers the cost of the procedure; he believes people should be able to have the operation in Canada. Many with MS, because of the progression of the disease, are unable to travel overseas for an operation.

 

Everybody should be e-mailing their MPs and MPPs and health ministers to get the law changed to allow the procedure, says McLeod.