MS patient gets her wish
With her hair freshly washed, Barb Farrell posed for photos in her bed at Royal Victoria Hospital, Friday.
The Barrie mom is going to the United States and she needs a passport.
"I'm really happy," she whispered with effort.
"We've had an offer to get the treatment in the United States by a private, anonymous source," said her husband, Patrick, who spent the day furiously trying to make arrangements.
"It looks like we're going on Wednesday, getting the procedure done and coming back the same day,"?he added.
Earlier this week, Dr. Russell Price had to tell the Farrells that a relatively simple procedure would continue to elude them.
As a patient suffering from the debilitating effects of multiple sclerosis (MS), the angioplasty that is her last hope continues to only be offered to heart patients.
Those with MS, identified to have a stenosis or narrowing in the veins, can't get it in Barrie, Ontario, or anywhere in Canada.
Close to 2,000 MS patients worldwide identified with chronic cerebro-spinal venous insufficiency (CCSVI), have undergone the procedure, many of them Canadians from Barrie, Orillia, Hillsdale and right across the country. Their situations and the results are compelling.
But the medical establishment says the anecdotal evidence isn't enough. For this to be considered acceptable treatment, it must undergo the rigours of research and testing.
Every day this week has presented the Farrells with a new event. The crushing news from the hospital Wednesday was followed Friday with the revelation of a community rallying around them.
With financial help, Patrick has been able to make arrangements to fly Barb to the United States in a specially equipped aircraft accompanied by a paramedic. She will undergo the procedure and then fly back to RVH where she will return to her hospital bed.
Barb hardly moves a muscle now, but the smile seemed to come easier Friday. She was remarkably brighter, cheerier.
What kind of effect this procedure will have on her in this advanced state is unknown. Maybe it can prolong life. But the couple also know the risks.
"There are some risks and we're going to accept that," Patrick said. "The thing is to give her the dignity to fight for her life."
The Farrells' plea to RVH on compassionate grounds earlier this week resulted in some tough meetings among hospital staff. The hospital's ethics committee and medical advisory committee both laboured over the question.
The decision was to, ultimately, maintain the status quo.
"Our position is the same as all other Ontario hospitals ... and not provide the procedure to MS patients at this time," said Price, a pathologist who is RVH's acting chief of staff.
Unlike most other Ontario hospitals, RVH is no stranger in the use of this procedure on MS patients.
Vascular surgeon Dr. Sandy McDonald was piqued when he read Dr. Paolo Zamboni's use of the simple procedure on MS patients identified with a vein blockage he dubbed CCSVI. So, McDonald starting testing MS patients at his Barrie Vascular Imaging clinic.
More than 300 MS patients have since been tested at McDonald's Barrie facility, about 90% of whom were identified with the vein blockage that prevents the brain from draining.
Price said McDonald approached hospital officials with interest and excitement at the beginning of the year, resulting in the treatment being offered through a radiologist to a limited number of patients.
In January and February, McDonald had six patients treated with the procedure at RVH.
It's unclear how many Canadian MS patients have had angioplasty here on home turf, but the RVH group appears to be the largest in Canada.
Price said it was a collective decision to stop after six were treated.
Barb Farrell was next on the list. Her procedure was cancelled two days before it was to happen. She quickly went into further decline and was hospitalized.
McDonald met with Zamboni, who told the world last year that most MS patients he had tested had a vein blockage. And he told the world 65 patients underwent angioplasty to fix it, with largely good results.
McDonald and technologist Angela Lagace went to Italy to work with Zamboni for four days in March.
Legace became the only Canadian sonographer to perform the Doppler test on MS patients.
They returned for a week earlier this month, with two more Barrie technologists, another two from Hamilton and other Canadian and American specialists. This time, Lagace helped in the training.
Back home in Canada, access to the treatment remains elusive, despite lobbying from many fronts, including the politicians such as Barrie MPP Aileen Carroll and MP Patrick Brown.
Carroll says she doesn't care if OHIP covers the cost of roughly $1,500 or not. The immediate issue is accessibility, not money. If people can get plastic surgery through two private Barrie clinics, why block MS patients from getting the relatively simple angioplasty treatment regularly used on heart patients?
"Currently, the procedure is not allowed in Ontario," she said. "I am of the view that it should be.
"They should be permitted to have that procedure to effect that change in their lives."
And while the jury is still out because stringent testing hasn't occurred, she said the anecdotal evidence from those who have had the procedure is compelling. While the research goes on to more closely examine the finding of CCSVI, the procedure should be available to those who want it.
And, she says, they should have access right away.
Carroll said she has addressed the issue at Queen's Park and lobbied Health Minister Deb Matthews.
While the procedure isn't being offered in the province, Carroll said "it isn't open and shut" for individual hospitals.
A spokesperson for the provincial health ministry said there are programs for access to certain drugs on compassionate grounds, but not surgical procedures.
Andrew Morrison said the ball is in the federal government's court now.
"Health Canada licensing ... is required before we can take a better look at this," he said.
Brown has been involved in exploring the activity around CCSVI and lobbying to make the procedure accessible.
The province, he says, has the power it needs.
"The Ministry of Health of Ontario has full ability to allow this treatment," he said. "It would be as simple as Premier McGuinty to ask the OTHAC (Ontario Health Technology Advisory Committee) to support the MS treatment for CCSVI in light of the 1,600 cases globally and not the smaller sample size in Ontario. He could order this to be available by OHIP. "
Patrick Farrell is happy that the issue is being addressed, but Barb can't wait for the discussions to settle into action.
With support from the community, he is starting to pack and getting the passports ready.
Risks or no risks, he says, he's grasping onto their one last chance.