The recent death of a Regina woman battling Multiple Sclerosis has advocates for MS treatment calling for changes in how doctors provide care.

Roxane Garland, 37, died July 22.

She was determined to fight the disease and had undergone a new procedure, known as CCSVI, or Liberation Therapy, and found some relief from her symptoms.

However, Garland was treated outside of Saskatchewan and had difficulty, when she returned home, accessing follow up care.

 

'They were being turned away.' —MS patient advocate Michelle Walsh
mi-garland-roxane

Vince and Roxane Garland in a family photo.

According to Michelle Walsh, a friend to Garland and an advocate for improved MS treatment, the woman was unable to get an appointment for a specialized scan — available in Saskatchewan — to evaluate her need for further treatment.

"Anyone could pay to have this test done," Walsh explained to CBC News. "But not if you have MS and you have CCSVI. So they were being turned away."

Walsh said Garland's MS was progressing and was becoming more and more difficult to manage.

Complications, including a bladder infection, also arose and took a toll.

Garland was finally admitted to hospital where she died.

Her husband Vince Garland told CBC News he believes Saskatchewan doctors are reluctant to provide follow up care for the CCSVI procedure because it is relatively unknown.

"They don't want to get involved because a doctor somewhere else has done the surgery," Garland said. "And they don't want to learn anything about it. They don't want to know anything about it. This is something new."

Walsh says Saskatchewan's health system should support MS patients who need follow up care after CCSVI treatment.

She said it should not matter where they went for treatment or who paid for it.

"If you went on a holiday and broke your leg, you wouldn't be refused by a doctor," Walsh said. "So why are MS patients being treated like second class citizens here?"

Saskatchewan recently announced that some MS patients may take part in clinical trials, in New York state, of the CCSVI treatment.

Those people will be provided full access to follow up care at home.

However, the government is only supporting those involved in the trials.

People like Roxane — who paid for treatment out of her own pocket — are not covered.

A provincial health official told CBC News that patients who are unhappy with their medical care can take concerns to the regulator who oversees physicians.

"I'm not familiar with this particular case so I wouldn't want to comment on that," Shaylene Salazar, from the health ministry, told CBC News. "But again if patients have those concerns, the regulatory body would be the proper place to place those concerns and they would investigate anything that is inappropriate."

CBC News contacted the Saskatchewan College of Physicians and Surgeons and learned that because CCSVI is considered an experimental treatment, it is left to individual doctors to determine what follow up care they will provide, if any.

According to Garland's obituary notice, it was important to her that other MS patients do not face the same obstacles in obtaining treatment and follow up care.

"Rocky [Roxane] would want people to keep on trying to get CCSVI treatment available in Canada and more importantly, the follow up care that she so desperately needed but could not attain," the notice said.