Terminally-ill patients demand better access to experimental treatments

A group of terminally-ill Canadians is urging the federal Ministry of Health to give them speedy access to experimental treatments and drugs, and they’re making their case on Parliament Hill Tuesday.

Gino Sisera, 34, was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in 2013. The father of two says there are no remaining treatments that have been approved by Health Canada.

“Terminal patients like myself have no options, we don’t have time to wait years for treatments to be approved,” Sisera said through a computerized speech program.

Sisera says the recently passed Bill C-14 — which gives terminally-ill patients access to doctor-assisted dying — demonstrates a double standard.

“Why can we end our lives but we can’t fight to live?” Sisera asked from his Mississauga home. “We just want the chance to fight.”

Gates Perrault likens end-of-life options to one side of a coin.

“We’re giving them the ability to die, the opposite side of that coin would be the ability to live,” he said. Perrault will be making that case with his terminally-ill son Jeffrey as part of the ALS caucus speaking in Ottawa Tuesday.

“We’re giving them the ability to die, the opposite side of that coin would be the ability to live.”

Patients already seeking experimental treatment

The advocates asking Ottawa to loosen its rules argue that terminally-ill Canadian patients are finding their way to these treatments anyway.

“The tourism industry for medication is out there already,” Perrault told CBC News Toronto. “So the question is, why do we need to go out there when we can have something safe here in Canada?”

For Sisera, the prospect of travelling for experimental treatment is especially cruel, considering the research taking place in his hometown.

“It’s so frustrating that we have this very promising world-class treatment right in our own backyard but we can’t access it,” he said.

In an open letter to the federal government, advocates say the process of a drug or treatment going from clinical trial to approval often takes 10 years or more.

Health Canada does make experimental drugs and treatments available through its Special Access Programme (SAP), but the department only makes them available on a case-by-case basis.

‘A greater good’

CBC medical columnist Dr. Peter Lin says the larger medical community could also benefit from a new program allowing experimental treatments.

“It’s a very scientific way of approaching things,” he told CBC Toronto.

Regardless of the immediate efficacy of a drug or treatment, Lin believes the information gained could be invaluable for future patients. For example, he says doctors could learn about the side-effects or allergic reactions of experimental drugs.

“There’s a greater good if we allow this to occur, ” Lin said. “So that is something I think governments and people in general can get behind.”

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