An activist group is using Canada's assisted dying law as the basis for a new proposal, which would grant terminally ill patients the freedom to pursue experimental and untested treatments in a last-ditch effort to stave off their deadly diseases.
The group Right to Try wants permission for individuals with terminal illnesses to try drugs that are still in the development phase, before they are approved by Health Canada. The group argues that because most of these individuals would be legally entitled to a doctor-assisted death, they should also be permitted to take the risk of an experimental drug.
So far, nearly 100 patients with terminal conditions from across Canada, or their family members, have joined the group.
The proposed law would apply to individuals with ALS, Parkinson's disease, certain forms of cancer and other terminal illnesses. Patients would work directly with their doctor to choose the therapy, and they would be required to pay for it themselves. The proposal would protect doctors from lawsuits or legal prosecution stemming from the experimental treatment, except in cases of gross negligence or wilful misconduct.
The law would be similar to those in the U.S., where 32 states have passed their own right-to-try laws.
The Canadian Right to Try group has been lobbying politicians in Ottawa, and will hold discussions later this week with federal officials.
At the moment, only three per cent of patients get the opportunity to try experimental treatments.
When it comes to ALS, there are very few promising treatments in the pipeline. The studies that are ongoing accept few patients, and they need to be well enough to qualify.
Gino Sisera, a 34-year-old father of two young boys, suffers from advanced ALS . He is in a wheelchair and speaks via a computer. He is rapidly losing strength and function.
Sisera says there is an urgent need for the legislation. "I think if anyone put themselves or a loved one in a terminal situation, then they would want as many options as possible," he told CTV News. "How can that be denied to someone who has no other option?"
Thirty-five-year-old Jeffrey Perreault, who also has ALS, says he would do anything to halt the progress of his disease. "I know that if that law was in place, I could get that lifesaving treatment today and I would be around for my wife," he told CTV News.
Dr. Lorne Zinman, who runs Canada's largest ALS clinic at Sunnybrook Hospital in Toronto, says the law is a good idea, so long as there are some safeguards. He says he would prefer the law to be limited to drugs and therapies that have passed the first phase of human safety trials. "When you get an experimental therapeutics we want to make sure that we're not causing harm," he said.
He also stressed the importance of protecting the existing discovery process, in order to maintain the integrity of the process at pharmaceutical companies. "We don't want them to say, 'why bother doing a phase three study against placebo – let's just get out drug out there,'" he said.
Canada's Special Access Programme offers some chance at obtaining non-marketed drugs for treatment, but patients like Perreault say there are too many legal hoops to jump through in order to access those drugs. He also laments that the SAP does not provide access to experimental stem cell therapies, which are considered a promising direction.
Perreault says he wants to bring his disease to a plateau, so he doesn't lose any more of his bodily functions. "I would love to have the opportunity to walk freely… not waking up thinking… when is the next day I lose something else?"
With a report from CTV’s medical specialist Avis Favaro and producer Elizabeth St. Philip
