Andy Meinen of Abbotsford wants to get people thinking about this question: If Canadian law can be changed to allow a suffering person to have an assisted suicide, why can’t the law change to allow a person to take a drug that might save his or her life – even if that drug has not yet been approved for public use?
His wife Hanna has been battling Huntington’s disease, which is steadily diminishing her brain function. There is currently no cure.
Hanna, 39, is losing motor function, and becomes confused about where she is.
“Living with Huntington’s is hell. You’re consumed by it,” Andy says.
There has been a breakthrough. Researchers at the University of Alberta have developed a therapy that not only stops the disease, but reverses many of the effects – in mice.
The problem is that the drug must first undergo clinical trials, and then be approved for human consumption – a process that typically takes seven to 10 years.
Andy wants that fast-tracked.
“We don’t have that time. The alternative is certain death, so why not?”
Hanna knows what’s at stake.
“She understands,” he said. “It has given her hope, whereas before she was suicidal.
“If people are allowed to die, why can’t we risk living?”
The couple has launched an awareness campaign, Hanna’s Ride for Life, touring in an RV with a goal of collecting a million signatures on a petition asking the federal government to grant people the right to have experimental treatment when they have no other medical option.
Hanna was diagnosed in 2005 while the family was living in Mitchell, Ont. In August, they moved to Abbotsford, where Hanna’s family can help her.
“She often needs people around her – she needs a lot of support,” Andy said.
Dr. Simonetta Sipione of the University of Alberta said it is critical her treatment be proven non-toxic to humans during clinical trials.
She is optimistic, because a version of the drug is already in use and she is working to get to clinic trials. It will be a year or two before they are approved, and the trials themselves will take six months to a year. If there are any negative effects from the treatment, the trials are suspended.
“There is a lot of work to be done to prove the drug would be safe,” she said.
She has personal experiences similar to Hanna’s. Her father has a serious form of Parkinson’s disease.
“I would not want him (her father) to have something that would hurt him worse than the disease.”
The treatment would require a tiny pump to be surgically implanted in the brain, and would most likely have to be repeated to remain effective, and it will be expensive.
“There is a good possibility that in spite of the results in animals, it will not work in humans. We have to consider that.”
Andy Meinen will host an information forum about his petition on Friday, Oct. 19, at 7:30 p.m. at the Abbotsford Free Reformed Church, 3300 Mt. Lehman Rd.
The attached video is from an interview with CJCS Radio in Stratford, Ontario.