The right to 'live a bit longer': Montreal student losing access to ALS meds calls for change

A 22-year-old McGill student who suffers from a terminal disease could soon lose access to the medication she needs because she's graduating from university.

Amanda Tam said a year and a half ago – five days before her 21st birthday – she felt something strange going on with her body.

"A lot of twitching, grip strength was very strange, very weak. Doing exercise was very hard," she said,

She was diagnosed with amyotrophic lateral sclerosis, or ALS, four months later.

The progressive neurological disease has a median survival rate of just three years.

The perennially positive young woman has shared her story on TikTok, with some posts that have been viewed tens of thousands of times. They're her way of raising awareness about ALS.
 

@amandatam00 welcome to my chaotic life #terminallyill #terminalillness #terminaltok #alsawareness #als #lougehrig ♬ Lofi Vibes - Gentle State

One reason she's remained so upbeat is a new drug called Albrioza, which has been slowing the progression of Tam's ALS.

"Albrioza was just approved a few months ago by Health Canada, and luckily for me, I was able to access it earlier than others because I have private insurance," she said.

Albrioza has been a game changer, said Tam's doctor, Angela Genge, director of the ALS program at the Montreal Neurology Clinic.

"In a disease like ALS, which is relentlessly progressive, when you have a drug that halts or slows down that progression, it means that people like Amanda can stay independent and start planning their futures," she said.

Tam can be covered by her parents' health insurance as long as she is a student.

But in two months, she's graduating, meaning Tam will lose her coverage. Her prescription for Albrioza will cost her $94,000 per year, which Quebec's public health and drug insurance plan does not cover.

"People who are desperate for this medication just to live a bit longer, they should have the right to have access to it," said Genge.

Tam doesn't have the time to wait for governments, and just wants to live her life like other young people.

"Obviously, I want to have that experience that every young 20-year-old has, struggling to pay rent, living day to day, trying to learn how to cook, do laundry," she said.

Tam's doctor has spent time calling the health ministry, but she remains baffled that nothing has changed.

"They allow every cancer patient to have access to whatever drug is approved and available," she said. "It's time to do the same for ALS."