Maritime ALS patients see improvements with drug not approved in Canada
For about an hour, five days a week, a couple of weeks at a time, a drug drips from a homemade hanger on the window of Andrea LaSaga’s home in Upper Musquodoboit, N.S.
“So with the drug Edaravone, while she’s taking it she does get more energy,” said Andrea’s husband, James. “It has helped with some of her symptoms, so now she has the ability to burp, which she had lost the ability previously.”
They are things we take for granted on a daily basis, but for LaSaga, they’re tiny improvements when combating one of the world’s most devastating diseases.
“Either you can stick your head in the sand and pretend things are OK, or you can try to find a way forward in life. So you can either live or you can die. What do you do? You live!” he said.
LaSaga chose life when she was formally diagnosed with ALS on Valentine’s Day of this year. The couple, who have been together for 33 years, took to researching everything they could about the disease, trying to find an option that would give Andrea more time.
That’s when they found Edaravone.
“It’s not prescribed in Canada, you got to go to Japan to get it,” LaSaga said.
Not a cure, but some hope
According to the ALS Society of New Brunswick and Nova Scotia, Edaravone is only the second drug developed in over 20 years that has shown promise in treating ALS. It’s not a cure, but for a disease with a life expectancy of two to five years, it’s a bit of hope.
But it’s not approved by Health Canada.
The ALS Society says there are about a dozen people in Nova Scotia and New Brunswick using the drug. It’s on track to being approved in October, but it’s not yet known if it will be covered.
And for those already diagnosed, it’s something they don’t feel they can wait for.
“Back in February, I was walking. Now I can’t take a step. So it is quite quick,” said William Duff.
Duff was on a Navy ship when he started showing symptoms. After seeing a military doctor, Duff was told his time on the sea was over.
“They gave me a chit with a bunch of limitations on it saying I can’t go back on the ship and that I’m being landed and basically I can’t work anymore,” he said. “So, I was a little bit confused.”
The Middle Sackville, N.S., resident has 13 years with the Navy, and at 31 years old, the father of two has become a bit of an expert on a disease he knew nothing about just two years ago.
“For me to purchase it from Japan, which I purchased myself, for a 15-month supply or something like that, I paid I think $8,000 out of my pocket for it,” he said. “Not quite out of my pocket – I did a fundraiser and a lot of people helped out.”
He says when he was walking, the drug helped with the stiffness in his legs and arms. But now, he’s not noticing too much of a difference and says that’s likely because it took so long to get a diagnosis.
The earlier the drug is taken, the better.
“It is frustrating. You’re trying to get something to make yourself feel better. Even if it doesn’t help you – even just the fact that you’re trying something mentally helps you as well.”
For Paul Smith, so-called “Charlie Horses” in his both legs were what tipped him off that something was wrong.
“We all have expiry dates, but with ALS you know that it’s a pre-determined thing,” said the Dartmouth resident.
Smith said it’s tough to describe what getting an ALS diagnosis is like. Roughly 3,000 Canadians live with the disease.
Some of them are in touch, calling themselves “PALS” – or People with ALS.
The ones using Edaravone go through similar experiences. It can take months, sometimes years, to get an ALS diagnosis and they need the formal diagnosis to get approved for the drug in Japan.
Then there’s the money; it costs thousands of dollars to buy it and have it shipped into Canada, before it’s finally administered.
But in the end, Smith believes it has helped.
“Prior to taking the Edaravone, I had to usually nap once, sometimes twice, in a day from tiredness and fatigue,” he said. “One of the first things I’ve noticed after taking Edaravone, I have more energy, I feel more vitality.”
“$20 million is really a drop in the bucket for research”
Edaravone has given those living with ALS a bit of hope – but they’re hoping for more.
Kimberly Carter, the president of the ALS Society of New Brunswick and Nova Scotia, says there’s never enough funding coming “through the pipe for research.”
Canada received $20 million to accelerate ALS research from the Ice Bucket Challenge. But she says it’s running out.
“What we’re afraid of is that we will be making some discoveries and right when we need more money to enhance those discoveries, that $20 million will run out,” Carter said. “$20 million is really a drop in the bucket for research.”
Duff started a petition asking the federal government to step up.
“They need millions and millions of dollars, not hundreds of thousands of dollars,” he said.
And they’re urging it to happen sooner rather than later.
“Time is everything to somebody with ALS. Therefore, we want everything to move fast,” said LaSaga. “But unfortunately the world just doesn’t move as fast as we want it to move.”