TRURO, N.S. – Medication from Japan has made such an improvement in Terri Bishop’s life, she’s now happily sharing information to help others suffering from ALS.
Terri was diagnosed with ALS in March 2016. It was a visit to Dr. Hiide Yoshino, in Japan that led to her becoming the first person to bring Edaravone to Canada.
“I figured if it works for me it might work for somebody else,” she said. “If it slows down ALS people are able to go without invasive treatments for longer.”
The drug was so beneficial Terri and her family were surprised. She has gone from wearing a brace on her right thumb and suffering pain if she tried to straighten her fingers, to being able to use her hand to pick up items again in normal fashion. She has less cramping, barely feels twitches and her calves feel less stiff.
Since her story became public she’s been contacted by dozens of people looking for more information. Now there’s a way for them to get Edaravone without the long trip to the clinic in Japan.
“So far we’ve heard from 52 people interested in it,” said Terri’s husband, Bruce. “Three or four want to go to the clinic in Japan but most want to use the courier service. It’s a pretty tiring trip.”
The Bishops found out the medication could be couriered if someone in Japan was willing to pack and ship it with all necessary documentation. They talked to one of the doctors at the Japanese clinic, who was already shipping it to other countries, and he agreed to send it to Canada. Terri’s first shipment to come by courier arrived Sept. 22.
“We wanted to make it as simple and easy for families dealing with ALS – especially the person with ALS – as possible,” said Bruce. “One-stop shopping was our goal.”
Terri said her husband is modest when talking about the courier service. He spent about three weeks gathering information and making the arrangements.
There are several people now waiting for the drug to arrive, and a few others who have already received it.
Some accuse the Bishops of giving false hope. But many are seeing positive results, and the Bishops love to hear from other people who have been helped by the drug. One woman in Toronto has regained more than 30 per cent use of both hands.
“It’s really wonderful to be able to help people and provide some hope,” said Terri.
Edaravone is expected to be available in Canada in late 2018. It recently became available in the U.S. but costs about $1,300 Cdn per dose, compared to $48 Cdn for each dose in Japan. Americans with insurance are sometimes getting it from Japan because there is such a long wait for approval, and the sooner a person gets the drug the more it can help.
An online ALS support group will soon be active. The ALS Society of New Brunswick and Nova Scotia will be contacting members and anyone with ALS, caregivers and family members interested in the group should contact the society.