BREATHING ROOM
Chantelle Lindsay of North River has lived with cystic brosis for most of her life and despite the fact that there’s a drug that could help her, access is limited and it’s very expensive in Canada.
NORTH RIVER, N.S. – There’s a drug that could transform Chantelle Lindsay’s life. The problem is,she can’t get it.
The 23-year-old North River woman has cystic fibrosis (CF) and has been in the QEII Health Sciences Centre for the past five weeks because she’s struggling to breathe. Medication called Trikafta has resulted in dramatic health improvements for many with CF, but access is extremely limited and costly in Canada.
“She was just moved to a room with one-on-one nursing because of her condition,” said her father, Mark. “She has fluid on her lungs and she’s fighting infection.
“There’s been a fairly rapid decline in lung function during the last six months. It had dropped to 37 per cent and she can’t even do a lung function test now, and she’s losing weight.”
When Chantelle was three months old her parents thought she had a bad cold but tests confirmed CF. Since then she’s had several stays in hospital, went through physiotherapy to loosen the mucous in her lungs and has taken medication. Despite this, it hasn’t stopped her from being active.
“She played hockey, lacrosse and soccer,” said Mark. “She never wanted to be held down. She didn’t want CF to rule her.”
Chantelle had planned to return to Nova Scotia Community College to take the last two courses she needed to complete her training in medical office administration.
“She never wanted pity and this is the first time I’ve posted about her illness, but we really need to get the word out,” said Mark. “We can’t afford to wait any longer. I’m hoping the right person will hear her story and be able to do something.”
CF is a genetic disease that affects mainly the lungs and digestive system. The progressive loss of lung function leads to death for most people with the condition. In 2017, the average life span for Canadians with CF was 33.6 years.
New medicines like Trikafta fight the disease, not just the symptoms, and have helped many people. Trikafta was approved for use in the U.S. last year but the manufacturer, Vertex, hasn’t applied for approval for Canada yet. If it can be obtained it may cost more than $300,000 per year. If Canada had a rare disease strategy, as is the case in several countries, the drug could come in through a special process.
“This drug could be life saving for Chantelle,” said Mark. “We’ve applied
“She never wanted pity and this is the first time I’ve posted about her illness, but we really need to get the word out … We can’t afford to wait any longer” Mark Lindsay
through the drug company for compassionate use and the doctors have supplied all the information required. It’s between drug companies and government now.
“I’ve written letters and spoken to politicians. Everywhere we go, people say they will pass it on. Now, I’m asking people to support this effort and write to politicians.
“Think about how it would feel if it was your child. We’re so close, but we don’t know the outcome if we don’t get this drug.”