For 20 years, since she was 15, Megan Hamblett has been struggling with asthma, an illness commonly perceived to be little more than a nuisance.
"For me, it's not just a bit of wheezing - my asthma can get out of control," she said.
In October, 2008, Ms. Hamblett had such a severe asthma attack that her airway closed completely and she ended up on life support for a week.
"Most people don't realize that asthma can be fatal," said Christine Hampson, president and chief executive officer of the Asthma Society of Canada.
The disease, which affects an estimated three million Canadians, kills about 500 people a year in this country.
"When I see the donations come in from funeral homes, it breaks my heart because asthma is controllable," Dr. Hampson said.
Research shows that only about 40 per cent of asthmatics have their condition under control. Most sufferers simply accept that symptoms and occasional attacks are normal.
"There are a lot of people out there with asthma who are the walking wounded," said . Kenneth Chapman, director of the Asthma and Airway Centre at the University Health Network in Toronto.
"People tend to figuratively shrug and say they're fine while asthma imposes all kinds of limitations on their lives," he said.
A survey done by the Asthma Society found that sufferers consider it normal to require two or more visits a year to the emergency room for treatment of serious asthma attacks.
"For me, that's a jaw-dropper. This is a condition that is imminently treatable - we shouldn't accept crisis management as the norm," Dr. Chapman said.
There are a number of medications used to treat asthma - many of them steroid-based - and Ms. Hamblett pretty well takes them all. The obvious side effect is weight gain: The once-petite, 5 foot 1, 100-pound woman now weighs 145 pounds.
Ms. Hamblett is embroiled in a battle to get another drug, omalizumab (brand name Xolair), an injectable medication that prevents airway inflammation. She took the drug previously for a two-year stretch in 2007-08 and her health improved remarkably, she said.
"For the first time as an adult, I had a normal life," she said. Her lung function, now at 41 per cent, rose to the high 80s while on the drug.
But Ms. Hamblett had to discontinue the treatment when she was fired and no longer had a drug plan. (She cannot discuss the details except to say the dismissal was related to her asthma and there was an out-of-court settlement to her human rights complaint.)
Since then, Ms. Hamblett has tried to get Xolair through government programs. But the drug is not on the provincial formulary, which determines what drugs are covered for seniors and those with low incomes. She also applied to Ontario's special access drug program, which considers requests on a case-by-case basis to cover drugs not on the formulary.
Last month, just days before Christmas, she received the devastating news that her request had been denied because government officials did not feel the treatment was necessary. This despite a letter from her physician saying her asthma had deteriorated markedly since she discontinued Xolair, including that life-threatening attack in 2008.
"This is a matter of life or death for me but I can't afford to pay out-of-pocket," Ms. Hamblett said.
Dosing of the drug, a biologic, is based on weight, and it would cost her about $650 a month. She noted that is a fraction of the cost of her ER visits and intensive care treatment, which the province would cover automatically.
Dr. Chapman, who is not Ms. Hamblett's physician but treats other severe asthmatics, said Xolair "is not a 100-per-cent-throw-away-the-crutches-and-breathe-freely drug, but it works for many patients." He said it should be on the provincial formulary, not merely subject to special access.
Dr. Hampson of the Asthma Society would also like to see Xolair on the formulary. "Having a drug like Xolair is a big issue for a small subset of patients with severe asthma. It's hard to understand why they are being denied an effective treatment," she said.
Dr. Hampson said concerns about the cost to the system are not justified.
"There won't be an opening of the floodgates," she said. In Quebec, which has made this drug available for a number of years, there are only 160 patients taking Xolair, she noted.
"Our goal should be to have people with asthma live symptom-free, and that includes people with severe asthma," she said.