© — Photo by Shawn Hayward
Geneva Norris with a machine that helps her overcome the effects of idiopathetic pulmonary fibrosis, a disease that damages the lungs over time and reduces life expectancy.
By Shawn Hayward
Geneva Norris is finding it harder to breathe these days, and the only drug that can improve her condition isn’t covered by the provincial Prescription Drug Program.
Norris has idiopathic pulmonary fibrosis (IPF), a disease that scars the lungs, causing shortness of breath. Health Canada estimates there are between 5,000 and 10,000 people with IPF across the country.
Norris says the condition has reduced her ability to do anything physical. She has to take breaks while doing the smallest chores, such as washing dishes. Norris often has to sit down or lean on something after any kind of activity.
“It’s not nice, when you’re finding it difficult to breathe and you don’t know if you’ll be able to get your breath,” she says. “It’s difficult sometimes.”
At first, doctors thought Norris just had asthma, until 2007 when she went to see a lung specialist in St. John’s. The doctor diagnosed her with IPF, and Norris had surgery to remove part of her lung that had been scarred by the disease.
Now Norris says she has difficulty even going for a walk, and eventually she may have to use a wheelchair.
There weren’t any treatments to reduce the effects of IPF until Health Canada approved a drug named Esbriet in 2012. The drug, a trademark of Intermune pharmaceutical company, significantly reduced the effect of the disease on people with mild to moderate IPF, according to Health Canada, after it tested Esbriet on 692 patients. The Health Canada report noted there aren’t any approved treatments for IPF in Canada right now.
Despite the Health Canada ruling, Esbriet isn’t covered under the provincial Prescription Drug Program. The Department of Health and Community Services uses Canadian Drug Expert Committee recommendations to decide which drugs are covered under the drug program, and in the spring of this year the committee recommended Esbriet not be covered under provincial drug plans.
The committee’s final report stated that its studies found the drug didn’t provide significant improvement to patients’ conditions or life expectancy.
This contradicts what the Canadian Pulmonary Fibrosis Association says about the drug. Robert Davidson, a spokesman for the association, says Esbriet gives sufferers hope.
“In our opinion Esbriet is very beneficial for patients with mild to moderate idiopathic Pulmonary Fibrosis,” he said in an email statement. “It not only slows down the scarring process, but also improves the lung function so that patients have a better quality of life and exercise tolerance. The slowing down of the scarring process lets patients live longer and therefore gives them time, which is very important as new therapies may be developed during that extra time.”
The association estimates there are 270 IPF sufferers in the province, and about 46 will die each year, or about four per month.
While no province in Canada pays for the drugs because of the drug committee ruling, it’s covered in many other countries, including the U.K., France, Japan, Sweden, Italy, France, Germany and Spain.
Norris says paying for the drug would cost her $40,000 a year, something she can’t afford. She wrote to Ross Wiseman, the MHA for Trinity North, asking for help getting the Esbriet covered under the drug program.
Wiseman says his role in situations like these is to make sure the province and the expert committee have the right information to make an informed decision on which drugs to cover.
“I try to assist, because individuals who live with certain disorders, or umbrella organizations who represent people with these disorders, become great sources of information,” he says. “They have access to and are able to provide commentary and new documentation, to assist provinces in asking the joint expert panel to review again. My role is trying to identify the gaps that may exist in information that may be provided to the province, to use in their submission to the joint panel.
“What Geneva has been very successful in doing is being a great source of information. The organization that’s she’s a part of, again, is pulling together information.”
Norris says she hopes the government will reconsider its decision not to fund Esbriet, as it’s the only way to alleviate the effects of her disease.
“It’s limited me to pretty well nothing,” she says. “I can’t do anything.”