IPF patient still waiting for drug coverage approval

BRIAN BAKER/TOWN CRIER STILL WAITING: A battery of tests stands in the way of Michael Jarvis, who suffers from idiopathic pulmonary fibrosis, getting the green light for funding of his medication, Esbriet.

BRIAN BAKER/TOWN CRIER
STILL WAITING: A battery of tests stands in the way of Michael Jarvis, who suffers from idiopathic pulmonary fibrosis, getting the green light for funding of his medication, Esbriet.

It could be spring before Michael Jarvis gets green light

Michael Jarvis, a sufferer of idiopathic pulmonary fibrosis, might have to wait until the spring to find out if he qualifies for government assistance to help offset the cost of his medication.

While funding for Esbriet, the medication used to treat IPF, has been okayed by the provincial government for its emergency access program, Jarvis is still waiting for approval from his respirologist.

“I personally feel that I have gone downhill a bit, but apparently the tests that I had on Friday, only showed that I was marginally down from six months ago,” Jarvis said, during an early October phone call. “I was led to believe by the doctor that the tests didn’t show a significant decline in my condition.

“Frankly, I’m a bit disappointed because I do feel I’ve gone downhill.”

In January, Jarvis opened up about his struggle with ailment, and the added expense of Esbriet, which would cost him $48,000 a year.

At the time, the provincial government would not pay for the drug because clinical studies were inconclusive.

However, in May the Phase 3 ASCEND Study: A Randomized, Double-Blind, Placebo-Controlled Trial of Pirfenidone in Patients with Idiopathic Pulmonary Fibrosis was presented at the 2014 International Conference of the American Thoracic Society, offering new hope that Esbriet works in patients.

According to the report, Esbriet “significantly reduced” the decline in lung function by 47.9 percent, in addition to the 27.5 percent reduced decline in the six-minute walk test.

Jarvis performed his test in late September, but won’t know if he’s approved until a follow-up test three months later. He has been off of the drug since the summer because his insurance ran out.

David Jensen, a spokesperson for the Ministry of Health and Long-Term Care and for minister Eric Hoskins, told the Town Crier in an email that the government is still looking into the funding, though the province announced at the end of August that it would fund certain patients who passed clinical tests under the Exceptional Access Program.

“The ministry will continue to review new scientific and clinical data on Esbriet as it becomes available, once the manufacturer makes a new submission to the ministry,” he said.

Still, Jarvis, who suffered a stroke this year while on vacation in Newfoundland and subsequently lost sight in one eye, has been given radio silence.

“It’s not that I’ve been turned down, but because of the length of time I suspect it’s no,” he said.

Dealing with the day-to-day activities of life has been a challenge, he said.

“I have to plan for any inclines in my plan — I have to take that into account — and stairs are a real pain,” he said. “It really does impede what my life was like.

“There are so many things that you used to enjoy doing that are just beyond me now.”

 

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Toronto-based journalist, fighting the power one deadline at a time.

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1 Comment

  • I was diagnosed of Pulmonary fibrosis in March 2014, my doctor told me it has no permanent cure, i was given medication to ease the situation, this affected me so badly as i constantly go short of breath, this continued till a friend of mine Karen told me about Ejiro Herbal Clinic were she bought herbal medicine that totally cured her mother of pulmonary fibrosis, I contacted this herbal clinic via their email and purchased the pulmonary fibrosis herbal remedy, i received the herbal medicine within 7 days and when i started usage my lungs gradually got better until i even forgot i had pulmonary fibrosis, i went back to my family doctor to test for idiopathic pulmonary fibrosis my doctor confirmed my lungs tissue were 98% repaired.

     
 

 

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