Vaughan woman delivers 100-signature petition to local MPP about drug coverage

Yorkregion.com
April 16, 2014
By Adam Martin-Robbins

Connie Palumbo is trying to enjoy her golden years, but she’s finding it harder and harder to do these days.

She has pulmonary fibrosis, an incurable disease that causes scarring, which stiffens the lungs making it difficult to breathe.

Eventually, the scarring becomes so thick that the person’s lungs cannot take in oxygen and they suffocate.

Mrs. Palumbo has reached the stage where she has to carry a portable oxygen tank with her virtually all the time, as even walking short distances leaves her struggling to breathe.

“I feel like a little dog on a leash,” said the 72-year-old, longtime Vaughan resident.

Pulmonary fibrosis is rare and hard to diagnose.

It afflicts an estimated 30,000 Canadians and it is believed about 5,000 die from it each year, she said.

Until recently, the only real hope for those with the disease was to get a lung transplant, which isn’t easy.

Mrs. Palumbo has been told that’s not an option for her, since she’s had cancer.

But now there is a drug called pirfenidone, marketed as Esbriet, which has been deemed effective at treating those with mild to moderate idiopathic pulmonary fibrosis.

It’s not a cure, but it seems to work well at slowing the progress of the disease, she said.

“This drug, I think, is my only salvation,” said Mrs. Palumbo, who has three children and six grandchildren. “People that have fibrosis only live three to five years, so this might extend my life.”

Esbriet was approved by Health Canada in 2012, but it costs about $100 a day and is not covered by OHIP, she said.

As a senior citizen on a fixed income, without a private drug plan, it’s just not affordable.

That’s why Mrs. Palumbo is joining several others across the province calling for the Ontario government to cover the drug under the provincial health insurance plan.

Last week, she presented Vaughan Liberal MPP Steven Del Duca with a petition bearing more than 100 signatures, asking him to press the issue with the government and, specifically, with Health Minister Deb Matthews.

Mr. Del Duca committed to presenting the petition in the Legislature, possibly this week, and plans on writing a letter to the health minister.

"I would encourage the government to do what it can to provide as much support as possible,” he said. “It’s a fairly complex process around getting approval for drug coverage but, as the MPP, it’s my job to represent my constituents, whether they’re facing good times or tough challenges, like Mrs. Palumbo is.”

Esbriet went on the market in Canada in January 2013, but a few months later the Canadian Drug Expert Committee recommended against listing it to be covered under provincial health insurance.

Results from two previous trials were inconsistent, the committee’s decision noted, and “there was insufficient evidence to determine if pirfenidone provides clinical benefit for mortality or quality of life”.

Ontario’s Committee to Evaluate Drugs agreed with that decision in May 2013.

But in February, InterMune, the drug’s manufacturer, released results from a new trial in the United States, indicating it was more effective than previously thought.

David Jensen, a spokesperson for the ministry of health and long-term care, wrote in an email that the company has committed to submitting new clinical data later this year to the Common Drug Review - the process for assessing drugs and making recommendations to publicly funded drug plans - for further consideration.

And, he added, ministry officials have met with InterMune representatives to review the data and discuss next steps.

 Mrs. Palumbo, meanwhile, plans to continue circulating her petition and is considering presenting another batch of signatures to Mr. Del Duca in a couple of weeks to keep the pressure on.

“I hope he gets some results because it is very expensive,” she said.