What’s the price of life?

Cory
Cory Hurley
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CORNER BROOK  Debbie Mullins feels like a price tag has been put on her life.

Debbie Mullins is photographed at her home in Corner Brook.

Unfortunately, she says she can’t afford the roughly $40,000 a year that it would cost for a new drug to treat her idiopathic pulmonary fibrosis.

The Corner Brook woman was diagnosed in 2004 with the rare disease, which involves scarring of the lungs. Gradually, the air sacs of the lungs become replaced by fibrotic tissue. When the scar forms, the tissue becomes thicker and causes an irreversible loss of the tissue’s ability to transfer oxygen into the bloodstream.

There has also been no effective treatment or a cure for the progressively fatal disease — until recently, when InterMune released the world’s only treatment in the form of a drug. Esbriet — pirfenidone — was approved by Health Canada in October and made available in January for treatment of mild to moderate idiopathic pulmonary fibrosis in adults.

Mullins’ diagnosis came early, the result of hereditary testing. Her father, John Smith, died because of complications from the disease 26 years ago, as did her brother Brian in 2006. Her brother John, who lives in Alberta, has also been diagnosed.

The diagnosis is basically a death sentence, with life expectancy following symptoms between five and seven years.

Mullins was ecstatic at the news of the first treatment. She monitored the progress, asked her doctors and a local pharmacist to watch for it, and waited for an opportunity at an improved life.

The drug was released in Canada in January — as generic versions of it have been in other countries around the world recently. It is not available at regular drug stores.

Mullins went through the appropriate steps to receive a prescription, and filed a claim with her insurance company, but coverage was turned down.

“The drug is almost $40,000 a year,” said Mullins, who has not been able to work in recent years because of the illness.

“My husband (Gerry) doesn’t make that, let alone pay for it.”

She was not surprised by the denial. It is a new drug and very costly, she said, but that doesn’t make it easier for her. The drug is relatively unknown right now, but she believes the denial was mainly due to cost.

“They are putting a cost value on somebody’s life, that’s what they are doing,” she said. “I said to my doctor, ‘So, I am going to die if I don’t get it?’

“They have it out there, and they are going to let people die because they can’t afford to get it.”

Mullins is now hoping to meet with local politicians and get her story to provincial Health Minister Susan Sullivan. The next progression for this treatment, according to her, is to have provincial governments in Canada cover it.

She has been in contact with a national advocacy group, and has signed up with InterMune’s “Inspire” program.

“I am doing whatever I can do,” she said. “I don’t think people in Newfoundland with idiopathic pulmonary fibrosis even know this is out there, and what the cost is going to be, or that they are not going to get it.”

Pirfenidone has been shown to improve the diffusing capacity of people with this disease by up to 25 per cent, Mullins said.

In recent years, the Corner Brook woman has lost a lot of weight and finds it more difficult to breathe.

A couple of years ago, she was enrolled in a drug study by Gilead Science. She believes she was receiving the drug being studied — not a placebo — because her pulmonary functions tests improved every 10 weeks, except once when she had a cold. But that study was discontinued because the company said there were no significant differences noted, and Mullins had to send back the medication.

It was a disappointment, since she had noticed improvements.

Mullins is a suitable candidate for a lung transplant, but she is still not sure whether that is an option she wants to take.

The considerable risks of the surgery and transplant compatability make her uncertain, but she is close to being forced to make that decision. She also said the many medications following the transplant are extremely expensive, and said many of them she would not receive coverage for.

Right now though, a transplant is something she should not even be considering.

“Why should I have to go through a double lung transplant if this treatment is out there?” she said via telephone, trying to catch her breath as she makes her bed.

“It could give me probably two more years before I even have to decide that. It is crazy.”

If she has the lung transplant, she said she will have to move to Toronto, Ont. for two years. She says MCP will cover some expenses, but not all. She doesn’t know how she would be able to afford it. She said it will cost the province a lot of money in medical expenses, if she undergoes the transplant, guessing it will be more than she needs to cover the new drug.

Mullins hopes more people suffering with the disease will come forward and help her lobby for coverage.

“I wish I knew more people in Newfoundland who have it,” she said. “I would love to talk to them, get together and fight. It’s no good to be private about it because you are only going to sit there and die.”

 

churley@thewesternstar.com

Twitter: WS_CoryHurley

Organizations: InterMune, Health Canada, Gilead Science

Geographic location: Corner Brook, Canada, Alberta Newfoundland Toronto, Ont

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Recent comments

  • Sharon
    May 12, 2013 - 09:46

    After quite f few years of these symptoms I have finally been diagnosed with Pulmonary Fibrosis. It is difficult knowing there is no cure and no medication available. I am interested in speaking with Debbie or others with this disease.

    • debbie mullins
      May 17, 2013 - 11:54

      i have no problem speaking with you.i hope you are fighting for this drug.its our only hope other then a double lung transplant.

  • Silenced Healthcare Provider
    April 04, 2013 - 14:33

    Our medical system in this nation is almost broken, and upcoming cuts to healthcare, most notably here in NL, will marginalize it even further. Debbie, if you're reading this, my advice to you would be to first contact your local MHA if you haven't already done so. That would be the person most likely able to enable you to get your hands on this drug that could prolong your life. Many MHAs manage to subvert existing rules to, for example, get chronic welfare or EI abusers funded for courses that they either have no hope of passing, no intention of showing up to all the classes, no intention of working in the intended field, or no chance of finding work in the field locally. Surely they can subvert rules to get you a lifesaving drug to treat a rare disease that no lower or middle class person could hope to ever afford. Other than contacting the health minister, and if the MHA doesn't pan out, my next advice would be to sue the government (crown) in court. People have successfully challenged the law in the past for much less violation of their Charter rights (Canadian Charter of Rights and Freedoms) with respect to access to medication. Tell the judge you cannot afford a lawyer, bring evidence that you have pulmonary fibrosis, evidence of your inability to work due to your disease, evidence of your existing income, a letter from your insurance company stating they won't cover the drug, a letter from MCP and possibly the prescription drug program that they won't cover the drug, research or medical guidelines pertaining to Pirfenidone, a copy of your prescription and letter from your doctor, and most importantly, the Canadian Charter of Rights and Freedoms, Sections 7, 12, and 15. 7. Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof ... 12. Everyone has the right not to be subjected to any cruel and unusual treatment or punishment. 15. Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on ... physical disability. If court doesn't pan out, I'm sure that the generous hearts of the people in this community will have raised enough money for you to get this drug, even if you have to find a cheaper (possibly online) source for it. Most importantly, don't underestimate how much help you can get from the community at large, charities, and other organizations that will want to help but might not yet be aware of your plight.

    • debbie mullins
      May 17, 2013 - 12:14

      thanks for the info.i will do some contacts and see whats happens

  • melvena brake
    April 04, 2013 - 12:56

    Give this lady the drug she needs at whatever cost. Why are we giving so much money to research if the results of it is gonna cost people a price noone can afford. we all need to fight with you debbie, not just those affected by the diseas or we will all be guilty of letting you die. let us know what we the public can do to help..I will pray god hears your needs and you get some good news on this.

  • Helen
    April 04, 2013 - 09:58

    I can't agree with Mrs.Clause more,but it's not only in NL it's all over Canada. They have to fined some way to help these people with the medications.

  • Jennifer
    April 04, 2013 - 09:39

    Thank you Mrs. Clause, I can't agree with you more. We have money for everything else but when someone like this is in need, no one can seem to do anything. Insurance.....you pay for it all your life and when something is needed you are either turned down flat or get very little help after all avenues being taken. I am sure every family knows someone who has been frustrated with the ability to acquire certain medication and can't get it, regardless of their illness. I think more people should speak out and get their stories heard, you never know who is in the same situation.

  • Mrs. Clause
    April 04, 2013 - 08:40

    This poor woman, through no fault of her own she is suffering with this terrible disease. She should not be denied this drug. The Government finds money to treat drug addicts smokers and alcoholics that bring it on themselves but someone that truly deserves help is denied a lifeline. I am so ashamed of this Province, and where does all the money go that is raised each year by the Heart and Lung Association, surely that's what we donate to them for, to help people like this.