POLL: Should the BC Gov't pay for this drug?

Health, well-being, medicine, aging.

Should the BC Gov't pay for this drug?

1. Yes
2. No
Total votes: 18

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POLL: Should the BC Gov't pay for this drug?

Post by grammafreddy »

North Vancouver man denied life-saving drug
A year-long course of Soliris costs $500,000
CBC News
Posted: Apr 10, 2011 3:28 PM PT
Last Updated: Apr 10, 2011 3:28 PM PT

A 22-year-old North Vancouver man has said he is facing a death sentence because B.C. will not fund the only medical treatment that could save him.

Garrett Shakespeare's red blood cells have a protein deficiency that causes his immune system to attack them, but the drug to treat it effectively costs $500,000 a year.

Shakespeare's rare blood disorder is known as paroxysmal nocturnal hemoglobinuria, or PNH, and besides the symptoms of excruciating abdominal and kidney pain, it causes blood clots that could kill him.

Shakespeare takes a variety of medications, including the steroid Prednisone, to manage the symptoms, but they don't work that well, he said. And one blood clot in the wrong place could be fatal.

"A report said that 50 per cent of people with PNH die within 10 years of diagnosis," he said.

Shakespeare was diagnosed when he was 11, almost 12 years ago.

Shakespeare said his doctor has petitioned the province's pharmaceutical board for an exemption that would allow him to get the drug, Soliris, through the B.C. Ministry of Health. Soliris is the only drug that can treat the underlying cause of PNH. The petition was denied.

Better outlook elsewhere

Barry Katsof, the president of the Canadian Association of PNH patients, has the disorder as well. But Katsof is living a normal life free of symptoms in Quebec, where the provincial government covers the cost of Soliris.

"It's incredible that governments in Canada are refusing to pay for this treatment when it's been proven to save lives," Katsof said.

Katsof said Canada is the only country in the developed world that refuses to fund Soliris because of the cost.

"You can't get a cost-effective model in a rare disease drug because there's so few people in the economic model," he said.

"The bottom line is: this drug has been proven to save lives. It's very black-and-white," Katsof said.

For now, Shakespeare tries to maintain an active life. He works as a DJ and is also a lifeguard and swim coach at the North Vancouver Recreation Centre.

"I try to stay really busy but it's hard because of the anemia," he said.

"I'm just tired a lot, and the pain is really frustrating to deal with all the time."
With files from the CBC's Mike Clarke, in Vancouver

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Re: POLL: Should the BC Gov't pay for this drug?

Post by Triple 6 »

This mans life can be prolonged with taking the drug? Yet BC won't approve it? Kinda playing god. Typical politics.
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Re: POLL: Should the BC Gov't pay for this drug?

Post by prairieflower »

I believe that the fair pharmacare program should cover some of this man's medications. If this is such a rare condition, you would think that the drug companies would help pay for a portion of the medication. I think his doctor should push harder to get some sort of coverage or discount to help him.
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Re: POLL: Should the BC Gov't pay for this drug?

Post by JLives »

Why is the drug so expensive?

Of course we should cover it, the reason we have our healthcare system is so people don't go bankrupt over sickness. I don't believe in putting prices on people's lives.
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Re: POLL: Should the BC Gov't pay for this drug?

Post by oneh2obabe »

jennylives wrote:Why is the drug so expensive?

It's classified as an orphan drug meaning it's a drug that treats disorders affecting fewer than 200,000 people -- which are "one of the fastest-growing areas in pharmaceuticals" and can be "extraordinarily costly" for consumers. The drugs often are extremely expensive because they are developed for a small pool of patients and "because developing any new medication is a long, risky and costly undertaking," the Courant reports.

The pharmaceutical industry estimates that the cost of developing a drug costs $800 million from inception to human clinical trials, and only 30% of experimental drugs ever receive approval. As a result, "when it comes time to affix a price to an orphan drug, companies are eager to recoup their investment quickly," the Courant reports. The increase in orphan drug development activity can be attributed to a 1983 federal law that offers tax breaks and market exclusivity for such products, as well as the "realization by smaller pharmaceutical companies that the drugs represent a lucrative entrepreneurial niche," according to the Courant.

Orphan Drug Profiled
The Courant profiled the orphan drug Soliris, made by Alexion Pharmaceuticals. Soliris is designed to treat paroxysmal nocturnal hemoglobinuria, a life-threatening blood disorder that affects 10,000 people worldwide. The wholesale price for a year's treatment of Soliris is $389,000US. Many people with the disorder are expected to receive their first dose of the medication this month, and health insurers are "in the early stages of evaluating their policy" on the drug, leading many patients to worry whether they will be able to afford it, the Courant reports. Bill Sidford, a participant in clinical trials for Soliris, said, "There's a lot of concern. Do you have to become indigent to afford it? Is it being priced so we can't receive it? Who has accessibility? Do you have to give up everything else to afford it? At this point, it's all conjecture." David Araten, an assistant professor of hematology at the New York University School of Medicine who has treated patients with PHN, said, "For patients who do well on this drug, it's like night and day. For them, it's going to be worth every penny, ... and I am certainly hoping the insurance company will fully cover the cost of this drug." Lindsay Shearer, a spokesperson for CIGNA HealthCare, in an e-mail wrote, "Whether or not a medication is categorized as an orphan drug does not determine our coverage policy. CIGNA covers FDA-approved medications consistent with their FDA labeling, according to the terms of the member's employer-sponsored health plan." Many health insurers have a $1 million lifetime expenditure cap, meaning a patient receiving Soliris at a cost of more than $300,000 a year likely would lose coverage after two years, according to Abbey Meyers, president of the National Organization for Rare Disorders.
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Re: POLL: Should the BC Gov't pay for this drug?

Post by Captain Awesome »

I think this decision has to be made by a panel of experts weighing many factors including life expectancy after treatment, risk factors such as drug use or high risk activities to make sure money is not being wasted, and alternative treatments and their results.
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Re: POLL: Should the BC Gov't pay for this drug?

Post by Roadster »

I believe the experts have spoken and this man is being denied. Lets say one of us needed it right now, what would WE say then?
I say the companies make enough from the rest of us already and they make most of their drugs to manage symptoms only but not cure and that is on purpose IMO, so since we are on a life long road of paying their wages while they piddle around with stuff that is meant to keep us coming then surely they could at least help with RARE diseases and give a guy a break for a years worth and so could the government since they are closely tied with these companies.
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Re: POLL: Should the BC Gov't pay for this drug?

Post by oneh2obabe »

Ontario had refused treatment for this 23 year old man but were paying for a 73 year old woman? Reversed their decision when they were asked why patients in one part of the province were getting it, while others were denied. Last line in article tells you exactly what drug companies think of reducing costs to patients on the so-called orphan drugs.

* * * *
Lucas Maciesza is getting a “second lease” on life.

A potentially lifesaving $500,000-a-year clear medication was slowly infused into Maciesza’s right arm on Tuesday, courtesy of the London Health Sciences Centre.

Who should pay for Maciesza’s prohibitively expensive medication has been debated in the Legislature for days. That followed a series of Star stories focused on why patients living in one part of the province can access lifesaving medication while others can not.

As the drug made its way down the intravenous tube through Lucas’s arm, he kept thinking to himself that this could be his “second lease on life.”

“I was praying that this would be good,” he said from his hospital bed. “I just want to live again. I am finished coping. I want to get back out there.”

The hospital found the money in its global budget to pay for Soliris, a prohibitively expensive drug that all but reverses the deadly march of paroxysmal nocturnal hemoglobinuria (PNH), an extremely rare blood disorder.

But there is no quick fix here.

Provincial health ministry officials are working with Maciesza’s doctors and Alexion, the U.S. maker of Soliris, to determine who will continue to cover the costs of the 26-year-old’s long-term care.

Once a patient is on Soliris, he is on the $500,000-a-year treatment for life.

And there is also the matter of who will pay for treatment for eight other Ontario patients with the same disorder. The disease causes the body to attack oxygen-rich red blood cells and leaves patients prone to deadly internal bleeds, strokes and kidney failure.

“I want this to be good for everyone, not just myself,” said Maciesza.

Dr. Ian Chin-Yee, chief of hematology and professor of medicine at the University of Western Ontario, said it was an “emotional event” to watch Maciesza get the drug, but a long-term solution is still needed.

“The idea is to get him better enough so he can be out of hospital and have the drug paid for,” Chin-Yee said. “I wish I could say the story has a happy ending but we don’t know just yet. We’ve made it through the first hurdle. We have a few left to go.”

Chin-Yee has asked the province to pay for the drug through the exceptional access program, and he’s asked Alexion to pay for it on compassionate grounds. “Lucas isn’t the only patient in the queue for this drug,” he said.

Chin-Yee said the vast majority of PNH patients who get Soliris no longer need regular blood transfusions, and their lives turn around. “There are very few treatments in medicine where the results are so dramatic,” he said.

There is no long-term commitment from anyone to keep Maciesza on the drug, he added. “This patient can’t stay in hospital and any hospital budget would be bankrupt trying to keep the support going,” he said. “The province will have to step up to the plate.”

Maciesza will receive the drug once a week for the first four weeks and then once every two weeks thereafter.

“The hospital has agreed to start the treatment. We are optimistic Lucas will show a good response. This way it could force the hand of the province to support this,” Chin-Yee said.

In North Bay, 71-year-old Norma Metz received Soliris after her hospital covered the costs. Once on it, she improved drastically and the province continued to pay for it on compassionate grounds.

After a Saturday Star story exposed the inequity, the Progressive Conservatives, the NDP and even members of the governing Liberals pressed Health Minister Deb Matthews on why someone could access a drug in one part of the province and not another.

While Matthews won’t comment on an individual patient’s case, she said deciding with who will pay for expensive drugs for rare conditions is not easy.

Those decisions, she said, should be left to medical experts, not politicians.

“It is tough work but we have to rely on the evidence,” she said. “It is not as if there is an unlimited amount of money to spend. If we are going to spend an extremely high price for the drug we have to make sure it is successful.”

Rick Maciesza, a self-employed financial adviser who has championed his son’s cause, was emotional after the medication he has begged for was finally given to his son.

The family has been to a Mexican cancer clinic and all over the world trying to find a treatment for Lucas. He was transferred to London on Monday with a fever, a blood clot in his liver and failing kidneys.

“We are thrilled but concerned there isn’t a longer-term solution in place,” he said.

Progressive Conservative MPP Christine Elliott (Whitby-Oshawa) was thankful that the hospital stepped in to provide the drug. But she added this is not the way to deal with the larger question.

“It is wonderful that they will pay for the treatment for Lucas because it truly is a life-and-death situation,” she said. “That said, this isn’t a complete answer to the problem. There is Lucas’s ongoing support — he’ll require this treatment for the rest of his life.

“In this particular case, the ministry has almost been shamed into this. Families shouldn’t have to depend on the vagaries and choices being made by individual hospitals as to whether or not their family member receives this treatment. This should be policy set by the minister herself.”

Matthews said under the Tories, the politicians made decisions as to who gets drugs such as Soliris. “The opposition didn’t support us on drug reform. They chose to side with the pharmacy retail industry when we came forward with a plan that allows us to fund more drugs for more people.”

In the past four years, the Liberals’ drug reforms, which includes bulk purchasing and eliminating professional allowances to pharmacists, have saved Ontario more than $1 billion.

Alexion said the province has held up approval of the medication for “no valid reason.”

Health Canada expedited the review of Soliris two years ago because of its proven efficacy, said Alexion Canada general manager John Haslam on Tuesday.

Connecticut-based Alexion has responded to “multiple requests” from the Ontario government over questions concerning the medication, Haslam told the Star.

“With the positive review by Health Canada’s medical experts having taken six months, we can think of no valid reason to account for the nearly two years of delay by the Ontario government,” he said by email.

Haslam defended the high cost of Soliris, saying that developing drugs for orphan or rare diseases is a serious investment for drug firms. Since there are “very small numbers of patients suffering from those diseases, reimbursement levels need to be commensurately higher on a per-patient basis,” he said.

http://www.thestar.com/article/895812-- ... aving-drug

article detailing the difference between provinces in paying for this drug
http://www.thestar.com/article/894576-- ... ug-therapy
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Re: POLL: Should the BC Gov't pay for this drug?

Post by BoB76 »

Let life take it's course. I'm sure there is a $500,000/year cure for Cancer but they haven't brought that out yet so why should tax payers flip the bill for one person? It sucks but there is better ways to spend $500,000/year such as allowing the homeless to have $500,000/year in shelter and food to keep them alive. This would allow the judicial system to have healthy people ready to go on jury duty! :sunshine:
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Re: POLL: Should the BC Gov't pay for this drug?

Post by xjeepguy »

jennylives wrote:Why is the drug so expensive?

Of course we should cover it, the reason we have our healthcare system is so people don't go bankrupt over sickness. I don't believe in putting prices on people's lives.

Alexion spokesman Irving Adler said the high price of Soliris reflects several factors, "including an $800 million investment to develop the drug," as well as a 15-year investment of time.
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Re: POLL: Should the BC Gov't pay for this drug?

Post by LadyDove »

Who determines what a life is worth? Only the truly heartless would vote no.

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