The Price of a Life: Jamie McKinley's story

Jamie and Meme McKinley in Jamie's half-assembled Bush Caddy R120 (Brian Goldman)

Jamie and Meme McKinley in Jamie's half-assembled Bush Caddy R120 (Brian Goldman)

In Canada, we like to gloat that unlike the U.S., getting sick or injured here doesn't bankrupt us.  Last month, I traveled to Beaver Harbour, on the Bay of Fundy, about 70 kilometers west of Saint John, New Brunswick, to meet a man for whom that oft-said cliché just isn't true. Jamie McKinley is dying of glioblastoma multiforme or GBM, a highly malignant form of brain cancer.  His main and perhaps only hope to extend his remaining life is a drug called Avastin. But the drug, which costs a staggering $10,000 per month, is not paid for by the New Brunswick's medicare plan. Jamie can't afford to pay for it himself. This week on White Coat, Black Art, we look at the price of a life and the gut-wrenching dilemma of promising new treatments that come with a price tag beyond the reach of most of us and maybe medicare too.

Jamie underwent radiation and chemotherapy; the latter was so severe that with each new round of treatment, he had to psych himself up to just to swallow the pills. Since that time, Jamie has vowed to himself he will never take high-dose Temodal again.

Around the time Jamie underwent conventional treatment at a hospital in New Brunswick, both his mother and his brother had watched a television show that described an experimental vaccine offered in a clinical trial at Duke University Medical Center in Durham, North Carolina.  The vaccine was prepared from tissue samples obtained from Jamie and injected into his body so that his immune system would develop antibodies that would attack the GBM.  To be a part of the study, Jamie would have to return to Duke every 28 days to receive the vaccine, and then get an MRI to make certain the GBM wasn't growing larger.  If that happened, the vaccine would be deemed a failure and Jamie would be removed from the study.

For more than four years, Jamie made the monthly trek to Duke at his own expense. As he and his wife Meme explained, the experimental vaccine was free. While receiving treatment at Duke, Jamie's could stay with his brother, who lived nearby. However, Jamie had to pay out-of-pocket for travel and monthly doctor -- a total of $1,500  a month. Prior to traveling to Duke, a local fundraiser helped generate $10,000  to offset those costs.

Jamie has chronicled many of his impressions of his treatment as well as living with GBM on his blog.

That routine carried on for more than four years. As strange as it seems, that time frame made Jamie a long-term survivor of GBM. When he was initially diagnosed he was told he had a 15 percent chance of living one year without treatment -- and a 15 per cent chance of living 2  years with radiation and chemotherapy.

Then, in June 2012, the unthinkable happened. An  MRI showed the GBM was growing larger.  Here is what Jamie wrote on his blog: "It appears that my cancer has returned. The latest MRI shows a new enhancement that was not on the previous MRI. I have talked with the neurosurgeon here in Saint John and felt the best option was to go in again and remove as much as possible. This will happen sometime in the next two weeks."

On July 6 2012, Jamie underwent surgery to remove the newly-growing GBM.  Two-and-a-half weeks later, he received confirmation that he had recurrent GBM.  Jamie was officially out of the experimental vaccine trial. His doctors recommended that he go back on the chemo drug Temodal. Remembering how much nausea he experienced the first time around, Jamie said he would only agree to take Temodal at a lower dose than the first time around.

Enter Avastin. Also known as bevacizumab, Avastin is a monoclonal antibody drug that slows the growth of cancers by slowing the growth of new blood vessels. Avastin was first approved by Health Canada as a treatment for colorectal, lung, kidney, ovarian and breast cancers. In November 2011, Health Canada suspended the drug's approval for metastatic breast cancer following a similar move by the U.S. Food and Drug  Administration after finding "no evidence the drug extends the lives of women with metastatic breast cancer and that use of the drug is associated with some serious risks that included heart attacks, severe high blood pressure, bleeding and the development of small tears in parts of the body such as the nose, stomach or intestines."

But previously,  in March 2010, Health Canada had approved Avastin as a single agent for the treatment of patients with GBM -- following relapse or progression of the cancer --  as happened in the case of Jamie.  According to a Health Canada advisory, Avastin was approved for GBM because studies demonstrated that while the drug did not cure patients, it did prolong survival, stabilized, and in some cases improved the cognitive function of people with GBM.

That's the good news.  The bad news for Jamie and others like him is that not every province pays for the drug. So far, only three provinces - British Columbia, Saskatchewan and Manitoba - foot the bill for Avastin in patients with recurrent GBM; seven other provinces including New Brunswick -- where Jamie lives -- do not. 

That means if Jamie wants to take Avastin, he has to pay for it himself - at a cost of up to $10,000 dollars a month. 

Unfortunately, Avastin is one of a growing array of ultra-costly prescription drugs that are far beyond the price range of the vast majority of Canadians. A spokesperson for Roche, the company that markets Avastin, told WCBA that the total cost of Avastin therapy will vary based on the length of time the patient needs treatment until disease progression. On average, based on a weight of seventy-seven kg, the cost of Avastin per cycle of treatment is nearly four thousand dollars.

As CBC News has reported, John Philippe, another New Brunswicker with recurrent GBM, has had success using Avastin at a dosage prescribed by his doctor. Philippe paid for the  by plunking down his credit card and through fundraising. 

The story of Avastin highlights the growing problem of astronomically expensive drugs.  A study published last January in the Canadian Medical Association Journal found that more than one in four Canadians without drug insurance say they can't afford the medicines prescribed by their physicians.

When you factor in the cost of very expensive medications, the problem is much worse.  In an article in the Globe and Mail, health policy reporter and columnist Andre Picard told the plight of Julie Easley, a young woman with Hodgkin's lymphoma who racked up $26,000 in debt purchasing everything from anti-nausea medication ($23 a pill) to Neupogen, a drug that raises white blood counts battered by chemo, at a cost of $1,600 a month.

If anything, the trends are only going one way - up -- way up. Drugs for multiple sclerosis, rheumatoid arthritis and inflammatory bowel disease cost thousands of dollars per patient course per year. When patients have to pay, they flirt with personal insolvency. And when the province pays, then the health care system itself is threatened with bankruptcy. 

WCBA spoke with Saskatoon health policy guru Stephen Lewis, who said on the program that the health care system's benchmark for how much it's willing to pay for an extra year of life is roughly $50-60,000  per year.  But there are exceptions. Multiple sclerosis is one of them. For that disease, the provinces seem willing to pay more per year of quality-adjusted year of life.

The other maddening aspect for people like Jamie is that what they get in terms of treatment is a function of where they live. If Jamie were to move to a province that pays for Avastin, he could get it for free. 

It begs the question --  why do some provinces say yes and some say no?   Stephen Lewis says different provinces can legitimately come to different decisions.  In 2011, the Canadian Glioblastoma Recommendations Committee concluded "Clinical trials, when available, should be offered to all eligible patients. In the absence of a trial, systemic therapy, including temozolomide rechallenge or anti-angiogenesis therapy  -- that's Avastin -- may be considered."  

That's not a ringing endorsement; but it does provide cover for provinces that pay for the drug and those that do not.

The New Brunswick government responded to our request for an interview, by showing us a statement released in August by Dan Coulombe, Executive Director of the New Brunswick Cancer Network.  Regarding Avastin, the statement says Avastin was reviewed by two national panels in 2010 and again in 2011.

 "Both reviews found insufficient evidence of prolonged survival in comparison to other existing treatment options and therefore recommended that Avastin not be funded."  We've appended his full response at the bottom of this post.

There have been calls in New Brunswick for a catastrophic drug plan to pay for medications that Jamie McKinley and others cannot afford.  

But there is no guarantee that such a plan would cover Avastin for patients with GBM.  Here's what Dan Coulombe of the New Brunswick Cancer Network had to say about that:

 "A catastrophic drug program would also be based on the same principles that we currently follow, which is to say that drugs would be covered on the basis of evidence-based recommendations by established drug review committees."

I've kept up a steady correspondence with Jamie since we met last month.  His is tolerating the low-dose chemo, and his GBM is not galloping along. Earlier this week, he got the good news that the most recent MRI showed his cancer has not grown larger in the last two months.  

Jamie McKinley isn't betting New Brunswick will start paying for Avastin in time for him.  Here's what he had to say on his blog when he learned that the GBM had come back.

"I got almost 4-1/2 years in, which is a miracle with GBM. I am very fortunate to have got that time in with my family and friends. I don't know what the road ahead holds for me, but will keep fighting on. I have great support at home and beyond. I have met great knew friends through this ordeal, so have nothing to complain about. I'll keep this blog up as long as I can."


Statement from Dan Coulombe

Executive Director of the New Brunswick Cancer Network Aug, 2012

Modern science has made significant progress in the treatment of cancer today an dthere are numerous drugs available to help fight the disease.

The availability of an increasing number of oncology drugs, led to the provinces agreeing to a Joint Oncology Drug Review process, which has now evolved into the pan-Canadian Oncology Drug Review. Provinces rely on provincial and national expert review committees, which make evidence based recommendations regarding the funding of drugs by provinciall health care systems. 

In new Brunswick, the Department of Health recieves recommendations from the pan-Canadian Oncology Drug Review, the National Common Drug Review and the Atlantic Common Drug Review on all new drugs, as well as new uses for existing drugs. In addition, the New Brunswick Cancer Network has an advisory committee, comprised of oncologists and pharacists from both regional health authorities to support the process.

Avastin is one drug in particular that has been the subject of media attention of late especially in its treatment of glioblastoma (GBM), an aggressive form of brain cancer. 

 

Avastin has been on the market for many years and during this time, medical scientists have completed various studies into its uses.  Avastin's effectiveness in treating GBM was reviewed by the national oncology drug review in July of 2010 and again in June of 2011.  Both reviews found insufficient evidence of prolonged survival in comparison to other existing treatment options and therefore recommended that Avastin not be funded.

 

Many Canadian provinces do not cover Avastin for GBM.

 

In New Brunswick, Avastin is currently funded for use in hospital-based chemotherapy programs for the treatment of metastatic colorectal cancer for which there is evidence of the drug's effectiveness. 

 

When making decisions about which drugs to fund in the public system, we must rely on evidence. Currently, in New Brunswick, it's a challenge to fund the drugs which do meet all of the requirements and are recommended by the national bodies.

In terms of where a catastrophic drug plan fits into this process, government has stated its commitment to improving drug coverage for New Brunswickers.   The Advisory Committee on Health Benefits, chaired by Dr. Dennis Furlong, has been given the mandate to develop a mechanism to provide a prescription drug plan for uninsured New Brunswick residents. The committee recently completed a public consultation process and is now reviewing the input and submissions received and will make recommendations to government. 

While a catastrophic drug plan would undoubtedly be of help to New Brunswickers, it will not cover all drugs available on the market. It's reasonable to say that a catastrophic drug program in New Brunswick would also be based on the same principles that we currently follow, which is to say that drugs would be covered on the basis of evidence-based recommendations by established drug review committees.

Certainly cancer is a terrible disease that presents unspeakable hardships for the families affected by it and our hearts go out to anyone in this situation.

 

While cancer drugs can be a life-extending or lifesaving product from years of medical research and trials, their use must be evidence-based.  Treating a disease with a drug that has not been proven to be effective does not benefit the health care system, the patient or their families.    



Statement from Roche, the makers of Avastin 


Why is Avastin so expensive?
Roche's medications for people with cancer are major advances that work in new ways to help people with cancer live longer and better lives.

When Avastin was originally approved in 2004, it was the first of a new class of cancer medicines. In the eight years since its first approval, it has helped people in five different cancer types, including brain cancer. Many have lived a longer time without their disease progressing, and in certain cases Avastin has extended their life.

Finding innovative medicines to achieve progress in oncology is a complex process ? it takes more than 10 years with thousands of compounds screened and hundreds of experiments to identify one that brings the desired benefit for patients (1).
 
 Why doesn't Roche drop the price of the drug?
Roche's cancer therapies are major advances that work in new ways to control cancer or provide a better chance of cure. The price reflects this innovation and the effort needed to develop a novel treatment for a complex disease.
 
Reference
EFPIA, The Pharmaceutical, Industry in Figures: Key Data 2009 Update, available here.
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