It boggles the mind, as I’ve said so many times before. But I’ll say it again, this time in reference to a conversation I had earlier this week with a senior Ontario Ministry of Health bureaucrat, about provincial funding for a relatively new anti-cancer drug. The drug is Bevacizumab. That’s its generic name. It’s better known by its trade name Avastin.
The ministry has evaluated the drug for use as a treatment for brain cancer and decided not to include it on a list of prescription drugs the province would help pay for. That leaves hundreds of people suffering from this terrible disease having to pay $4,000 per month for the Avastin treatments they are taking in hopes of extending their lives for months. The latest expert opinion of a team of brain cancer specialists who recently published the paper, Canadian Recommendations for the Treatment of Recurrent or Progressive Gioblastoma Multifore (GBM) the most common and very aggressive form of brain cancer, says anti-angiongenic drugs like Avastin have proven effective in extending the survival time of up to half the people suffering from the disease.
Avastin has already been approved, or listed, by the Ontario ministry for funding for colorectal cancer. Health Canada has approved it for use in Canada as a brain cancer treatment. British Columbia has approved it for funding for brain cancer treatment under its drug program.
But a committee that evaluates new cancer drugs for funding under Ontario’s drug program recently recommended against adding Avastin to the list. And, and Diane McArthur, the newly appointed executive officer of the Ontario Public Drug Program, and an assistant deputy-minister, told me she had already accepted that recommendation and so informed Roche, the pharmaceutical company that manufactures Avastin.
McArthur said the ministry’s drug evaluation committee (CED) found insufficient evidence that the benefits of Avastin for brain cancer patients justified the cost of adding it to the fundable drug list. This is a decision cancer patients, especially those with limited financial resources, or none, were waiting anxiously for. One might even say, desperately. And I know that from recent contact with the Bruce Peninsula father of a 35-year-old son who lives in Toronto and is fighting for his life against brain cancer, and buying precious time with the help of Avastin.
Tony Barton who delivers the Saturday edition of this newspaper to a large rural area has spent the last 10 months doing everything he can to help his son Graham. He recently wrote a letter to Helen Stephenson, the now-former executive officer of the Ontario drug program, asking her to list Avastin, despite the negative committee recommendation. The last he knew the final decision was to be made by Stephenson very soon. Tony stopped by “the farm” last Saturday and asked if I might be able to help get some media coverage for the issue.
I said I would do what I could to spread the word, and find out what I could about where the evaluation process stood. I was able to arrange a phone interview with the senior health ministry bureaucrat who turned out to be Diane McArthur. And I learned the news brain cancer patients and their doctors should have been told about right away. One would hope, or expect, the ministry has some sort of mailing list in situations of such vital interest to such people.
But as of my interview with McArthur earlier this week no one was in the know, other than Roche, the big pharmaceutical company that makes Avastin, and ministry insiders.
The ministry had not notified brain cancer patients and their doctors or otherwise made the decision public with a detailed explanation of why Avastin won’t be listed because it’s “A little behind” on the writing and on-line publishing of its “transparency bulletins,” McArthur told me. “We are working to get them up to date,” she added.
I could hardly believe my ears. How’s that for Orwellian, bureaucratic bafflegab.
I asked McArthur if the evaluation committee’s report, with its negative recommendation, was public information. She said there was no actual report, or at least no final version of it. The transparency bulletin and the committee report were one and the same thing, she explained.
She hastened to add several times that Roche was welcome to submit more information, and the door was open to reconsideration of the issue.
I suspect there was considerable scurrying around in the ministry to speed up process to get a bulletin written and published on-line. But that day, the first thing I did afterwards was call Tony Barton to tell him what I had learned. He was disappointed to say the least, and at a loss about what to do next. It was especially hard to understand how the evaluation process had led to a negative outcome when, as he understood, a subcommittee of cancer experts had initially advised in favour of listing Avastin. McArthur could only say the evaluation committee looked at all the available data and came to its negative cost-benefit recommendation on that basis.
Avastin is anti-angiogenic drug designed to work by attacking the dense network of blood vessels that typically feed the deadly tumour growing in a person’s brain when they have GBM. An estimated three people in every 100,000 in North America will be struck by it. Tumour growth is very aggressive. Few people (8.7 percent) survive untreated for more than two years. The survival period, even with treatment, which could include chemotherapy, radiation, and various other drugs, is usually no more than 12 to 18 months. If someone is fortunate enough to survive their first fight with GBM there’s a 90 percent chance it will reoccur.
I can hardly imagine what Tony Barton’s 35-year-old son Graham is going through, as he fights against this dreadful thing that has invaded his brain. Some days are much worse than others, like the day in late July when he was rushed to Toronto Western General Hospital. His family was told to he had just a few hours to live, at best.
But Graham’s spirit is strong. He survived that crisis with the help of massive doses of drugs that would either help kill him or save his life. He has fought back, and cheated death several times since he suffered his first major seizure and was diagnosed with brain cancer in 2005. Surgery, chemo and radiation therapy, and anti-cancer drugs helped him fight it off then. His condition stabilized after 12 months of treatment and he was able to live a fairly normal life and go back to work as a web site designer. But in late 2009 on a trip to Berlin with his wife Deb, he suffered a major seizure. He was rushed back to Toronto. Doctors there didn’t feel surgery was an option. But Dr. Rolando Del Maestro, a specialist in Montreal, thought otherwise. He operated last March and was able to remove 60 percent of the resurgent tumour.
Dr. Del Maestro and the oncologist in Toronto Graham had been seeing then agreed he might benefit from treatment with Avastin. Beneficial results after the first treatment were clear and remarkable, Tony told me in an interview at his modest, rural home on the Bruce Peninsula where he and his wife Joan raise chickens, grow vegetables and otherwise live a simple, quiet lifestyle. But they’ve spent much of the past 10 months in Toronto helping take care of Graham. Tony was his son’s main caregiver from the early spring of this year, to the end of July.
Graham and his wife are so far “managing” to pay the $4,000 monthly costs of his twice-monthly Avastin treatments, with help from his website-design employer, Pixal Pushers. Other family members, including Tony and Joan, are poised to help too if necessary.
So far, “they can manage,” Tony said. But there must be many other people among the 500 brain cancer patients in Ontario he understands are also getting Avastin treatments who are struggling financially. There are probably others who can’t afford to take it at all, he agreed.
As a result an untold number of people afflicted by this dreadful disease are missing out on Avastin’s life-extending benefits. In other words people have died or are going to die sooner because the province has not listed it for funding under its drug program for reasons that have not yet been fully explained.
“As far as Graham is concerned it has worked,” Tony said, about the benefits of his son’s Avastin treatment. The first MRI after the first treatment in June showed a reduction in the tumour-affected area of his brain. And in other respects his condition was “substantially better,” Dr. Del Maestro noted.
Graham’s condition improved so much he was able to go back to work for a couple of days a week this past spring and early summer. But then there were problems brought on by the side effects of one of the chemotherapy drugs he was taking with Avastin. He was taken off it for a couple of weeks in July. An MRI shortly after that showed the tumour had seized that brief opportunity to grow again.
Then Graham suffered a major setback in late July. Tony found him virtually unresponsive in bed in the morning after he had complained of a headache at work the day before. Tony called 911 and Graham was rushed to Western hospital. “The doctor told us, ‘be prepared, three or four hours, five at most.’ He was not expected to live,” Tony said.
Graham was administered large doses of two drugs that would either seal his fate or save his life. By the end of that day he was starting to show “signs of life.” And Saturday morning after a good night’s sleep he woke up and said, “’I want to go home.’”
“The neurosurgeon said he’d never seen anything like it, someone in that condition, nobody ever came back from it.”
His son’s prognosis is “not too good,” Tony said. But he’s not giving up. “Absolutely not. Graham is incredibly positive.” But the important thing is he needs more time to keep up the fight, and “that’s what Avastin gives him,” he said.
Tony noted Avastin has already been “listed” by Ontario for colorectal cancer treatment. He sees no reason why it shouldn’t be listed for brain cancer. That’s especially when MRIs quickly show if it’s effective for particular patients or not. If not the treatment would be stopped. That should take care of any cost-benefit issue the Ontario drug evaluators might have, he said.
That certainly made sense to me. One might even call it common sense.
It will be interesting to read the “transparency bulletin” when it’s published, for what it reveals, or not.
Originally published in The Sun Times in 2011.