Remembering Julie Mason 
‘I think I was born with ‘Question Authority’ written across my forehead,’ Julie Mason once wrote.
(Photograph: Julie Oliver, Ottawa Citizen)
‘I think I was born with ‘Question Authority’ written across my forehead,’ Julie Mason once wrote.
(Photograph: Julie Oliver, Ottawa Citizen)
Julie Mason was a friend of Medicare and supporter of the Canadian Health Coalition.
For the past couple of years we had the pleasure of getting to know and work with Julie.
Julie helped us celebrate the 30th anniversary of the CHC last November and delivered the after dinner speech.
It was a passionate, political and principled address – reflecting the person that Julie was.
I remember sitting at the same table that night with Julie and her husband Don and sharing memories of visiting Tommy Douglas in the early 1980′s at the NDP office on Metcalf Street.
Like Tommy, Julie spoke from the heart about Medicare and didn’t mince words:
“As many of you know, I’m a cancer patient – I live with stage 4 metastatic ovarian cancer. Medicare keeps me alive…”
Julie used her investigative journalism skills to expose the flaws in the Shona Holmes story, the Ontario woman who claimed in a US TV ad campaign that delay’s in Canada’s health care system forced her to go to the U.S.
As Julie put it: “When Shona’s story was blasting all over the media, no one from the federal or provincial government stepped up to defend Medicare.
It’s what Tommy Douglas once referred to as ‘the subtle sabotage’. There’s no shortage of Medicare sabotage…”
Julie was a guardian of Medicare.
Read her speech from last November. Read a couple of her Ottawa Citizen columns. Remember Julie’s passion.
Rest in Peace sister.
– Michael McBane, National Coordinator, Canadian Health Coalition
Ottawa Citizen (October 17, 2010)
True to her words
‘She never lost sight about … what really mattered’
By Bruce Ward
House of Commons (October 19, 2010)
Tribute to Julie Mason by NDP House Leader Libby Davies
Ottawa Citizen (February 8, 2009)
The hip bone’s connected to the wallet
Three good reasons why for-profit clinics don’t work
By Julie Mason
Ottawa Citizen (July 12, 2009)
A reality check on a reality check
For years, Canadians have feared the American health care system; now Americans are being told to fear ours
By Julie Mason
Canadian Health Coalition (November 17, 2009)
Julie Mason speech to the Canadian Health Coalition’s 30th Anniversary Gala (YouTube Video)
The Ottawa Citizen (October 17, 2010)
Julie Mason: True to her words
‘She never lost sight about … what really mattered’
By Bruce Ward
Julie Mason took a position, a stance, when she was diagnosed with ovarian cancer in late 2006 — just as she did with the political and social issues that dominated her life.
As readers of her Sunday columns in the Citizen know, Mason was determined not to let the disease take control of her life. She chose to go public, often speaking to women’s groups about ovarian cancer as well as pushing for change in her columns.
Mason, who died Saturday morning in Toronto, never faltered in her lifelong advocacy for social justice and women’s rights, or in her determination to make the world a better place. She was 66.
“I think I was born with ‘Question Authority’ written across my forehead,” she wrote in one column.
As a woman who came of age in the mid-1960s, Mason fought for her place in the world. So it was no surprise that she would become, in her words, “a noisy and assertive cancer patient” who challenged doctors whenever she felt talked down to, ignored or misled.
“I hope to be loud and noisy and irritating until every physician’s office has a pamphlet in the waiting room that says, ‘Ask me about early symptoms of ovarian cancer,’ and every woman who has the symptoms gets to her doctor and gets checked out,” she once wrote.
Mason, who worked as a communications strategist for the federal NDP in the Broadbent era and beyond, was also active in local municipal politics. When Alex Munter ran for mayor in 2006, Mason signed on as communications director.
As Munter recalled, Mason made a habit of telling him what he needed to hear, and not what he wanted to hear.
“Most importantly, she was a friend and endless source of reality checks. Don’t get me wrong — Julie was a nurturing, loving person, but she also epitomized what you would want in a true friend: no-holds-barred honesty. I always knew she was in my corner, in part because she would bluntly tell me things that others would sugarcoat.” Mason’s “constructive crankiness concealed a sentimental idealism,” Munter said.
“She had high expectations of co-workers, of friends, of the world. She wanted to live in a just, caring society and devoted all of her energies to advancing that cause through many different vehicles — politics, the media, advocacy, community groups.” Munter valued Mason’s expertise as much as her idealism.
“She was also one of the sharpest communications minds I ever worked with. She could cut through all the blah, blah, blah and turn complicated policies into crisp, clear content. She always came at political issues through a simple filter: what does this mean to real people? Forget ideology, or buzzwords, or inside-baseball political chatter, why should a mom in the ‘burbs care about this? It was a rare and precious skill on a campaign, where people often get caught up in the game of it all. She never lost sight about what it really was all about, what really mattered.” Mason married Don McGregor in 1965. The couple raised two sons, Glen and Brian.
“One of the things she was proudest about was bringing the tools of modern political communications strategy to the New Democrats in the 1980s,” said Glen McGregor, the Citizen’s social media editor and an award-winning reporter.
“The NDP during the Broadbent era ran a campaign about ordinary Canadians. She kind of introduced that term, which until that point was not part of the political vocabulary. Now everybody uses it, every political party tries to make that claim.” He said Mason studied U.S. politics and campaign tactics, such as focus groups and direct mail, and adapted some of the strategies for use by the NDP.
“She was very skilful at it. The party did extremely well during that period.” McGregor said he admired his mother for succeeding in the male-dominated world of politics at a time when women were expected to stuff envelopes and answer the phones.
“The thing that always amazes me about my mom is that she was 21 when I was born. It was an era when for a woman to have a kid and then go off and have a career as a political strategist was unusual.
“I was always impressed that she was able to do that. It was the Mad Men era, mid-1960s, everybody knows what it was like from watching Don Draper. It was neat that she had the ambition to do that. And my father, that was one of the things he loved about her.” At the beginning of her career, he added, Mason worked with Oxfam. She contributed to the charity’s original, groundbreaking advertising campaigns. In the last few years, she was involved with the Children’s Bridge Foundation, which funds projects for orphans in the developing world.
“It was her way of bringing it full circle.” Mason also did some training as an English-as-a-second-language teacher, helping immigrant families learn the language.
“She found that incredibly rewarding,” said McGregor.
Joan Weinman first met Mason when both were working on the Munter campaign. The two later became partners in a communications company.
“The day I met her, she struck me as someone of such integrity, and so smart and so funny, that I wondered why it took me so long to meet her,” Weinman said. “We became very close, very quickly. She was one of these kinds of people that the more you know of her, the more you love her.” As business partners, the two were choosy about clients.
“We had one rule of thumb,” Weinman said. “We would only take clients that worked to make a positive difference in people’s lives. That to me kind of sums up Julie.” Mason “spent the vast majority of her life putting other people ahead of herself,” added Weinman. “She was a crusader for women’s rights, social justice, equality and fairness. We call her a crusty old broad and the reason we call her that is because that’s what she called herself.” On the TV show The West Wing, Mason did not identify with the character C.J. Craig, who handled the media on behalf of the president.
“Instead, she aligned herself with crusty old Leo, the chief of staff, because he was smart and knew strategically how to call the shots. He was rarely wrong, he was a man of high integrity, and he said what was on his mind. And that’s exactly who Julie is.”
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‘It’s patience, not courage, that gets us through’
Julie Mason considered herself a traveller on the journey of wayward cells. With spirit and grace, she shared dispatches with Citizen readers along the way.
On learning she had cancer
It was a week before Christmas. While I waited in a crowded hospital lounge to see the doctor, I made a list of all the things I needed to do that afternoon to be ready for the holidays. An hour later I was back in the lounge, so shell-shocked I couldn’t remember how to get to the parking lot. I had just become one of the 2,300 women in Canada diagnosed last year with ovarian cancer. It is the most lethal of all gynecologic cancers, fifth on the list for number of women’s deaths in Canada.
On searching for a better metaphor
I’ve never been a fan of the attack metaphors — the war on cancer, fighting cancer, conquering cancer, in a tough battle with cancer, etc. It leads to “beating” or “winning,” which obviously leads to “losing.” If 62 per cent of those who take on cancer beat it, what are we to think of the other 38 per cent — that we are “losers,” that cancer “beat” us?
I find it baffling that anyone would want to see and talk to cancer as if it is a person. Cancer is a disease. We don’t go around telling heart attacks that we hate them or seeing multiple sclerosis as a nasty old guy. Cancer is increasingly being treated as a chronic disease, with treatments prolonging life for months and years at a time while allowing those with the disease to live a good quality of life. So if I’m going to have to live with cancer for a while, it doesn’t make a lot of sense to walk around in a huff.
On cancer celebrities
As a fellow traveller on the journey of wayward cells, I watch cancer celebrities with a mix of awe and despair. The problem with their unstoppable optimism and heroic commitment is that media coverage and public response suggest their way is the right and only way.
In my experience, bravery and battles don’t have much to do with having cancer. The old-fashioned word “patient” seems exactly right. Once we’ve done everything to get the right medical advice and treatment, we need patience to allow our body’s natural inclination to heal to be aided by all that science can offer. It’s patience, not courage, that gets us through unpleasant treatments, uncomfortable tests, discouraging outcomes and dark nights.
It’s not bravery that makes us put out an arm to accept a plastic tube of poisons, or lie under a radiation beam or a surgeon’s scalpel. It’s what we do because there is no other choice. As Mao might say, these are the small steps on our journey of a thousand miles.
On fatigue, ‘cancer’s F word’
My healthy grandma sometimes said she was “bone weary,” and that’s a good description of the fatigue from cancer and other chronic diseases. It’s not like normal fatigue. It’s a pervasive, life-changing exhaustion that doesn’t respond to rest. Walking the puppies around the block feels like a triathlon; grocery shopping is an endurance contest; making a meal requires several rest breaks; even simple things like reading a book or talking on the phone are tiring. Other symptoms include weakness, overall lack of energy, leg pain, shortness of breath, as well as irritability, and trouble thinking, concentrating and making decisions. One of the most difficult aspects of fatigue is its invisibility.
… and on recurrence, ‘the R word everyone fears’
We learn that once cancer appears, it will probably be physically or psychologically with us for life.
On the ethics of isotopes
For someone living with cancer, the shortage of medical isotopes raises many difficult and compelling moral questions.
What are we to think of the moral stance of successive governments that ignored the rapid decline of a 50-year-old reactor that provides almost 40 per cent of the world’s supply of medical isotopes?
How do they justify turning their backs on the problem after the previous shutdown of the facility only 18 months ago?
What are the moral implications for doctors and hospitals of having to ration tests for those with cancer or heart disease?
Who makes the decisions and on what basis are the decisions made? Who gets the test?
Does it go to the young executive with possible heart problems or the retiree who needs to know if cancer has spread to the bones?
Where will the small supply of isotopes go?
Will they serve the big hospitals with money and resources to find and purchase them? Will they be allocated on the basis of need or on the basis of financial capacity or political clout?
On the rhythm of cancer
The scan dance is one of the necessary rituals known to all of us who live with cancer.
For me, the dance is a stately forward-and-back through the CT machine, preceded and followed by short bursts of high anxiety.
First comes a slow crescendo of vague anxiety that begins a few weeks before the test.
This peaks the day before when it may be necessary to slurp disgusting liquids, stop using deodorants or avoid having sex.
By test day, you’ve usually settled into a fatalistic let’s-get-it-over-with. This numbness makes it possible to propel yourself into the scan suite or the blood lab.
… and waiting for test results
It’s a time when the whole strangeness of serious illness is most keenly felt. You may feel perfectly well and look the picture of health. You may have important plans for work or a long-awaited vacation.
You may be madly in love with someone new or enjoying a first grandchild. You may be convinced the treatment has worked or that your body has done its job of healing you.
But nibbling away in the background is the knowledge that the tools of science can tell a very different story. Invisible and unfelt, something may be happening inside your blood, organs or bones that will change the trajectory of your life. A CT scan or MRI is not a painful or unpleasant test, unless you are nervous about confined spaces. But they are horribly depersonalizing. In spite of my best efforts, I always cry, which makes me feel foolish.
Finally, here’s Mason on the best health advice
My mom was right: Eat your veggies; enjoy a piece of lemon pie now and then; get off your butt and go for a walk because you like it, not because it will make you thinner; and unless you’re super skinny, quit worrying about your weight.
Ottawa Citizen (February 8, 2009)
The hip bone’s connected to the wallet
Three good reasons why for-profit clinics don’t work
By Julie Mason
Last summer, the Man of the House became the proud owner of a shiny new titanium hip. He hobbled around for a few months while he waited for his surgery. Wait time in Ontario is listed as 174 days, and he probably was in the queue about that long. He had a top-notch surgeon, great care in a good hospital and a steady recovery. While his golf game didn’t improve, his quality of life sure did.
Just as important, he didn’t have to pull out his credit card, mortgage the homestead or sell our firstborn to get it.
So the Man of the House doesn’t have much sympathy for Dr. Brian Day. The good doctor has just launched a constitutional challenge to our public health-care system. Dr. Day, the former president of the Canadian Medical Association, is owner of the Cambie Surgery Centre — a provider of for-profit surgical services in British Columbia — and spokesman for the Canadian Independent Medical Clinics Association, a group of private clinic operators who brought the legal challenge in January.
In what they are calling a “Charter of Rights issue,” the private clinics in British Columbia are basing their case on the 2005 Supreme Court of Canada decision in favour of Dr. Jacques Chaoulli. A fierce advocate of for-profit health care, Dr. Chaoulli, together with a patient who had to wait a year for a hip replacement, challenged the Quebec government to allow patients to buy insurance for medically necessary services from a private clinic if access to public services was seen as too slow.
The Quebec government’s response was Bill 33, which took steps to improve access in the public system while allowing private medical insurance to cover medically necessary procedures in only three areas: total hip and knee replacement and cataract surgery.
Medicare advocates worried about the Chaoulli case opening the door to more for-profit clinics and private medical insurance across the country. There are rumblings from Alberta, but it’s no surprise that the latest challenge came from British Columbia where there are at least 25 surgical clinics selling medically necessary services.
The Ontario Health Coalition, a pro-Medicare group based in Toronto, released a compelling case against private medical services last fall. In a comprehensive report on for-profit health services, the coalition took on the main arguments made by the private clinics:
1. Private clinics mean shorter wait times.
The theory is that when wealthy patients pay for private services, it shortens wait times for the rest of us. Not so, says the coalition. In fact, wait times are highest in the areas with most privatization. Private clinics poach scarce doctors and highly trained healthcare workers from the public system, which results in longer waits for those of us in the public queue.
2. Private clinics improve access to health care.
Most of us can’t afford for-profit clinics. Physicians’ clinics routinely charge up to $3,000 a year for “elite” services, and the clinics can charge up to $18,000 for a procedure like a knee replacement compared to the public cost of $8,000 in a public hospital. In addition, private clinics usually set up in urban areas where more people can afford their services, leaving rural and poor communities under-served.
3. Private clinics save money for the public system.
To survive financially, many for-profit clinics are finding ways to bill the public system, patients and their insurers for medically necessary services. Procedures in for-profit facilities cost more than the same procedures done in public hospitals. A new hip for the Man of the House is estimated to cost up to $21,000 in a private clinic compared to the public cost of about $10,000. In addition, private clinics want patients with no complications — a practice called “cream skimming” — that leaves the difficult, risky (that is, expensive) patients to the public system and treats only the easiest and highest-profit patients.
The coalition’s report details many more compelling economic reasons why private clinics and for-profit services don’t work. Still, this public policy issue just won’t die, no matter how many times we drive a stake through its heart. Using phrases like “consumerdriven” and “patient choice,” the Dr. Days of the world will keep dangling for-profit services as the cure for our Medicare ills.
But there’s something more than economics at stake. Canadians built a first-class public health system — and believe in it — because most of us find it repellent to allow anyone to buy their way to the head of line for health care. In spite of its many flaws and frustrating delays, our public health system is still the best way to make sure all of us get fair access to quality care.
Ottawa Citizen (July 12, 2009)
A reality check on a reality check
For years, Canadians have feared the American health care system; now Americans are being told to fear ours
By Julie Mason
I’m a secret CNN fan. I just can’t get enough of those talking heads with their gleaming teeth, wet-look lipstick and perfect coiffures. Even at 4 a.m., some gorgeous thing with flawless makeup (men and women) will be gushing about important affairs of state like Michael Jackson or that philandering governor from South Carolina.
Every once in a while, CNN will notice there’s a country north of the 49th parallel that has some weird little customs, like parliamentary democracy or gun control. They then venture forth to do in-depth analysis of our quaint habits for the benefit of the enlightened viewers of, let’s say, Kentucky.
Kentucky is to blame for the latest CNN investigation of Canada — a “Reality Check” on Canada’s health care. It seems the state — known for fried chicken and racehorses — is also home to Senator Mitch McConnell, a high-ranking Republican of impeccable conservative credentials. Senator McConnell does not like President Barack Obama’s plan to reform health care, and he’s decided to use Canada as a weapon to help him fight the battle.
As CNN reported, McConnell recently made a speech to the Senate referring to the “bureaucrats who run Canada’s health care system” and using the Kingston General Hospital as an example of the horror of Canada’s health care. KGH supposedly had waits of 340 days for knee replacement and 196 days for hip replacement. McConnell also fussed that Ontario’s wait time for breast cancer surgery is three months. CNN did interview Dr. David Zelt, KGH’s chief of staff, who pointed out the wait times are actually 91 days for hip replacement, 109 days for knees, and that these aren’t the average wait times, but the time that nine out of 10 people have had the procedure. Many have them done much faster. For breast cancer surgery, the wait time at KGH is 23 days, across Ontario it’s 34 days.
Both CNN and McConnell made a big deal out of Shona Holmes, an Ontario woman who claims she was forced by Ontario’s health system to go to the United States for life-saving surgery for a brain tumour. She claims that in 2005 delays in access to treatment at home made it necessary to go to the Mayo Clinic in Arizona and pay $97,000 for her care.
In 2007, Holmes was part of a court case brought by the Canadian Constitution Foundation against the government of Ontario. The case challenges Ontario’s “government-run monopolistic” health system that prohibits the sale of private health care and private health insurance for essential health services. It is still before the courts.
Holmes has become the darling of conservatives and the stop-public-health-care movement in the United States. She’s testified before Congress, been on Fox TV as well as CNN, and her story is retold on hundreds of right wing blogs. She’s now doing a nasty TV ad for Patients United Now, a Republican-led group opposed to Obama’s reforms. You can see the ad at www.patientsunitednow.com. The group is spending almost $2 million on it to target politicians in Washington.
For a person living with cancer, the idea that someone’s care could be unreasonably delayed is truly scary. It also doesn’t reflect the experience I’ve had or the experiences that have been shared with me by so many other patients. Even CNN interviewed Doug Wright, a more typical patient in Toronto who is receiving very speedy treatment for his cancer.
Still, I found Holmes tale both compelling and troubling. So I decided to check a little further. On the Mayo Clinic’s website, Shona Holmes is a success story. But it’s somewhat different story than all the headlines might have implied. Holmes’ “brain tumour” was actually a Rathke’s Cleft Cyst on her pituitary gland. To quote an American source, the John Wayne Cancer Center, “Rathke’s Cleft Cysts are not true tumors or neoplasms; instead they are benign cysts.”
There’s no doubt Holmes had a problem that needed treatment, and she was given appointments with the appropriate specialists in Ontario. She chose not to wait the few months to see them. But it’s a far cry from the life-or-death picture portrayed by Holmes on the TV ads or by McConnell in his attacks.
In Senator McConnell’s home state of Kentucky, one out of three people under age 65 do not have any health insurance. They don’t have to worry about wait times for hip or knee replacement or cancer surgery — they can’t get care. The media household income in Kentucky is $37,186 — not quite enough for the $97,000 bill at the Mayo Clinic. CNN didn’t mention that in its “Reality Check.”
As the debate on health care reform heats up the United States, it seems certain that Canada’s public health care system will be used, or more accurately misused, in the battle for hearts and minds. For years, Canadians have feared the American health care system; now Americans are being told to fear ours.
Canadian Health Coalition (November 17, 2009)
Julie Mason speech to the Canadian Health Coalition’s 30th Anniversary Gala
I’m delighted to join in the celebration of 30 years of the CHC. And I want to thank all of you in this room – and the organizations you represent – for the many battles you have fought and won to keep Tommy’s vision alive and well.
Today, Tommy’s vision is providing quality health care for all Canadians.
And as Nik Nanos research shows, Canadians love Medicare. 90% of us support it. I can’t think of any other issue or icon like that across Canada – except maybe Tim Hortons.
That’s why we can talk about Medicare as more than a health care system; it’s a deeply entrenched national value.
You know, when we get involved in protecting health care, we often talk about single payer or universal access or health policy or the Canada Health Act – and all that’s important –but we forget what Medicare is really all about.
It’s about saving lives.
As many of you know, I’m a cancer patient – I live with stage 4 metastatic ovarian cancer. Medicare keeps me alive.
If we didn’t have medicare in Canada, I would not be able to afford my cancer treatment. It’s that simple
If I lived in the United States, there’s a good chance I’d be one of the 45 million people who have no health insurance.
Or maybe I’d be one of the hundreds of millions whose insurance wouldn’t cover the treatment I need, or who lost my insurance when I changed jobs or was no longer well enough to work full time.
In the United States, one person dies every 12 minutes because they don’t have health insurance – that’s the figure from a recent study by the Harvard Medical School.
And it’s not just the poor and vulnerable. A friend living with cancer in New York phoned. She’s married to a doctor, and they’re lucky enough to have good health insurance. We both worried about going through chemo. My worry was how my body would handle it. Her worry was if their insurance would cover the $16,000 bill for each treatment.
Those are the stakes when we talk about Medicare.
In this 25th anniversary year of the Canada Health Act, our federal government ought to crowing from the rooftops about the success and achievements of our public health care system.
As debate over U. S. health care reform rages, Canada should be bragging about the benefits of Medicare for families and business and our communities and country.
Instead, what we get from our federal government is a resounding silence.
Medicare has no champions in the federal government, and few at the provincial or territorial level.
Maybe they aren’t talking because of the complete failure by the federal government to act on private health clinics. It’s a shocking abandonment of the requirements of the Canada Health Act and a problem you deal with every day.
Canadians certainly got the message about private clinics in the early stage of the H1N1 vaccine. While high risk folks lined up for hours, those people who could pay the annual memberships of $3500 strolled into their private clinics for the shot.
It’s called queue jumping – plain and simple. Canadians understand this is wrong and they hate it. It violates everything we believe about the principles of health care.
But our Prime Minister said nothing.
He also said nothing about the latest publication from our federal government – Discover Canada – a guide for citizenship – was released this week. It’s supposed to introduce newcomers to our country and way of life.
In the 65 pages of information, which includes a comparison between Canadian and American football, there is only one short sentence about Canada’s greatest achievement – our universal health care.
It’s in a paragraph about “social assistance” programs, “The Canada Health Act ensures common elements and a basic standard of coverage.”
From my work as an ESL teacher, I can assure you that newcomers fully appreciate Medicare. The first thing they want is their health card – and many will get health care for the first time in their lives.
When Medicare was used as a whipping boy by the right in the United States, our Prime Minister said not one word to defend it. Ordinary Canadians got on the Internet and visited the States to try and set the record straight.
But Stephen Harper stayed silent.
Let’s look at the case of Shona Holmes, the Ontario woman who claimed delays in the health care system forced her to go to the United States for life-saving surgery for a brain tumour. Holmes presented her scary scenario in a $2 million American TV campaign opposing health care reform, and she was widely quoted by American politicians and media.
As a cancer patient, I thought Shona’s story sounded fishy. In the three years since my diagnosis, I’d always been treated swiftly.
It only took a few minutes of searching on the Internet to discover that Shona didn’t have a terrible cancer destroying her brain, but rather something called a Rathke’s Cleft Cyst – a benign tumour that certainly would need treatment, but hardly the life-or-death choice she presented.
Her Ontario doctors offered her treatment in an appropriate and timely fashion, but Shona didn’t want to wait a so she chose to pay $97,000 to the Mayo clinic in the U.S. – and then she asked the provincial government to pay it back.
When Shona’s story was blasting all over the media, no one from the federal or provincial government stepped up to defend Medicare.
It’s what Tommy Douglas once referred to as “ the subtle sabotage.”
There’s no shortage of Medicare sabotage – the Chaoulli case and its imitators; the Canadian Medical Association pushing for privatization under the guise of the European model; membership fees for private clinics; extra billing; user fees – on and on it goes.
There are also insidious ways to create two-tier health care.
The conventional treatment for most cancers is still surgery, chemo and radiation. These treatments are fully covered by our health plans.
But a new class of molecular drugs is improving outcomes for many cancers. They’re not necessarily cures but they can extend quality life for several months or even years.
Just to declare my vested interest, I’ve been taking one of them for almost a year as part of a clinical trial.
But there are two problems– they are hugely expensive – the average cost is $65,000 a year – and they are funded through a dog’s breakfast of different provincial government rules.
Robert Anderson is an Ontario retiree living on $29,000 a year. He was treated for colorectal cancer with one of these drugs, Avastin, which costs up to $2,000 for a cycle of treatment, a cost covered by the Ontario government.
After several treatments, Mr. Anderson was doing well – his tumours were shrinking or stable – and that’s progress in advanced cancer.
Then his doctor told him that he was cut off. He had reached the arbitrary limit of 16-cycles of treatment limit imposed by the Ontario government. Even though his doctors wanted him to continue on it, the bureaucrats at the Ministry told him his Avastin treatment was no longer “cost-effective.”
I want you to think for a minute about what that must have meant to Robert Anderson and to the many other patients who got the same news. It’s not the same as hearing from your doctor that the drug isn’t working.
It’s some nameless faceless bureaucrat telling you that you can have the drug if you can pay for it, but if you can’t pay – and Mr. Anderson couldn’t – then you’re out of luck.
Despite appeals to his MP, the Minister of Health, and even Ontario’s Ombudsman who took up his case, Mr. Anderson didn’t get his drug. Other patients mortgaged their homes or used up their savings to pay for it.
The then-minister of health David Caplan kept telling media that there was “research” to support the government’s position. In fact, there was absolutely no science to back up the decision. The volumes of research said the drug should be taken until the disease progresses – which can happen before or long after 16 cycles of treatment.
But the bean-counters in the Ontario government didn’t care about medical efficacy; the issue was cost-effectiveness.
For patients across the country, it’s a different story. In some provinces Avastin is fully funded for as long as it benefits the patient; in other provinces, patients can’t get it at all. In every case, it’s a bureaucrat’s decision, not a medical one.
(It pains me to say this, but don’t tell Sarah Palin. It will just be fodder for her Death Panel rants.)
Tommy Douglas was no novice when it came to understanding the complexities of federal-provincial relationships – but even he wouldn’t have expected to see patients on one side of a provincial border get one kind of care –with another kind for those the other side
And I don’t believe that Tommy ever thought that Medicare would mean that government bureaucrats dictated that patients who could afford to buy the drug could get it, while those who couldn’t were cut off.
And it’s not just cancer patients and it’s not just new drugs – there are far too many Canadians struggling to pay drug bills for medicine they badly need but can’t afford.
This is two-tier medicine sneaking in the back door, but it threatens lives and health just as much as extra-billing and user fees and private clinics.
You know, Tommy’s inspiration and determination came from his experience as an ill child. That’s why he always could see things from the patient’s side. He worked for a system guided by compassion, not cost-effectiveness, and driven by medical need, not bureaucratic bean counting.
We desperately need to remember Tommy’s vision and passion.
There is so much that we can and must do to protect and expand his dream. He warned us this would be the hardest part.
That’s why we will continue to need the Canadian Health Coalition. Much as I’d like to see a time when we don’t need your efforts, I don’t think it’s soon – there’s too much to be done.
The Coalition can’t do it alone.
We need committed politicians in Ottawa and in the provinces and territories, politicians who see Medicare as today’s battle to be won, not something boring and old and tired.
We need the people who have chosen to work in health care at every level speak out to protect medicare, instead of trying to sneak privatization in as a European model.
We need the voices of patients, not just providers, on what must be done.
We need loud and fierce advocates for Medicare – like all of you in this room.
The one thing we already have is the support of almost every Canadian in every part of the country.
So happy anniversary CHC. Tonight is for celebration, for taking pride in what you’ve accomplished. Tomorrow, there’s lot’s of work to do.
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Watch Julie’s Speech on YouTube
