A few questions with Halifax artist Élana Camille Saimovici
Why can’t it be you? The driving force behind success
SUCCESS = career + money ... or does it?
Should I stay or should I go? A look at graduate retention
A conversation with Canadian Armed Forces veteran and health ...
Generational value gaps shifting as individualist thinking warps view ...
Success: Two women. Two lives. One take.
Five questions, 10 answers: let's make prejudice, inequality history
Money. Happiness. Family. How do we define success?
Part III: The lawyer, the patient, and the advocate
Part 3 in an ongoing series
It started with a client, and once Ches Crosbie dug into it, it soon became clear to him there was a systemic problem at Eastern Health’s lab — one that ballooned into an epic scandal in Newfoundland and Labrador health care and politics.
Once the media took notice of the extent of the testing errors uncovered through the lawsuit, the clients kept coming.
“Sometimes class actions get a bad rap and sometimes they deserve to get a bad rap, but on the whole they are an extremely useful tool to vindicate the rights of individuals against large organizations, including corporations and governments, who otherwise would have no path to justice,” Crosbie said in an interview at his Confederation Building office, where he is now leader of the Opposition Progressive Conservatives.
What began as a class-action lawsuit eventually spawned a public inquiry once Eastern Health’s handling of disclosure to patients reached into the political world and the public clamoured to know who had known what and when, and what they had or had not done about it — whether it was Eastern Health officials or the provincial Department of Health.
Most often, a public inquiry sparks a class action, not the other way around, Crosbie noted.
“You could argue no class action, no inquiry,” he said.
It’s speculation at this point as to whether without the class action, the testing errors would have become public the way they did.
Crosbie does acknowledge former Liberal premier Roger Grimes for introducing the legislation allowing class actions in this province.
“I think we can say the taking of the class action exposed the problem much earlier than would have occurred than if it had just been left to chance,” Crosbie said.
Years later, the subject of breast cancer is deeply personal for Crosbie.
“I think we can say the taking of the class action exposed the problem much earlier than would have occurred than if it had just been left to chance." — Ches Crosbie
His wife was diagnosed late last year.
It was difficult news, but her prognosis is very good.
A newer scientific test, Oncotype DX, measures recurrence risk and helps to decide the course of treatment. It sees pathology samples tested in the United States.
It’s an example of Eastern Health’s awareness of emerging science and technology. By sending certain tests away to where the expertise is centred, it’s operating to a high standard.
In Crosbie’s wife’s case, the test determined that chemotherapy was not indicated, and radiation therapy and medication are the right course.
Crosbie is satisfied with how change has evolved at Eastern Health.
“I think from my view, the experts, the oncology people, as well as technicians, any contact I have had with them, they have been professional, competent and caring. I have no complaint about it,” he said.
“Cameron’s report has to be entitled to some deference in that. If it didn’t have an effect, then what the hell’s it all from?”
Justice Margaret Cameron’s job was to sort out why more than 400 breast cancer patients received the wrong results from hormone receptor testing — used to determine treatment options — from 1997 to 2005, as well as how the disclosure of the errors to patients went wrong.
The hormone receptor tests determined whether a drug known as Tamoxifen would have been beneficial to the patients, and at the time the drug had a success rate of something like 50 per cent of lowering the recurrence rate, Crosbie recalled.
Still it’s hard to prove causation. He didn’t have to — Eastern Health settled the case for $17.5 million.
“The vast majority, if not all of them, were more interested in exposing what had gone wrong and seeing it addressed in a lasting way than they were in any financial outcome,” Crosbie said of the patients.
“So, if the clients were satisfied by that, I am satisfied. It was, after all, done for them.”
Once his children were grown, Crosbie said, he turned to politics, because he felt “the way forward would lead us to the cliff’s edge.”
“My makeup is to rise to challenges and to rise to situations of injustice and try to make a remedy for it,” said Crosbie.
Could he conceive of another health-care fiasco on the scale of the events that led to the Cameron report?
“It’s almost like asking could Muskrat Falls (the provincial hydroelectric project that’s currently the subject of a public inquiry) happen again. You could put in institutional safeguards, but they are only going to be as good as the people who are actually there and are responsible for making those safeguards work.”
If the Cameron report and the scandal before it seems like a lifetime ago, Gerry Rogers might be the poster child for having lived a whole other life.
Rogers was the filmmaker behind the internationally award-winning 2000 film “My Left Breast,” which she made with her now wife, Peg Norman, chronicles Rogers’ personal experience with breast cancer.
And now Rogers has spent two terms in political office.
First elected in 2011, she announced earlier this year she would step down from the leadership of the NDP and not run in this year’s provincial election.
Rogers was diagnosed with breast cancer in 1999 and quickly learned there was no local activism surrounding the disease.
“What really interested me was policy around breast cancer, detection, prevention and treatment,” she said.
Living in Carbonear at the time, she was a patient participant in a provincewide teleconference between breast cancer patients organized by Memorial University researcher Jon Church, and she was astounded when she heard about this province’s mortality rates for breast cancer.
Looking back, it seems like there were red flags the system didn’t notice.
Rogers organized the first breast cancer retreat — now entering its 20th year — as patients from around the province had never gotten together in person before.
Breast cancer has been a force in Rogers’ life — she has since had another mastectomy. Several other immediate family members have had double mastectomies as well.
But she is comforted by the changes at Eastern Health since the Cameron Inquiry.
“I always talked about the lab technologists, the pathologists who are working so hard — they wanted to produce the best possible work they possibly could. They’re not bad people. And they were so underfunded and under-resourced then, so reputations were ruined, unjustifiably I believe,” Rogers said.
“And I think if I were to be diagnosed with breast cancer now, I would have no hesitation whatsoever to trust the work of the staff here or the pathologists. I think there are safety protocols and quality assurance protocols, and other processes are state of the art.”
She said it’s appropriate to send tests away when another location is more proficient in the technique or the tests are few in number due to this province’s small population.
But she had hoped Newfoundland and Labrador — in the wake of the Cameron Inquiry — would have established its own centre of excellence in breast pathology.
She expressed concern about whether or not local experts are getting ongoing education and chances to produce research.
A member of a committee connected with the implementation of Cameron’s recommendations until she entered politics, Rogers says she wasn’t pleased at the choice of memorial — the Graces monument outside the Health Sciences Centre in St. John’s.
“I hate it,” she said.
“When I was on that committee I pushed and pushed and pushed for something inspirational — not maudlin, not a public shaming memorial, but something that would inspire staff that we are providing the best care possible. There was so much shaming and false finger-pointing because of the confusion and the way government handled this. Who needs to walk by this? It is almost about shaming, and it is backwards looking rather than forward looking.”
Rogers said some of the problems with how Eastern Health disclosed the errors stemmed from basic attitudes about women.
“If this was men, they would have handled it differently, probably,” she said.
“All the misinformation floating around, the confusion, the fears. They didn’t want to frighten women. That’s where they would have treated this differently if it was men — because they wouldn’t have treated us as if we were children or if we would be hysterical or we would be too emotional. I remember saying, ‘Give us the real information. It is not going to frighten us. We are not children.’”
At the height of the breast cancer treatment testing errors, Peter Dawe would go to national meetings of the Canadian Cancer Society and the matter wouldn’t be brought up.
He was executive director of the provincial division at the time and was a loud advocate for patients, as were other members of his staff.
“And it wouldn’t even be mentioned. There wasn’t direct criticism, but it was also ignored,” he said.
Activism didn’t seem to be on the society’s radar, even though the scandal was grabbing national headlines, Dawe recalled.
“Locally, we legitimized the concern of patients who were speaking out. I think we helped that way,” he said.
“Because we were so mouthy, so out there and pushing for answers.
“Along the way, we ended up butting heads with the medical system and provincial government. That wasn’t seen as the Cancer Society way to do it.
“I was trying to engage the other provinces to say, ‘This is happening in Newfoundland and Labrador. What is happening with testing like this in your province?’ Nobody picked up on it.
“From a health policy, again, the way I saw the role of the Cancer Society — it might not have been shared nationally — was that we had a role in creating good public policy, whether prevention or treatment or research or whatever.”
The endless hours he and other staffers spent on that advocacy, as well as on the Daffodil House campaign and regular work duties, might have contributed to the toll on Dawe that in recent years developed into a health crisis of his own.
“I didn’t realize the effect it was having on my health,” he said. “Physical and neurological exertion really wears me down. I was never really good at realizing how much stress I was under.”
He has myalgic encephalomyelitis/chronic fatigue syndrome/ /fibromyalgia.
It’s a debilitating condition causing severe fatigue, and muscle and joint pain that saw him withdraw from consultancy work after he left the Cancer Society, as well as from work in the mental health field two years ago.
There are about a half million Canadians — about 2,000 in this province — suffering from the condition, Dawe said. Most are women, which he suspects has been a factor in the condition not being taken as seriously as it should have been for decades.
Dawe said that unless people are strong advocates for their own health, it’s not easy to navigate the system.
“You’ve got to make connections and ask the right questions and push for a level of service you wouldn’t have gotten otherwise,” he said.
“I honestly believe you are going to have a better outcome the more you know about the system and the more you push the system.”
The most compelling lesson for Dawe out of the Cameron Inquiry was the need to be alert for potential weaknesses in a large health-care system.
“But personally, for me, my biggest takeaway from all of this was we all are pretty naïve about systems like this — about the power and control these systems have over us and we don’t even realize when we are being abused. There is no way to tell. Those systems have integral checks and quality assurance, but they don’t work very well,” he said.
“And then atop of that were these very deliberate policies around communications that were ‘wait and see if it goes away.’”
While Dawe was advocating for patients, there was a story closer to home that never left him.
“The system has got to do better with ordinary people.” — Peter Dawe
It’s one involving his mother, who in the mid-1980s was found to have a lump in her breast and was sent to a surgeon for a needle biopsy. It was December and the surgeon couldn’t extract any fluid.
“He said to Mom, ‘Don’t worry about it.’”
A year later, her family doctor again felt the lump, which had grown.
She had a radical mastectomy and was dead within five years — years filled with agony.
And they couldn’t find a lawyer to take on the case.
Janet Dawe was just 54 when she died. Peter Dawe’s son was then an infant.
“She met my son on her deathbed,” he said.
“The system has got to do better with ordinary people.”
- CAMERON REPORT: Donna Howell’s family left feeling shortchanged, 10 years after breast cancer testing scandal
- CAMERON REPORT: Families, patients reflect on cancer screening scandal
- CAMERON REPORT: Elizabeth Finlayson remembered by her daughters
- SPECIAL REPORT: The breast cancer testing scandal that shocked Newfoundland and Labrador led to sweeping change