PRAYING FOR A CURE: A higher percentage of people from impoverished neighbourhoods get, and die of, cancer than those in richer neighbourhoods. How do we address access to care, disparity and social justice?
Photos by JOHN RENNISON and GARY YOKOYAMA, The Hamilton Spectator.
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By STEVE BUIST
Ask any cancer survivor and they can recall in vivid detail the day they heard the dreaded words “You’ve got cancer.”
It’s been 42 years since U.S. president Richard Nixon launched the so-called war on cancer, and yet four decades later, with a cure as elusive as ever, cancer still scares us to the core.
Is it the perverse lottery aspect of getting cancer that scares us most? The idea that you can be living your life and then — without warning, without a sign — a switch gets flipped somewhere inside your body and this ticking time bomb is lit?
Even when the link between cause and effect is clear and irrefutable, there’s still a randomness to getting cancer. We all know there’s a strong connection between smoking and cancer yet three out of four regular smokers will still somehow manage to escape lung cancer.
Or is it cancer’s lethality that scares us most?
We know there’s a randomness associated with that, too. Some people beat it, others die from it.
But what if dying from cancer isn’t as random as we believe?
What if your ability to survive cancer has something to do with the size of your paycheque or the amount of education you’ve had?
That’s what the findings of The Spectator’s exhaustive new cancer investigation strongly suggest.
Ten years of data broken down to the neighbourhood level show that poorer people in Hamilton, on average, are dying of cancer at significantly higher rates than richer people. One neighbourhood in the inner city core, for example, has a cancer death rate that’s four times higher than a neighbourhood in Ancaster, the city’s wealthiest suburb.
The question is why? Why are poorer people dying of cancer more frequently than richer people?
The reasons are enough to shake one’s faith in this country’s beloved universal health care system, long presumed to be the great equalizer that bridges the gap between the haves and the have-nots.
Our comprehensive analysis shows significant disparities when it comes to access and utilization of basic health services such as cancer screening programs and family physicians.
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What’s disturbing is that those disparities often play out along social and economic lines.
When it comes to cancer screening programs for breast, cervical and colorectal cancer, people in Hamilton’s poorer inner-city neighbourhoods are being screened at much lower rates than people in the richer suburbs of Ancaster, Flamborough, Dundas, Glanbrook and Stoney Creek.
In some cases, the screening rates are nearly three times greater in the wealthiest neighbourhoods compared to the poorest ones.
An exclusive Spectator survey also shows that people in the inner-city core are three times more likely not to have a family physician and twice as likely to use walk-in clinics as their main source of health care than people in the western suburbs of Ancaster, Dundas and Flamborough.
The investigation also shows that frighteningly high rates of smoking in Hamilton’s inner city play a major role in the high cancer death rates that affect the city’s poor.
Let’s start with cancer screening programs and the example of one specific inner-city neighbourhood, the chunk of downtown Hamilton between James, King, Wellington and Cannon streets.
Nearly half of all adults and almost 70 per cent of children there lived in poverty, according to the 2006 census — the highest rates of poverty in the entire city.
That area also happens to have the highest cancer mortality rate in Hamilton, four times higher than an Ancaster neighbourhood that has the lowest death rate.
Now look at the cancer screening rates for that same inner-city neighbourhood:
Just 29 per cent of eligible women were screened for breast cancer in 2009, the lowest proportion in Hamilton. By comparison, the highest rate was one Glanbrook neighbourhood where 75 per cent of eligible women were screened.
Just 21 per cent of eligible men were screened for colorectal cancer, and again, that was Hamilton’s lowest rate. In the best neighbourhood — again in Glanbrook — the rate was 55 per cent.
When it comes to screening for cervical cancer, it’s the same story. Only 34 per cent of eligible women were screened, compared to 78 per cent in one Flamborough neighbourhood.
Maybe it’s just a coincidence that the neighbourhood with the highest rate of poverty and highest rate of cancer deaths also has the worst rates of screening for three common types of cancer.
Or maybe it’s not a coincidence at all.
Pull the camera back a little further and the same picture keeps coming into focus.
The Spectator’s investigation shows the cancer death rate in the inner-city between Queen Street and Parkdale Avenue from Main Street to the waterfront was 90 per cent higher than the death rate in Ancaster, the city’s wealthiest suburb.
At the same time, the rates of cancer screening across the board in the inner-city are one-third lower than the rates in Ancaster.
In the core, 47 per cent of eligible women were screened for cervical cancer in 2009. In Ancaster, the rate was 68 per cent.
In every case, it’s the same story. Screening rates improve as you move from areas of low income to areas of higher income.
When it comes to breast cancer screening, 45 per cent of eligible women in the inner city were screened. In Ancaster, the rate was 67 per cent.
If you ranked amalgamated Hamilton’s 135 neighbourhoods from top to bottom for breast cancer screening, the bottom 32 neighbourhoods with the lowest rates are all found in the lower part of the former City of Hamilton.
Ontario’s target for breast cancer screening is 70 per cent of women ages 50 and older.
Only three of Hamilton’s 135 neighbourhoods have attained that level, according to the data provided to The Spectator by Cancer Care Ontario.
It’s taken over 15 years to even get that close to the target, said Dr. Bill Evans, recently retired head of the Juravinski Cancer Centre.
“Why is that?” Evans asks, then answers. “Well, we keep doing the same thing over and over again.
“We promote it in Chatelaine magazine,” he said, speaking about breast cancer screening programs. “Guess what? The folks down in north Hamilton aren’t reading Chatelaine.”
The disparities in screening rates are another sign of the strong connection between health outcomes and social factors, Evans noted.
“It goes back to an awareness of what are the healthy behaviours, including going for screening, having your Pap tests, having your colorectal screening and breast screening,” Evans said. “All of those things are partly determined by your level of knowledge and understanding.
“If you’re in less well-off circumstances, you might not know those things or you might not know how to find them or you can’t afford to get to them,” he added.
It’s important to note screening programs don’t change the incidence of cancer.
But they should ultimately improve the outcomes for those who are screened and found to have cancer.
“As you keep going in the breast screening program, you expect that you’re going to pick up smaller and smaller cancers,” said Carol Rand, director of systemic treatment and regional cancer programs at Juravinski. “That’s the definition of being a good screening program.
“You’re not a good screening program if you’re just picking up great big cancers,” she said. “People are already well advanced at that point.”
Out of treatment options and with time — and hope — evaporating, Steve Rudaniecki signed up in late spring for the medical equivalent of a Hail Mary pass.
For 10 years, he’s been living with stage IV chronic lymphocytic leukemia. After exhausting all available chemotherapy, the 61-year-old North End resident was told he was down to his last few months.
There was, however, a new clinical trial recruiting patients at Juravinski. At the urging of his wife Susi, he agreed to sign up, even though he was told that death was one of the potential side-effects.
“We’ve talked about it a lot — do you want to throw in the towel?” Rudaniecki said. “Then after you’ve had a good night’s sleep or a couple of days of arguing and crying, you decide let’s go try it again.”
It’s a wonder he hasn’t given up already. The past 10 years living on cancer’s death row haven’t been easy for Rudaniecki.
He’d already had a minor heart attack — that’s how they discovered his advanced case of leukemia back in 2003.
A year ago, he had open heart surgery to replace a faulty valve. Two years ago, he had his spleen removed. He’s had two other stints in the hospital for pneumonia.
Some of his chemotherapy treatments reduce the amount of calcium in his bones and last year, he broke his back bending over to pick up a hose.
It’s also caused several of his teeth to snap off at the roots. He can’t get those fixed until he finishes with the clinical trial.
“I can wait,” he said. “I can be a redneck and have one tooth here and one tooth there.
“I had a sandwich the other day, just eating bread and ‘click.’ Everybody in the room went ‘What the hell is that?’ and I spit out a tooth.”
And if that’s not enough, Susi suffered a heart attack two years ago and underwent open heart surgery herself.
“She died twice on the operating table and they brought her back,” Rudaniecki said.
“We’re hard to get rid of.”
He’s certainly hard to get off Caroline Street North. Much of Rudaniecki’s life has been spent in the same house on the small block that juts up from Barton Street near the old Rheem factory.
Nobody knows why Rudaniecki developed cancer, a point that even he freely acknowledges.
Pinpointing the exact cause of one specific case of cancer can be very difficult.
For one thing, there are over 200 types of cancer and there are many different sparks that get them started.
Genetics play a role, as does diet and certain behaviours, such as smoking.
The physical environment around us — the chemicals our bodies absorb from the air, water and what we eat — also plays a role in cancer but linking a specific environmental factor to one person’s cancer is particularly tricky.
But still, Rudaniecki does have his suspicions. He might be right, he might be wrong.
His house is almost directly across the street from the notorious environmental hot spot once known as Currie Products, a roofing tar manufacturer that operated on the site until 1979.
The property was subsequently covered over with earth and turned into Central Park. But there are still lingering concerns about the toxic soup of contaminants buried underneath, and the city once again started poking through the soil last month at the request of Ontario’s environment ministry.
Rudaniecki said tar leaks were common when the company was in business and he remembers waking up one morning to a river of tar running down the street from one curb to the other.
Benzene is one of the main components of tar and it’s a known carcinogen linked to an increased risk of chronic lymphocytic leukemia.
“We had the fumes from there constantly,” said Rudaniecki. “We had a garden in the back, like everyone along here, and we ate the vegetables out of the garden.”
His mother, he said, had a breast removed because of cancer and she also had a brain tumour. His stepfather died from a combination of lung and brain cancer.
Rudaniecki says there have also been cases of cancer in the three houses next to his.
He adds it up in his head — seven people in four houses who got cancer.
“Coincidence? I don’t know,” he said.
“But seven people and four houses in a row?”
Shawn Forbes is a colorectal surgeon specializing in cancer at the Juravinski centre.
Originally from Thunder Bay, Forbes came to Hamilton to attend McMaster’s medical school then decided to stick around.
He has no shortage of work here, that’s for sure. Between 2000 and 2009, about 3,250 people in Hamilton were diagnosed with colorectal cancer, and more than 1,400 people died of the disease.
The Spectator’s landmark cancer analysis shows there’s a notable income gradient in colorectal cancer mortality rates across Hamilton.
The death rate from colorectal cancer in Hamilton’s east end between Parkdale Avenue and the Stoney Creek border was about 80 per cent higher than the colorectal death rate in Flamborough.
The numbers are sobering, Forbes said.
“The way our health care system is set up is a universal system and everybody should have equal access,” said Forbes. “But these numbers would suggest otherwise.
“Unfortunately, there is no one individual marker or test or indicator of socioeconomic status that encompasses the entire problem,” he added. “If only there was a single marker that could say, OK, this is a population that is at risk.”
Screening rates for colorectal cancer lag behind those for breast and cervical cancer, and again, there’s a significant difference across income levels.
There’s also a notable gender difference — women take advantage of colorectal cancer screening more than men.
In one inner-city neighbourhood, just one in five eligible men were screened in 2009.
The good news is that colorectal screening rates through the use of a fecal occult blood test rose dramatically in the amalgamated city of Hamilton between 2005 and 2011.
The bad news is that even with the increase, just 30 per cent of Hamilton’s eligible population completed the test.
It’s important, Forbes said, to remember the fundamental reasons for cancer screening programs such as FOBTs and colonoscopies.
“We screen because a disease is common,” he said. In the case of colorectal cancer, it’s the third most common type of cancer in men and women in Hamilton.
“But we also screen for colon cancer and a number of other cancers because we can modify the outcome and that’s the big deal,” he said.
“If screening didn’t affect the outcome, then we wouldn’t screen. But we know that if we catch colon cancer early, we can modify the outcome and improve survival rates.”
When colorectal cancer is diagnosed at stage I, the five-year survival rate is 93 per cent, according to the American Cancer Society.
But stage IV colorectal cancer? The five-year survival rate is less than 10 per cent.
“We know that stage is the biggest predictor of mortality,” said Forbes.
One of the questions he’s been helping research recently is whether or not there are differences in tumour stages based on a patient’s socioeconomic status.
“If there are more advanced-stage tumours coming out of the core or those with lower socioeconomic status, then it has something to do with diagnosis,” said Forbes. “Are these people not getting screened as aggressively as people of greater wealth?”
One of the barriers to colorectal screening is the stigma that comes attached with the disease. For some people, it’s a squeamish and uncomfortable topic they’d rather avoid.
“Even when they come to me — and this is all I do, this all I talk about — you can see they’re embarrassed,” said Forbes.
“There’s nothing embarrassing about it. This is your life, this is your health we’re talking about.
“We’re here to help,” he added. “There’s a reason we’re doing this.”
The next question is why are screening rates for breast, cervical and colorectal cancer so much lower in the poorer parts of Hamilton.
Cost isn’t a factor. All three screening programs are covered by OHIP.
The barrier is even earlier in the process.
You have to know you need the tests in the first place, then you might need someone to send you for the tests and then you have to get yourself there.
And that’s where the system could be breaking down, according to the results of an exclusive telephone survey conducted by The Spectator.
The poll was designed to find out how and where people in Hamilton obtain basic health care.
The telephone poll of 3,900 Hamilton households shows the rate of people reporting they don’t have a family doctor is twice as high in the lower city compared to Ancaster, Dundas, Flamborough and Westdale.
In postal codes beginning with L8L, which covers the urban core between James to Ottawa streets from Main Street to the waterfront, nearly 10 per cent of respondents reported they didn’t have a family doctor. By contrast, just 1 per cent of respondents living in the L8T postal codes on the east Mountain reported having no family physician.
The Spectator phone survey was conducted in July and its margin of error is approximately plus or minus 1.6 per cent, 19 times out of 20. (See How We Did It, below.)
In the L8R postal codes covering the north part of downtown Hamilton and the northwest corner of the inner city, 7 per cent of respondents stated they used walk-in clinics as their main source of health care, the highest rate in Hamilton. Compare that to the L8J postal codes of upper Stoney Creek, where just 1 per cent of respondents used walk-in clinics as their main source of health care.
People in the lower city also had the lowest proportion of respondents to report that their family doctor was the place where they normally received health care.
In the L8R postal codes, just 80 per cent of respondents said that they normally received health care at a family doctor, compared to 96 per cent in the L9H postal codes of Ancaster and Flamborough.
The lower city also had the highest rate of people who reported that they normally receive their health care in an emergency room or urgent-care centre, twice the rate of those in Ancaster, Dundas, Flamborough and Westdale.
The Spectator poll also showed that the lower city had the highest rate of people who had visited a walk-in clinic within the past year.
In the L8R postal codes, more than 40 per cent of respondents had been to a walk-in clinic in the past year.
So what do these numbers mean?
They show that people in poorer parts of Hamilton are more likely to fill their basic health care needs at a walk-in clinic, a hospital or an urgent-care centre and less likely to be visiting a family doctor.
That’s important because walk-in clinics, hospitals and urgent-care centres are meant to fill a very different role than a family doctor.
Walk-in clinics and emergency care are designed to treat acute, immediate problems. They’re not designed to track patients over the long haul or send them for cancer screens at regular intervals.
Bill Evans, the retired Juravinski boss, said he’s never been a fan of walk-in clinics for those very reasons.
“I do question the motivation of people who don’t want to form a relationship with people over time, that just see them, make quick judgments and give them antibiotics,” said Evans.
“It’s real easy to pull out the prescription pad, write something down and say goodbye.”
Dr. David Price, chair of McMaster’s department of family medicine, said that the quality of medical care provided at walk-in clinics isn’t the issue.
Studies have shown that the quality of care for acute medical problems is no worse at walk-in clinics than a family health practice.
The issue is continuity of care for patients, he noted.
“They see Doctor X at this walk-in clinic, they see Doctor Y at the same walk-in clinic, they see a different physician at a different walk-in clinic,” said Price. “Most of those places don’t have electronic health records so there’s no prompting.”
The challenge, Price noted, is to find ways to incorporate longitudinal care and preventive medicine into the routine of care provided at walk-in clinics.
“A lot of the docs that work in the walk-in clinics are temporary themselves,” said Price. “It’s a fill-in for three months or four months, so they don’t necessarily have a vested interest in their patients either socially or financially.
“There’s no incentive to do Paps or order a mammogram or give the FOBT kit.”
There’s another barrier to screening that’s often ignored.
A big reason people in Hamilton’s inner core have lower rates of attachment to a family physician and higher rates of walk-in clinic and emergency-room use is connected to higher rates of mental health issues.
Data from The Spectator’s original Code Red series showed that the 27 neighbourhoods with the highest rates of psychiatric-related ER visits were all in the former City of Hamilton and 25 of those top 27 were located in the lower-inner city.
“If you’ve got somebody coming in who is in crisis mode all the time, you end up spending your energy and resources dealing with the crisis as opposed to thinking about the preventative things,” said Price.
“For the patient as well, if you’re in crisis mode, going and getting a mammogram is not on your radar, especially if you’ve got mental health issues and housing issues and all the myriad of things that go along with that.
“If housing is your No. 1 priority, you’re not going to be interested in screening,” Price added. “If you’re worried about where the next meal is going to come from, you’re probably less likely to spend $2.50 to take a bus up somewhere to get your mammogram done.
“There are different priorities and I think that’s part of the challenge.”
It’s Oct. 21 and Bill McArthur is not answering his cellphone.
It’s been a year and a half since McArthur found out he had advanced inoperable lung cancer. The 71 year-old recently admitted, matter-of-factly, “I’m paying the price for 45 years of smoking.”
From a statistical standpoint, he’s already beaten the odds. Just one in six people on average survives a year with his type of stage IV lung cancer.
But his cellphone number is going unanswered. Five rings … six rings … seven rings. Uh oh.
Finally, McArthur answers on the eighth ring.
He’s still hanging in, he says gamely.
“I don’t feel too bad,” he said.
Not all the news has been good in the past month, however.
In mid-September, a CT scan showed his tumour had started to grow again. His doctor decided to discontinue his chemotherapy treatment because his body had become immune to it.
Just after Thanksgiving, he was prescribed a new drug called erlotinib, a last-chance treatment for late-stage lung cancer used only after other chemotherapies have already failed.
“There’s 30 in a box and he’s got five repeats on them,” McArthur said hopefully.
If there’s good news, McArthur said his doctor hasn’t yet told him he’s down to his last few months, although he does confess the latest developments have left him angry and frustrated.
“All that chemo they pumped into me and it didn’t do the trick,” he said. “Now I’m on pills. Is this going to do the trick or not?
“But you have to do what you have to do,” he added.
“I gotta have a positive attitude, eh?”
Nelly Sinclair is a community outreach worker with the CASTLE project
Funded by the Public Health Agency of Canada, the goal of CASTLE — Creating Access to Screening and Training in the Living Environment — is to increase the woefully low cancer screening rates in three inner-city neighbourhoods.
Since the start of the year, Sinclair has been to more church basement dinners, retirement homes, afternoon teas, group homes, seniors’ aquatic programs and community meetings than she can count in the McQuesten, South Sherman and Crown Point neighbourhoods.
“It’s got to be the best job in the world because building relationships is a lot more fun than working,” said Sinclair.
Gently, patiently, persistently, she’s trying to persuade people to get screened for breast, cervical and colorectal cancer. At times, it seems like a person-by-person campaign.
“They’ve got the majority of the people who are easy to do,” said Sinclair, who is 46 years old.
“I’m there to try to find the ones that aren’t easy and to make change with them.”
In some of the neighbourhoods she’s responsible for, less than 30 per cent of eligible men had been screened for colorectal cancer and fewer than 40 per cent of eligible women had been screened for breast cancer prior to the start of the CASTLE project.
“People don’t change just because you tell them they should,” she added. “There are many good reasons why people are not doing cancer screening so my job is to find out what those reasons are and to get these people to the point where they’re actually going to do the screening.”
A pastor’s wife, Sinclair, her husband and their four children moved to Hamilton two years ago from Alberta.
She’s not a health care professional by training — in fact, she was hired precisely because she wasn’t one.
For the people she’s trying to reach, health care professionals can sometimes seem scary.
“When I talk with somebody, I start with where they’re at and what their story is and where do we go from there,” Sinclair explained. “The conversation’s not finished if we’re not talking about cancer.
“If they don’t want to talk about cancer screening today, I’ll be back next week,” she said. “Whereas a health professional is providing a service, they let you know what the service is and then you come when you’re ready.
“I go to where they are when they’re not ready and try to work at that.”
She tells the story of one man at a group residence who she convinced to take the fecal occult blood test after many weeks of effort. Along the way, she also had to help him navigate his way to finding a new doctor located closer to where he lives.
“When I first talked to him, there was no way under the sun he was ever going to put his poop in the mail and he told me so in no uncertain terms,” she said with a laugh. “So it’s a process.”
His case highlights some of the barriers she’s found along the way — attitudes to screening, access to a health care professional, transportation.
She’s also seen the barriers placed by mental health issues when it comes to screening.
Sinclair recalled the time she was in a convenience store and ran into a man she’d been trying to convince to go for colorectal cancer screening.
“I asked him how he was doing and he said ‘I had a really bad weekend,’” Sinclair said. “‘I was in the hospital, I tried to commit suicide.’
“You learn that sometimes you have to back off with some people because their mental health issues flare up,” she added.
“It’s real life, it takes priority.”
If getting people to cancer screening locations is part of the problem, then perhaps one solution is to bring the screening to the people.
That’s the idea behind the Screen for Life coach, an initiative launched by Hamilton Health Sciences and the Juravinski centre in June.
The massive motor coach is outfitted with a mammography machine, an examination room to conduct Pap tests and a small office where a nurse can conduct cancer risk assessments.
Since its launch, the bus has been parked at the East Kiwanis Community Centre at the end of Britannia Avenue in the east-end McQuesten neighbourhood. No appointments are necessary and screening can be done the same day.
Staff on board can also provide FOBT kits for colorectal cancer screening and refer people for colonoscopies.
More importantly, if a patient is screened and doesn’t have a family doctor, a physician from the Crown Point Family Health Centre on Kenilworth Avenue has agreed to act as a referral if followup care is required.
The bus will eventually move to other neighbourhoods in Hamilton that have low screening rates and then on to other communities in Niagara, Brant, Haldimand and Norfolk.
“We’ve built a wall between health care and people,” said Patti-Ann Allen, manager of integrated cancer screening for the Juravinski centre. “Our goal is to provide what people need in these neighbourhoods.”
There’s been a learning curve along the way. When they first started, staff on the bus wore typical medical uniforms but they discovered some people felt intimidated. Now, they wear street clothes.
“We’re asking people to get on a bus and take their clothes off,” said Allen. “For some people, that’s not easy.”
The launch of the screening bus was the last big initiative presided over by Evans before he retired from the Juravinski’s top position.
It’s a good start, he noted, and an important one, but more needs to be done to significantly move the needle in parts of Hamilton.
“It isn’t just good enough to drive a big bus into a neighbourhood and open your doors and say ‘Here we are, come on in,’” said Evans. “It’s going to be how do you connect with people who may be distrustful because they’re recent immigrants and don’t understand health care in North America, how are we going to connect with people who are poor or undereducated.
“But it’s got to be done,” he added. “The screening rates down there are so low that if you ever want to get to 70 or 80 or 90 or 100 per cent of women, we’ve got to focus on the ones that aren’t coming at all or don’t know they should be coming.”
Theos Tsakiridis is a radiation oncologist who specializes in the treatment of prostate cancer.
It’s the one common cancer where there has been significant debate over the merits of large-scale screening because of the unique characteristics of prostate tumours.
Five out of six cases of prostate cancer are low-risk, slow-growing tumours that will have little impact on a man’s health. “You die with it, you don’t die because of it,” Tsakiridis said.
But one in six cases will be a fast-growing, potentially lethal tumour that behaves more like the other cancers found throughout the body.
The challenge is distinguishing between the two types.
The PSA screening test measures the level of prostate-specific antigen found in blood but there’s now debate about the test’s usefulness.
The higher the level of PSA, the greater the chance prostate cancer is present. But there are no agreed-upon values for PSA levels, and the test doesn’t necessarily distinguish between slow-growing and fast-growing tumours.
“PSA is a marker of prostate activity, not prostate cancer only,” said Tsakiridis. “The rate of change in PSA is an indicator that something is happening.
“Prostate cancer cells produce more PSA than normal tissues so basically we use that as a marker for further investigations.”
Some doctors argue the PSA test leads to unnecessary biopsies and treatments that can result in lifelong consequences, such as incontinence or impaired sexual functions.
Ontario’s health insurance plan will only pick up the cost of a PSA test for men who have already been diagnosed with prostate cancer or when a doctor suspects the disease is present.
Tsakiridis, however, is a proponent of the PSA test. He believes the problem stems from the misinterpretation of how to use PSA results and the fact that a PSA test is just one of the tools used by specialists to determine the best course of treatment.
“The whole idea of screening for prostate cancer has been followed by some physicians and not by others,” said Tsakiridis. “The PSA test has been dropped by a number of physicians and it hasn’t even been instituted by a number of older physicians.
“Probably in a number of situations that has led to people being diagnosed late.”
And finally, there’s the issue of smoking, the single most important behaviour that’s skewing the disparities in cancer incidence and mortality rates between the poorer and richer parts of Hamilton.
Of the 3,000 people who died of lung cancer in the amalgamated city of Hamilton between 2000 and 2009, nearly half of the deaths occurred in the lower part of the former City of Hamilton.
At a neighbourhood level, the lung cancer death rate along the Hamilton waterfront between Sherman Avenue and Wellington Street was nearly 15 times higher than it was in one Ancaster neighbourhood just east of Sulphur Springs Road.
Just how much of an effect does smoking have on cancer incidence across the city?
Between 2000 and 2009, the rate of all new cancer cases was about 14 per cent higher in the lower part of the former City of Hamilton compared to the five suburbs.
But if the lower city had the same rate of lung cancer incidence as Ancaster, that 14 per cent difference in overall cancer incidence between the lower city and the suburbs would drop to less than 2 per cent.
It’s long been recognized that there’s a strong association between income and smoking. Poorer people smoke more than richer people.
The Spectator’s telephone survey this summer shows just how massive the differences are between these two extremes.
Nearly 45 per cent of households in the L8L postal codes — covering the urban core between James to Ottawa streets from Main Street to the waterfront — had at least one smoker in the home.
Based on data from the 2006 census, the median family income in the L8L postal code area was less than $45,000 a year. In L9K, the median family income was over $110,000 a year.
Overall, 34 per cent of households in the lower part of the former City of Hamilton had at least one smoker compared to 15 per cent in Ancaster, Dundas, Flamborough and Westdale.
“The presence of a smoker in a home increases exponentially the odds of children and youth actually taking up smoking themselves,” said Kevin McDonald, manager of the tobacco control program for Hamilton’s public health unit. “The role model aspect, the normalcy of smoking — that will really be an indicator of future use.”
Smoking rates across the country declined steadily for decades, McDonald said, but the decreases have now started to flatten out.
“Now you’re into the real hardening group of smokers,” said McDonald. “That’s the really challenging group.
“They will freely admit that they want to quit and they wish they’d never started but their ability to successfully stop is challenged, either because they don’t have the resources or the right supports.”
Hamilton’s proximity to the Six Nations reserve, where cheap unregulated cigarettes are easily available, isn’t helping. About half of the city’s smokers say they consume contraband smokes.
The city conducted a survey of the location of cigarette vendors in Hamilton and discovered that they are disproportionately concentrated in the lower-inner city.
“Every school in the city has a minimum of five vendors within a one-kilometre radius,” said McDonald. “Some of these areas have over 50.
“So the product is highly normalized in certain parts of the city and highly accessible.”
McDonald also noted that programs to stop people from smoking can’t have a one-size-fits-all message. For some, emphasizing the health impacts works best. For others, the economic toll of smoking might be more effective.
“The challenge is how do you get to those high-risk populations so that they’re not disproportionately affected,” he added.
Scratch deep enough and everyone has a cancer story to tell, whether it’s related to a loved one, a friend or a coworker.
That’s a powerful testament to the fear that cancer conjures up from some dark place within us.
Here’s my story.
Last year, at the age of 25, my younger daughter was screened for one of the breast cancer genes because there’s a family history of the marker for the disease.
The day the results were in, she went by herself to the Juravinski centre to hear the news. She didn’t want anyone to be there.
When she was done, she called me from her car in the parking lot to tell me that she was indeed a carrier of the gene.
It means she has a 60 per cent chance of developing breast cancer at some point in her lifetime.
Surely that’s not right, I stammered. And I’m someone with a degree in human biology who has written cancer stories for years.
It can’t be right, I said, there has to be a mistake. As you’ve likely guessed by now, there was no mistake.
Of course, it also means she has a 40 per cent chance of not developing breast cancer in her lifetime. I had, and still have, a hard time seeing it that way.
I cried a lot that night. Oh how I cried.
I cried for a future that suddenly seemed a lot scarier. I cried at the thought of my little girl sitting alone in a parking lot trying to digest this news while at the same time putting on a brave face for her father.
This isn’t the way it’s supposed to be. Facing the mortality of your parents and grandparents is one thing, but contemplating your own child’s mortality? It’s almost inconceivable.
We agreed to meet for dinner at Ikea the next night. She walked through the doors hand in hand with my grandson, who was not quite three years old at the time, and I once again dissolved in tears. We stood hugging in the lobby, the three of us, me sobbing like a baby, holding her and my grandson as tightly as I could. I’m sure it was quite a spectacle for other shoppers.
If there’s a bright side to this story, it’s this: a lot of machinery has now been lined up to vigilantly monitor my daughter’s health regularly.
She now has a team of people looking out for her and if something bad does happen in the future, that vigilance combined with early detection should sharply reduce the consequences.
But there is still fear. Such is the power of cancer.
I received some good advice from a wise person I know who has several acquaintances carrying the same genetic marker, and it’s advice I quickly passed on to my daughter.
“Live your life like you’re in the 40 per cent but take care of your body like you’re in the 60 per cent.”
That’s probably good advice for everyone.
Steve Rudaniecki is one of 13 patients enrolled in the chronic lymphocytic leukemia clinical trial at the Juravinski, and “13 is my lucky number,” he said.
He started his first round of experimental treatment in early July and he’s had three further rounds of chemotherapy since then.
The results have been, well, almost beyond belief.
The swollen lumps and bumps protruding from his body that made him look like “the elephant man” — his words — have disappeared. His doctor told him there’s virtually no sign of any remaining tumours and his blood counts are back very close to normal.
“This has taken a big load off of us,” Rudaniecki said. “If this works, then people with my type of leukemia have something to look forward to.
“I waited 10 years for this opportunity and this hope.”
By the same token, 10 years have also taught him to be cautious. Past treatments that seemed promising petered out when his body became resistant to the chemicals.
“The cancer’s always on your mind,” he said. “This could last three months and work great and then all of a sudden my body says ‘I’ve had enough, I’m not going to chase this down.’
“It’s something that I’ve got to live with and hope for the best.”
For now, though, he said it’s like getting a last-minute call from the governor to be taken off death row. When he started the clinical trial in July, he was down to his last few months.
“If they start using the ‘R’ word with me — remission — then I’ll be ecstatic,” Rudaniecki said. “I’ll let the whole world know about this.”
Forget the ‘R’ word, said his wife, Susi. She’s prepared to use the ‘M’ word.
“I call it a miracle,” she said.
“We’ll make another anniversary, another birthday. So many things that are happening this year that may not have happened.
“I pray every day that this is a cure.”
At the beginning of August, Janice McFadyen was given five weeks to live.
The breast cancer she beat once had returned and spread to her liver, lungs and bones. With no treatment options left, the 45-year-old had moved into the Dr. Bob Kemp Hospice on Stone Church Road East.
Now it’s October 22, a crisp, cool day under a brilliant blue sky.
Steve Rudaniecki has made it this far. So has Bill McArthur.
But you’ve been most worried about Janice, haven’t you?
“I’m still here,” she says with a warm smile when I poke my head in her room.
The average length of stay for a patient at the hospice is 16 days. Janice has made it to 71 days.
The five weeks she had left have been stretched to 12 and counting.
“I thought I’d be gone by now,” she says, as she works her way one by one through the six pills she takes every morning to combat pain, epilepsy, anxiety and breathing problems. At night, she takes another six pills.
“I’m not sure what’s pulled me through,” she adds.
“Maybe all my dad’s prayers. Maybe my strong will.” She laughs.
She’s waiting for her dad, Ron Shaw, to arrive from his home in Midland.
He moved up there 13 years ago and now he’s routinely making the six-hour round-trip drive to the hospice to be with his daughter, leaving early in the morning and returning late in the evening.
She has a small army of family and friends who have been keeping her company at the hospice. Daughter Rachel is by her side daily and son Dylan, in his first year at Brock University, visits when he can.
But there are still times when she’s on her own, and we are never so alone as when we are alone with our fears.
Those are the worst times, she admits. It’s hard to keep the mind from racing.
“Are you afraid?” I ask.
“Oh yeah,” she answered. “I’m afraid of suffering.
“But my kids are amazing to have here with me. I love to tell them how proud of them I am and how sweet they are and how special they are.”
“How long can you keep going?” I ask.
“I don’t know,” she says quietly.
“Just get to the end of the day and pray to God this isn’t the day.”
Ensuring equitable access to health care
Improved delivery of primary care serves us all
By NEIL JOHNSTON
When we planned the first Code Red series, we expected to see differences between Hamilton neighbourhoods in their use of health services. And we certainly did.
What we did not expect was a dramatic gradient in measures of health and the almost uniform clustering of poorer health outcomes in the lower city, including large differences in life expectancy and the health of children.
A year later, the Code Red BORN series showed that poor pregnancy outcomes and lower rates of prenatal care were again skewed to the lower city, with a striking relation to measures of poverty.
Cancer: A Code Red Project shows that Hamilton neighbourhoods with more poverty experience higher mortality rates from cancer than wealthier neighbourhoods — possibly in part because people from areas where poverty is common are less likely than others to receive tests for early cancer detection. In the survey conducted by The Spectator for this series, people living in neighbourhoods with a lower likelihood of using early cancer detection programs reported both a lower likelihood of having a regular family physician and a higher likelihood of using walk-in clinics.
Throughout these series, lower-city neighbourhoods have consistently ranked with the worst levels of use of health services of proven value, such as early prenatal care and early detection screening for treatable cancers. That is troubling — not just because it suggests that our health care delivery system is not meeting the needs of some citizens but because people living in neighbourhoods with poor health outcomes rightly resent being branded. I have often heard the term “Code Red neighbourhoods” used in discussion of the series. This is a danger of observational research studies such as Code Red and they can only be justified if they lead to meaningful improvements in health care policies, delivery and, ultimately, health outcomes. If they do not they are simply a form of voyeurism.
Since the first Code Red series published, I have heard much talk about the need to reduce poverty in Hamilton as its association with poor health outcomes cannot be denied. A scan of what has been said and written about poverty reveals support for almost any opinion. Throughout history many wise people have offered opinions on the nature of poverty, many cloaked in religious doctrine. These range from a view of poverty as a noble state to it being part of the natural order of things brought about by the dissolute behaviour of its victims — the wages of original sin.
While poverty reduction is a laudable objective and the elimination of the effects of poverty on children should be a first goal of Ontario, the achievement of better health outcomes in the near and medium terms may require more specific measures.
Change in health behaviours can occur. The reduction in tobacco use in Canada over the last two or three decades has been dramatic and sustained, an example involving personal choice. Fatalities in motor vehicle accidents almost halved between 1990 and 2009, notwithstanding increased numbers of cars, most likely because of mandated safety equipment and car design, an example driven by legislation.
It would be unfortunate if a response to observed differences between neighbourhoods in screening rates for cancer prompted interventions aimed simply at increasing acceptance of these in areas of the city with low levels of use. What the Code Red series has found suggests systemic difficulties in our health system that require carefully designed solutions, and a long-term commitment to these.
An increase in acceptance of early detection measures for treatable cancers would occur if the number of people without access to a comprehensive family health care team was reduced. For Hamilton this may require the location of more comprehensive primary-care facilities in the lower city. The City of Hamilton, McMaster University and its department of family medicine have already shown leadership in this regard through the location of a new comprehensive health care facility at Main and Bay streets that will provide health services to thousands of people and serve as a health care hub for the area. However, drawing people in the lower city more completely into comprehensive primary care will also require thorough understanding of current barriers to access and clearly defined measures of success.
Improved access to better primary care may increase the use of health services and interventions of proven value. It may also help identify serious diseases before their effects on health become disabling, and even reduce the pressure on our hospitals. In the long-term, however, we need to recognize that two segments of our population deserve particular recognition if our city is to achieve its potential. Children are the future and yet we still tolerate their nurture being a lottery. That some children attend school hungry is widely known in Hamilton. It is an obscenity that this occurs. The British government has recently announced that all children aged four to seven in nursery schools will receive a free full lunch. This will replace a system that provided free lunches only to those whose parents passed a means test. Clearly there will be a cost to this program but it is the right thing to do and the long-term benefits, one of which may be the extension of the program to older children, are likely to be profound.
Many people living on the street or in shelters have mental health disorders. Homelessness means living with the certainty of danger and cannot but amplify an overwhelming likelihood that management of mental health problems will be suboptimal. The Mental Health Commission of Canada created the At Home program to evaluate the feasibility of offering people with mental health problems their own home. The results are very encouraging. Hamilton should examine the MHCC’s program very carefully.
Ensuring that the vulnerable in society such as children and those challenged by mental health disorders receive equitable access to essential health care and the basic necessities of life — shelter, nutrition and safety from harm — is a matter of social justice. Ultimately the quality of life for all in our community will be improved as a consequence of achieving these objectives and so will the likelihood of further investment in the local economy.
Neil Johnston is a faculty member in McMaster University’s department of medicine who has collaborated on all The Spectator’s Code Red series.
Many strategies must come into play to create change
It’s ‘unsettling’ to acknowledge our city’s wealth equals health disparities
By Dr. RALPH MEYER
The Spectator’s cancer series vividly describes that people from across our neighbourhoods face different risks of developing cancer and have different outcomes after a diagnosis of cancer is made. The series follows themes reported by The Spectator since 2010 — we live in a society where health and educational disparities exist.
That these disparities exist is not new information. The series’ important main message is that, despite this knowledge, there remains a clear relationship between socioeconomic factors and health. We also see that this relationship includes cancer.
In August, I took on the roles of president of Juravinski Hospital and Cancer Centre and regional vice-president for cancer services in our LHIN, and resumed a faculty position at McMaster University. I work with highly qualified and dedicated colleagues and together we face important challenges. Our community expects that we will address these challenges with diligence and compassion.
This community is important to me and to my family and we established roots here. I graduated from McMaster’s medical school in 1978 and between 1984 and 2006 was a member of McMaster’s faculty and worked as a hematologist for patients with blood cancers. During this time, my family and I lived and grew up in this community. To acknowledge that differences in cancer risks and outcomes exist in our city and can be traced to socioeconomic factors is unsettling. It is natural to ask “why does this happen?”
It is important to recognize that health disparities according to socioeconomic position have been observed in virtually every country studied. While health outcomes have improved dramatically over the past century for all populations, gaps continue to exist between higher and lower socioeconomic groups. Some information suggests the magnitude of these gaps has increased.
Much work has been done to try to develop strategies to improve this situation. In 1993, Yale University professor Jonathan Feinstein proposed that explanations for disparities in health could be considered along two dimensions.
The first dimension considered whether factors contributing to health status were directly or indirectly linked to household income. The second dimension accounted for factors that occurred over the lifespan of an individual, as well as factors related to ability to access and use the health care system. Combining these dimensions provides insight into the risk factors and outcomes associated with cancer, and direct courses of action.
For instance, if we combine both factors we can envision that a person’s health can be affected by availability of housing, neighbourhood environmental hazards, or the link between jobs and occupational risks. Actions to address this include social and regulatory policies.
When considering factors occurring over a person’s lifespan that are not directly associated with income, we anticipate that health, including risks of cancer, can be determined by underlying genetic risks or individual behaviours, such as smoking, diet and exercise.
Addressing this requires multiple strategies. With smoking, for example, actions can include social policy, such as bans on smoking in public places, educational initiatives and interventions such as smoking cessation programs.
Factors related to access and use of the health care system that are directly related to income include having medical and drug insurance, and proximity to health care facilities. Actions include social policies, such as universal health care and drug insurance, and strategies to provide social support, as well as health care professionals who tailor services to local health problems.
Factors not directly associated with income that affect access and use of the health care system include cultural compatibility of services, awareness of how to access these services, compliance with a professional’s advice and ability to self-identify health ailments.
Actions include providing an efficient health care system that is sensitive to cultural differences and aligns the availability of multiple health care providers.
Our regional cancer program incorporates strategies and interventions for cancer prevention, screening to detect tumours at precancerous or early stages, diagnostic testing, cancer treatments and posttreatment care. Factors contributing to health disparities by socioeconomic position occur at each step.
Importantly, differences by socioeconomic position are particularly associated with gaps in accessing prevention and screening interventions.
These observations led to our cancer program’s recent launch of a mobile coach bus. The coach brings access to cancer risk assessment, screening for breast, cervical and colon cancer, and information about cancer prevention. These services are provided to communities where risks of certain cancers are greatest and unmet needs exist.
Evidence from the social and medical sciences assist our understanding about health disparities. However, the complexities of factors that contribute to the disparities are sometimes difficult to explain. Equally, every strategy for action has important limitations.
From the perspective of public awareness, these analyses may appear sterile — information that evokes a more emotional and compassionate reaction is needed to engage the many elements of our society that have a role in contributing to solutions.
We will continue to work with all interested parties to determine how we can make a difference to the people we serve. We welcome new partnerships and thank The Spectator for profiling these important issues.
Dr. Ralph Meyer is the new president of Juravinski Cancer Centre, regional vice-president for Cancer Care Ontario and a professor in McMaster University’s department of oncology.
How We Did It
The Code Red telephone Survey
The Spectator used an automated calling system to place nearly 50,000 phone calls to residences and cellphones across Hamilton.
The telephone numbers belonged to a mixture of Spectator subscribers and nonsubscribers.
The calls were made in two batches during the afternoon and evening of July 3 and 4.
The polling area comprised Hamilton’s 20 urban Forward Sortation Areas (FSAs) used by Canada Post. An FSA is the territory covered by the first three digits of a postal code.
Hamilton’s 20 FSAs capture more than 90 per cent of the city’s population. The polling area did not include the rural parts of Flamborough and Glanbrook.
The number of calls made to each FSA was weighted proportionately to its percentage of the city’s population.
The 20 FSAs were also grouped together to create four broad areas of the city for comparison purposes.
Postal codes L8G, L8E and L8J comprised east Hamilton, which extends from Nash Road to the Grimsby border to Highway 20/53 on the Mountain. This group received 16 per cent of all calls.
The lower city was made up of postal codes L8H, L8K, L8L, L8M, L8N, L8P and L8R, extending from Nash Road to Highway 403, below the escarpment. This group received 37 per cent of all calls.
The upper city was represented by postal codes L8T, L8V, L8W, L9A, L9B and L9C, from Trinity Church Road to the Ancaster border to Twenty Road to the south. This group received 26 per cent of all calls.
West Hamilton was made up of postal codes L8S, L9G, L9H and L9K, extending west from Highway 403 and including the west part of Hamilton, Ancaster, Dundas and much of Waterdown. This group received 21 per cent of all calls.
There were just over 3,900 responses to the survey and the margin of error is approximately plus or minus 1.6 per cent, 19 times out of 20.
While attempts were made to make the survey as scientifically accurate as possible, there are limitations.
For example, the survey wasn’t designed to ensure that the age and gender of the respondents matched the demographics of the area, or what type of person may have refused to respond because of the technology involved.
It’s also possible that the calling list might not have accurately represented the city’s population.
Script for the telephone survey:
“This is the Hamilton Spectator calling. We are interested in your feedback regarding some health issues that affect Hamilton and we would like you to participate in a short automated survey of five questions that will take less than two minutes of your time. All of your contact information will remain anonymous and your participation is voluntary and greatly appreciated.
1. Do you have a family doctor? For yes, please press 1; for no, please press 2.
2. How often do you use a walk-in medical clinic as your main source of health care? For never, please press 1; for sometimes, please press 2; for always, please press 3.
3. Where do you normally go to receive your health care? For family doctor, please press 1; for walk-in clinic, please press 2; for hospital emergency room or urgent-care centre, please press 3; for none of the above, please press 4.
4. When was the last time you received care at a walk-in medical clinic? For within the past six months, please press 1; for six months to one year ago, please press 2; for more than one year ago, please press 3; for never, please press 4
5. Is anyone in your home a cigarette smoker? For yes, please press 1; for no, please press 2
6. Thank you for participating in our survey. Have a nice day.”
The 12 key determining factors of health
1. Income and Social Status
These two are the most important determinants of health. Health status improves at each step up the income/social hierarchy. High income determines living conditions such as safe housing and ability to buy sufficient good food. Healthiest populations are those in societies which are prosperous and have equitable distribution of wealth.
2. Social Support Networks
Support from families, friends and communities is associated with better health. These networks can be important in helping people solve problems and deal with adversity, as well as in maintaining a sense of control over life circumstances.
3. Education and Literacy
Education contributes by equipping people with knowledge and skills for problem solving, and helps provide a sense of control and mastery over life. It increases opportunities for job and income security, and improves ability to access and understand information to help keep them healthy.
4. Employment and Working Conditions
Unemployment, underemployment, stressful or unsafe work are associated with poorer health. People who have more control over work circumstances and fewer stress-related job demands are healthier and often live longer than those in more stressful, riskier work.
5. Social Environments
Importance of social support also extends to the broader community. Civic vitality refers to strength of social networks within a community, region, province or country.
6. Physical Environments
Physical environment is an important determinant. At certain levels of exposure, contaminants in air, water, food and soil can cause adverse health effects, including cancer.
7. Personal Health Practices and Coping Skills
Actions by which individuals can prevent diseases and promote self-care, cope with challenges, develop self-reliance, solve problems and make choices that enhance health.
8. Healthy Child Development
The effects of early experiences on brain development, school readiness and health in later life shows early child development is a powerful health determinant. A young person’s development is greatly affected by housing and neighbourhood, family income, level of parents’ education, access to nutritious foods and physical recreation.
9. Biology and Genetic Endowment
Basic biology/organic make up of the human body are a fundamental determinant. Genetic endowment provides an inherited predisposition to a range of individual responses that affect health status.
10. Health Services
Health services — particularly those designed to maintain and promote health, to prevent disease, and to restore health — contribute to population health.
Gender refers to the array of society-determined roles, personality traits, attitudes, behaviours, values, relative power and influence that society ascribes to the two sexes on a differential basis. Many health issues are a function of gender-based social status or roles.
Some may face risks due to an environment largely determined by dominant cultural values that contribute to perpetuation of conditions — marginalization and lack of access to culturally appropriate health care and services.
Source: What Makes Canadians Healthy or Unhealthy, by the Public Health Agency of Canada
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