Dr. Kim Ch, who led a clinical trial which found that over half of patients who used a new type of hormone-reducing medication saw a reduction in their risk of cancer progression and a 33% improvement in overall survival, in Vancouver BC., June 10, 2019. NICK PROCAYLO / PNG
A new drug has helped reduce the risk of death by 33 per cent in men with prostate cancer that has spread, according to the results of an international trial led by the B.C. Cancer Agency’s Dr. Kim Chi.
The double-blind study on the androgen receptor inhibitor drug called apalutamide was conducted in 23 countries at 260 cancer centres. It involved 1,052 men whose median age was 68. The study was sponsored by Janssen, the drug company who makes apalutamide.
At two years, those taking the treatment drug in addition to their standard treatment had a 52 per cent lower risk of cancer spread or death.
Chi, an oncologist, said overall survival rate is only about five years once prostate cancer has spread beyond the prostate so new treatments are desperately needed. The percentage of patients who took the drug whose cancer did not spread was 68.2 per cent, but in the placebo group the proportion was 47.5 per cent. There was a 33 per cent reduction in the risk of death for those who took the drug.
After about two years, 82 per cent of men in the investigational drug group were alive compared to 74 per cent on placebo. Men in both groups also took standard male hormone deprivation therapy showing that combination therapy helps to improve survival. Male hormones (androgens) like testosterone feed prostate tumours and currently, men with metastatic cancer are put on hormone deprivation treatment that has been the standard of care for many decades. Apalutamide, also called Erleada, is said to more completely block male hormones.
Chi said the drug is “not toxic” and there were no significant differences in the proportion of study participants in the intervention or placebo groups who experienced side effects, but skin rashes were just over three times more common in the drug group.
The drug has already been approved in Canada for certain patients with hormone-resistant, non-metastatic cancer but Chi said now that it is showing benefit for patients whose cancer has spread, he expects the drug will be approved by Health Canada for those patients as well, perhaps later this year. After that approval, provinces will have to decide on whether to expand funding for the drug, which costs about $3,000 a month. Chi said he expects more Canadian patients will have access to it next year.
“This is a next generation, better-designed androgen inhibitor and we really need better drugs for those with metastatic prostate cancer,” Chi said.
“There’s a critical need to improve outcomes for these patients and this study suggests this treatment can prolong survival and delay the spread of the disease.”
Chi was also a co-author on another drug trial, the results of which were published in the same issue of the NEJM medical journal. The ENZAMET trial, as it was called, is on a drug called enzalutamide (Xtandi). The results of that trial were similarly favourable.
About 2,700 men will be newly diagnosed with prostate cancer in B.C. this year. More than 600 men will die from it.
Overdose deaths linked to illicit fentanyl-laced drugs rose 21 per cent last year among First Nations people in B.C. even as there was a glimmer of hope that the crisis may have peaked among the general population.
Since the crisis began four years ago, B.C. Indigenous people have been overrepresented in the deadly count. Last year, they accounted for 13 per cent of the deaths, while making up 3.4 per cent of the provincial population.
Put another way, First Nations people were 4.2 times more likely to suffer a fatal overdose and six times more likely to suffer a non-fatal overdose than other British Columbians.
No one is suffering more than First Nations women and girls, who already have the worst health outcomes in Canada because of violence, exploitation and poverty.
They are unique in this epidemic where 80 per cent of the victims in the general population are men. Women, by contrast, account for 39 per cent of First Nations’ overdose fatalities last year and 46 per cent of the non-fatal ones.
They are bearing the brunt of marginalization, says Dr. Evan Adams, chief medical health officer at the First Nations Health Authority. Another measure of that is expected to come next week in the report of the murdered and missing women’s inquiry.
Among the reasons that he suggests for the widening gap between First Nations’ and the general population’s statistics are the effects of colonization including residential schools, the lack of social supports, childhood experiences and limited access to safe spaces and services.
The litany of dreadful statistics compiled by the provincial coroner’s office was read out Monday against the backdrop of a quilt with the names of some of the hundreds who have died. Among those names was Max, the son of the health authority’s knowledge keeper, Syexwaliya. Max died 12 days before his 41st birthday in March 2018.
“My son was just too lost,” she said. “I couldn’t do anything for him. I had to love and accept him as he was.”
Still, Syexwaliya takes heart from the statistics.
“The statistics make me feel that Indigenous people aren’t invisible and what’s brought out in the statistics and in the reports means that work is being done,” she said.
Addiction is a disease of pain — physical, emotional, mental and spiritual. Addiction piles tragedy on tragedy.
“It’s a journey of pain, a journey of suffering and a journey of seeking health services that couldn’t be found,” said the chair of the health authority, Grand Chief Doug Kelly.
Too many Canadians, too many British Columbians and too many First Nations people have already died, but Kelly said that for Indigenous people, things are not getting better. They’re getting worse, especially for those living in cities and most especially for women.
Overdose hot spots include the usual ones: Vancouver’s Downtown Eastside, the Fraser Valley, Chilliwack, Nanaimo, Victoria and Prince George. But for First Nations people, there’s also Campbell River and Kamloops.
Those stark differences mean distinct and targeted solutions are required. As Canada’s first Indigenous health authority, the First Nations authority (with its unofficial motto of “no decisions about us, without us”) is well positioned to do that.
With a goal of addressing causes of addiction, it has its own four pillars approach: preventing people from dying, reducing the harm of those who are using, creating a range of accessible treatments and supporting people on their healing journey.
The authority also strongly supports the call from B.C.’s chief medical health officer to decriminalize possession of all drugs for personal use as has been done in Portugal. (The suggestion was quickly shot down by the B.C. government, which says that could only be accomplished with federal legislation.)
Among the reasons Kelly cites are yet more terrible statistics.
Of Canada’s female offenders in federal prisons, Public Safety Canada reported last summer that 43 per cent are Indigenous. In youth detention, Indigenous kids account for 46 per cent of all admissions — a jump of 25 per cent in a decade.
Addiction is often contributing factor in the crimes committed, as is fetal alcohol spectrum disorder (although the report said there is no evidence that FASD is more prevalent among First Nations than other populations).
Because so many First Nations women are incarcerated, it means their children often end up in government care or with relatives, which only exacerbates the cycle of childhood trauma, loss and addiction.
So far, the First Nations Health Authority has spent $2.4 million on harm-reduction programs. It’s trained more than 2,430 people in 180 communities how to use naloxone to reverse fentanyl overdoses, has 180 “harm-reduction champions” and peer coordinators in all five regions.
But the biggest barrier is the one that led to Max’s death — lack of accessible treatment.
Last week, FNHA and the B.C. government committed $20 million each to build treatment centres in Vancouver and Surrey and promised to upgrade six existing ones. Kelly says that’s great. But it’s not enough. They’re still waiting for another $20 million from the federal government for construction.
Still, where will the operating money come from? That’s the next multi-million-dollar question. But it must be found.
Now that there is evidence that First Nations communities — and women in particularly — are suffering so disproportionately, ignoring them is unconscionable.
One in five Canadians lives with chronic pain, but the cries of an estimated 800,000 British Columbians are not only being ignored, their suffering is being exacerbated by regulators limiting their access to both drugs and treatment.
First, in a move unprecedented in North America, the B.C. College of Physicians and Surgeons imposed mandatory opioid and narcotic prescription limits on doctors in 2016 in an attempt to avoid creating additional addicts and having more prescription drugs sold on the street.
Physicians who don’t comply can be fined up to $100,000 or have their licences revoked.
Now, the college is setting tough regulations for physicians administering pain-management injections.
“I’m enraged,” says Kate Mills, a 33-year-old, palliative care nurse who has been on disability leave for the past 18 months. “People like me are living in chronic, intractable pain and being ignored by doctors who are either too scared or too callous to care.”
She has an uncommon, congenital condition that causes chronic inflammation near her sacroiliac joint and in her lower back, which pushes down on her nerves causing “exquisite pain” down her leg.
Her first doctor essentially fired her, refusing to treat the pain. The next one prescribed Oxycodone to help Mills through until she was able to receive a steroid injection at a clinic, which kept the pain in check for several months.
But by the time the injection’s effects were wearing off, her GP went on extended medical leave. The locum assigned to Mills refused to prescribe her any medication and told her to go to an emergency room where she was given a prescription.
After numerous ER visits, Mills finally found a doctor two weeks ago who is willing to provide medication for her between injections. But he agreed only after Mills signed a contract agreeing that she won’t sell the drugs, will only go to one pharmacy and take the drugs only as prescribed.
She is lucky, though. Her pain management clinic will likely meet the college’s new standards that were developed by an advisory panel over the past three years out of concern about patient safety.
“Increasingly,” the college says on its website, “Procedural pain management is being provided in private clinics and physician offices, but without much guidance on appropriate credentials, settings, techniques and equipment.”
The new regulations would require physicians’ offices or clinics to become accredited facilities with standards on par with ambulatory surgery centres.
That means having tens of thousands of dollars’ worth of equipment including resuscitation carts, high-resolution ultrasound, automated external defibrillators and electronic cardiograms with printout capability.
The college acknowledges that “patients do not require continuous ECG monitoring. However, the cardiac monitoring equipment must be available in the event a patient has an unintended reaction to the procedure.”
The disruption for patients will be huge, according to Dr. Helene Bertrand, a general practitioner, pain researcher and clinical instructor at UBC’s medical school.
She estimates that up to 80 per cent of the offices and clinics where the injections are currently being done won’t measure up and already wait times are up to 18 months.
When the new requirements come into force, Bertrand predicts patients will be waiting anywhere from four to seven years for treatment.
Bertrand herself will have to quit doing prolotherapy, which she has done for the past 18 years on everything from shoulders to necks to spine to ankles. That’s despite the fact she’s never been sued, never had a complaint filed with the college and has published, peer-reviewed research that revealed an 89 per cent success rate among 211 patients in her study group.
(Prolotherapy involves injecting a sugar solution close to injured or painful joints causing inflammation. That inflammation increases the blood supply and deposits collagen on tendons and ligaments helping to repair them.)
The college will not grandfather general practitioners already doing injection therapies. Instead it will restrict general practitioners to knees, ankles and shoulders. All other joint injections must be done by anesthetists or pain specialists.
For Joan Bellamy, that’s a huge step backward.
She’s suffered from chronic pain since 1983 and “undergone the gamut of medical approaches, often with excessive waits: hospital OP (outpatient), pharmacology, neurology, orthopedics, spinal, physiatry and private.”
Since 2000, she’s had multiple injections that have made a difference. But her doctor doesn’t meet the new qualifications.
“I am afraid that without her expertise … that pain will become an intolerable burden, and any search for treatment will result in inconceivable wait times and will debilitate me,” Bellamy wrote in a letter to the college and copied to me.
The near future for pain-sufferers looks grim with most physicians able to offer them little more than over-the-counter painkillers.
Ironically at a time when the provincial medical health officer and others are lobbying hard to have all drugs legalized so that addicts have access to a safe supply, chronic pain-sufferers are being marginalized. For them, it’s more difficult than ever to get what they need.
It’s forcing many of them facing a lifetime of exquisite and unbearable pain to at least contemplate one of two deadly choices: Buy potentially fentanyl-laced street drugs; or worse, ask for medically assisted dying.
During the fifth month of her wrongful imprisonment in a tiny, perpetually lit jail cell in China, Julia Garratt scribbled in her Bible that she was feeling hopelessness and was longing for heaven.
Julia and her husband, Kevin Garratt, had spent 30 years in China as teachers, entrepreneurs and Christian aid workers. Then, in 2014, they were accused by the Chinese government of being spies, in retaliation for Canada’s arrest of a Chinese businessman. Julia spent six months in jail; Kevin was locked up for nearly two years.
Since then, relations between China and Canada have grown even more tense, with Canada’s arrest of Huawei executive Meng Wanzhou in December. Today, China is impeding the import of Canadian goods and there are several high-profile cases of Canadians languishing in Chinese jails.
The Garratts — who share a similar story because it is now known they were seized in retaliation for a Chinese businessman’s arrest in Vancouver — have a unique perspective on how Spavor and Kovrig may be feeling five months into their captivity.
While incarcerated, the Garratts kept up their spirits by reading the Bible and writing inspirational thoughts, but also fought off despair — especially as time wore on, as it has for Spavor and Kovrig, who have now been imprisoned for 145 days.
“’If this is my new life, am I going to give up or am I going to somehow live it in here?’ I think those are the questions (we) wrestled with in an ongoing way, especially in month 4 and month 5. Because you never know what is coming the next day,” Julia said during an interview in New Westminster, where the couple now lives.
“Now that it is happening to (Spavor and Kovrig), I can totally relate to what they must be feeling and going through,” added Kevin.
Meng, who was arrested in Vancouver at the request of the U.S. government, is free on bail while waiting an extradition hearing, which could send her to the U.S. to face accusations of violating trade sanctions on Iran.
“China is likely to hold on to (Spavor and Kovrig) until Meng is released. This is the sad reality,” said Yves Tiberghien, a UBC political science professor and executive director of the UBC China Council.
It is unfortunate that Canada arrested Meng, he said in an email to Postmedia, arguing this country “became a pawn” when it detained the executive on behalf of the U.S. “(But) this point cannot excuse China’s arrest of the two Michaels and their harsh conditions. The whole situation is very unfortunate and painful.”
The men, who have been accused of stealing Chinese state secrets but have not been charged, are kept in isolation with little contact with the outside world and in cells with the lights constantly on, which some experts say is equivalent to torture.
Tiberghien believes China’s recent clampdown on importing Canadian canola seed was also in retaliation for Meng’s arrest. “It is unfortunate that such further escalation took place,” he said.
The diplomatic dispute worsened this week, with Canadian sellers of soybeans, peas and pork hitting obstacles at Chinese ports and with a second Canadian on death row for drug crimes — a sentence Foreign Affairs Minister Chrystia Freeland called “cruel and inhumane.”
Two former ambassadors to Beijing are urging Canada to take a harder stand against China but Prime Minister Justin Trudeau told reporters this week he had no plans to retaliate, saying his government is working for resolutions.
Today, the Garratts are saddened to see other Canadians face fear and uncertainty behind bars in China.
“There is such a human cost to all these political things. And after all the dialogue that happened back and forth between our countries over our case, I was so disappointed that another similar case erupted,” Julia said. “I was really hoping that wouldn’t happen, that (we) would have paved a new pathway to another solution to some of these political problems.”
As they reflect on their imprisonment with a remarkable lack of bitterness, the couple would like their survival and eventual release to provide encouragement to those in a similar situation.
“We would say, ‘You have to hold on to hope,’” Kevin said. “I’m hoping that maybe we offer a little bit of hope that you can get through it, although it is incredibly difficult.”
In 1984, after graduating from university in Ontario, newlyweds Julia and Kevin Garratt went to China for a “big adventure,” planning to teach English there for a year. Instead, they stayed for three decades.
“We just loved it,” Kevin said.
They thought China was a good fit for their passions for teaching, starting new businesses and providing aid to needy people.
They taught at universities, developed a model kindergarten and started a small NGO that helped to expand an orphanage.
In 2007, the Garratts, who had three children and adopted a fourth while living in China, moved to Dandong, a large city on the border with North Korea.
While Julia taught at the local university, the family opened a popular coffee shop that offered English-speaking nights, business dinners and talent shows.
By 2014, three of the Garratts’ grown children were studying or working in Canada, while the fourth was in university in China.
Nothing seemed amiss until that August.
When a mutual friend asked them to have dinner with a couple whose daughter was going to the University of Toronto, the Garratts’ alma mater, they agreed. When they arrived at the restaurant, the other couple said their daughter had a toothache and could not come.
“But we weren’t thinking anything sinister about it because they were friendly and nice,” Julia said.
After dinner, the Garratts rode the elevator to the lobby. When the doors opened, the lobby was packed with people with cameras, and Julia told Kevin they should leave through a side door because it must be a wedding or other event.
“But it wasn’t an event. It was an abduction,” Kevin said.
“I thought, ‘They’ve made a mistake. They’ve taken the wrong people,’” Julia recalled. “In an instant, everything changed.”
The husband and wife were taken out different doors and into waiting cars. The couple would later learn the officers who snatched them worked for the Chinese ministry of state security, which is responsible for counter-intelligence and political security.
Speaking in Mandarin, Julia asked one guard what was happening.
“He said, ‘Don’t worry, you’re safe.’ I was thinking, ‘I’m not safe,’” Julia recalled. “You have a part of your brain that is panicking and a part of your brain that is praying.”
They drove Julia to a police station and examined everything in her briefcase, from teaching documents to paper clips. It took her a long time to understand she was accused of espionage because she hadn’t learned that word in Mandarin.
She was shocked but believed they would quickly realize they had the wrong person. It was when they ordered her back into the car that she became terrified. “At this point you think: ‘China has become extremely unpredictable. I have no idea what they are going to do next.’”
Kevin was in another room, surrounded by eight or 10 “intimidating” officers with cameras.
“They’re saying we think you’re spies, and I’m thinking, ‘How can you think that?’” he said. “After quite some time, I heard Julia crying, screaming down the hallway.”
His frantic wife was yelling, “We just came to help.”
Shaken, Kevin signed a document that gave the police permission to investigate him. He had no idea what would come next or why.
The couple had never heard of Su Bin, a Chinese businessman arrested in B.C. in July 2014. Bin was arrested at the request of the United States, where he was wanted for hacking the data bases of American defence contractors to steal military secrets. One month later, the Garratts were arrested by China.
“When we were released, then I was told the reason we were taken is because Canada arrested Su Bin here in Vancouver, and China wanted to trade us for him, and that didn’t work out because he was later extradited to the U.S., and China was stuck with us,” Kevin said in a recent interview.
After being dragged out of the police station, a terrified Julia was driven for an hour to an unknown destination.
“I thought, OK this might be my last night.” she recalled. “When I was going out in the middle of nowhere, I started worrying about my family, my parents, my son, because I thought this is one of those China-makes-you-disappear things.”
Kevin was taken to the couple’s rented apartment, where he watched 18 officers ransack the place. They tore the sockets out of the wall, pulled photos out of their frames, and cut open a pillar in the middle of the room. They found no evidence of espionage.
At 5 a.m., the officers told Kevin to gather some clothes. He also grabbed his and Julia’s Bibles, which would become a lifeline for the religious couple during their months of isolation.
For the next 775 days, Kevin existed in a grim room where he ate meagre meals and endured hours of daily interrogation, with only occasional visits from Canadian embassy staff or his lawyer.
“There were 14 people in my cell. And the cell was not very big. So basically the beds were all together and there was a small aisle down the middle and a washroom in the corner,” he said. “There was absolutely no privacy.”
Julia’s tiny cell, where the lights were on 24/7 and she was under the eyes of two guards, was in the same facility as Kevin’s, but she didn’t know that.
“They wouldn’t give me any information about whether Kevin was alive or dead,” she said.
Seconds felt like minutes, minutes like hours.
Besides 15 minutes of outdoor time in the dark, she left her cell only to walk a few steps to an interrogation room, where she faced six hours a day of questioning.
The words in their Bibles sustained them. For Kevin, it was Romans 8:28: “All things work together for good.”
“At times I don’t think I could see how this was going to work for good, but you think: God, I have to trust you,” Kevin recalled. “Hopelessness and hope, they battle within you.”
Julia created a calendar in the front of her Bible and every day drew a picture of something for which she was thankful, like the time the guards replaced her heavy curtains with opaque plastic when she begged for sunlight, and then cut off a top layer of the plastic when she begged to see the clouds.
“If I focused on some of the kindnesses, it really helped me in the interrogations.”
There were also dark days, which she’d mark in her “Daily Thanks” calendar with a sign for sleeping as she tried to make it through by staying in bed. “There were times I couldn’t peel myself off the floor because of the overwhelming loneliness.”
In her Bible, which also became her diary, Julia wrote about her feelings. In month 1, she remained optimistic, writing she was innocent and safe. In month 2, she expressed surprising compassion for her female guards, who were ordered to spend day after day with her in that tiny room. By month 3, she said, “the human part of you starts to despair.” In month 4 came anger and feelings of guilt over family and friends left with little information.
In month 6, when she describes leaning on God to get through the day, Julia was released on house arrest, but still endured daily interrogations while awaiting a trial on charges that would eventually be dropped. She was allowed to visit Kevin only once, when Canadian embassy staff told her his health was deteriorating.
“My next meal will either be with Julia or Jesus,” Kevin told the embassy workers.
“They really panicked because it sounded like he was very much giving up,” recalled Julia, who fought hard to visit her ailing husband.
“I walked into that room and saw Kevin in handcuffs and he’d lost a lot of weight, and he looked extremely pale as if he was not going to be able to survive. … It was very very difficult to see him because I couldn’t do anything to help him,” she said. “I gave him messages from our family to encourage him. And said people haven’t forgotten you.”
The visit helped immensely, Kevin said. “You go back to the same cell, but you hold on to that hope that it’s going to be OK. But you just don’t know when.”
In April 2016, Kevin was found guilty of being a spy, and that September was handed an eight-year prison term. Two days after his sentencing, he was suddenly deported to Canada — to his family and to freedom.
“I think it takes some time to feel, if you want to call it, “normal’ again. But I think really from day 1 of being released and being back together, we were happy and grateful for so many people who helped us,” Kevin said.
The couple, who continue to do aid work overseas, saw a psychologist and were careful about their integration back into society. But just enjoying regular life has been cathartic, said Julia.
“All of a sudden, the sky is amazing, food is amazing, everything you appreciate in a different way. So that kind of joy has incredible healing power also,” she said.
They just wish history wasn’t repeating itself.
“We feel sadness that this is happening again,” said Julia. “As far as we know, (Spavor and Kovrig) didn’t do anything. But they are being held in probably a very similar situation to what we were.
“We would say to them: You have to hold on to hope.”
Postmedia asked Global Affairs Canada for updates on the cases of several Canadians being detained in China. This information was provided Wednesday:
Ex-diplomat Michael Kovrig and businessman Michael Spavor
Arrested Dec. 10, presumably in retaliation for Canada’s arrest of Hauwei executive Meng Wanzhou.
• Canada continues to call for their immediate release and has raised concerns with Chinese authorities.
Richmond winery owners John Chang and Allison Lu
Arrested March 2016 in China, for allegedlyunder-reporting the value of the wine they export to China.
• Canada is “closely following the case.”
Arrested in 2014 for drug-related charges and sentenced to 15 years in prison in November 2018. A new trial on more serious charges was ordered after Meng’s arrest and in January he was sentenced to death.
• Canada is concerned China has “arbitrarily” applied the death penalty, has sought clemency for Schellenberg, and has asked Chinese authorities to ensure his appeal of the sentence is “fair and transparent.”
Sentenced to death this week for his role in a methamphetamine ring.
• Canada has asked China to grant clemency to Fan, calling his sentence “cruel and inhumane.”
Canadian governments are addicted to the revenue from alcohol DALE DE LA REY / AFP/Getty Images
With so much focus on illicit drugs and overdose deaths, it might seem that opioids are the biggest addictions problem. Far from it.
Alcohol kills many more people each year (14,800 in 2014), results in more hospitalizations annually than heart attacks and is one of the most expensive and intractable health problems.
While cannabis was legalized a year ago and B.C.’s chief medical health officer is pushing hard for decriminalization and ultimately legalization of all illicit drugs, two Canadian addictions research centres want tougher regulations to mitigate the costs and harms of alcohol use and addiction.
The Victoria-based Canadian Institute for Substance Use Research and the Toronto-based Centre for Addiction and Mental Health want a minimum price of $3.50 for a standard drink in a bar or restaurant and $1.75 for off-premise sales. They also want a national minimum drinking age of 19, which is a year higher than national minimum for cannabis. Those are just two of the recommendations in reports they released last month that look at federal, provincial and territorial alcohol policies.
The reports also calling for stricter guidelines for advertising, restrictions on manufacturers’ and retailers’ promotions on digital and social media platforms, and a federal excise tax based on alcohol content that would replace the GST.
Over the past decades, the researchers found an erosion of effective policies and regulations.
“Overall, alcohol policy in Canada has been largely neglected relative to emerging initiatives addressing tobacco control, responses to the opioid overdose crisis, and restrictions imposed on the new legal cannabis market,” their report on the provinces and territories says. In several jurisdictions — Ontario is the worst example — “customer convenience and choice are being given priority over health and safety concerns … the responsibility of governments to warn citizens of potential risks is largely absent.”
British Columbia got a bare pass at 50 per cent based on its potential to reduce alcohol-related harm, which is not good. But it’s still better than the national average of 43 per cent.
Alcohol-related harm was estimated at $14.6 billion in 2014, according the Canadian Centre on Substance Use. Productivity loss due to illness and premature death accounts for $7.1 billion. Direct health care costs add another $3.3 billion and $3.1 billion is spent on enforcement costs for this legal drug.
Tobacco was second at $12 billion followed by opioids at $3.5 billion and cannabis at $2.8 billion. But the data predate the opioid overdose crisis and cannabis legalization.
Alcohol’s costs and harms reflect the fact that 80 per cent of Canadians drink. It’s not surprising. Culturally, we associate drinking with celebrations and good times. It’s We’re bombarded with images in movies, TV and ads of beautiful people drinking and having fun.
Scarcely a week goes by that there isn’t a “good news” story about research showing that a glass of red wine might be good for your heart or that yet another populist politician is campaigning on a promise to slash the price of beer.
Yet less was made of University of Washington’s Global Burden of Diseases Study last summer that found alcohol was the leading factor in 2.8 million premature deaths in 2016 and is so harmful that governments ought to be advising people to abstain completely.
One problem is that Canadian governments are addicted to the revenue from alcohol. Liquor sales and taxes provided $12.15 billion to federal and provincial governments in 2017/18 — $1.6 billion more than five years earlier, according to Statistics Canada.
Last year, liquor consumption rose in British Columbia, which already had the highest drinking rates in Canada. There were also record sales, which meant that in addition to tax revenue, the Liquor Distribution Branch provided $1.12 billion in earned revenue, up from $1.03 billion two years earlier.
Good for taxpayers? Not really. The reports by the substance-abuse centres recommends B.C. “reconsider the treatment of alcohol as an ordinary commodity: Alcohol should not be sold alongside food and other grocery items as this leads to greater harm.”
It’s based on research done last year by Tim Stockwell of the Canadian Institute for Substance Use Research. He and his researchers found that when access to alcohol is easier, more people die.
Between 2003 and 2008, “a conservative estimate is that the rates of alcohol-related deaths increased by 3.25 per cent for each 20 per cent increase in stores density.”
Estimates have to be conservative because alcoholics’ fatalities are mistakenly counted as death from one of more than 200 other kinds of alcohol-related fatalities including car accidents, suicide, liver diseases, cancers, tuberculosis and heart disease.
What’s surprising is that more than a century after legalization, there are no federal or provincial policies aimed specifically at mitigating alcohol’s harms and costs.
The opioid crisis has been the catalyst for governments to finally think about addictions and drug-use policies and, it’s now impossible to ignore the slower moving crisis caused by alcohol abuse and addiction.
In the coming months, the B.C. health officer also plans to release an alcohol addictions report. The B.C. Centre on Substance Use recently developed guidelines for best practices in treating alcohol addiction, but the provincial government has yet to approve or release those.
Prohibition proved a failure. Yet, legalization and regulation are not panaceas either. Because even with more than 100 years of experience, there is still no jurisdiction in Canada or anywhere else that seems to have got it right.
Dr. Amin Javer and his team perform sinus surgery on a patient at False Creek Surgery Centre in Vancouver. That is where Mr. Justice John Steeves had his sinus surgery under a contract with Vancouver Coastal Health. But the provincial government has severed contracts between health authorities and clinics that allow patients to pay for their expedited surgeries. Arlen Redekop / PNG
Patients are waiting even longer for operations like sinus or breast reconstruction because of the latest government crackdown on private clinics and the surgeons working in them, according to affidavits filed in court.
Sinus surgeon Amin Javer says he can’t even begin to make a dent in the number of patients waiting. That’s because he only gets four operating room days at St. Paul’s Hospital a month, allowing him to handle just 12 to 16 cases monthly.
He also operated on patients at False Creek Surgical Centre. But last fall, the government ordered Vancouver Coastal Health to end its contracts with False Creek because the centre was also taking money from patients who were paying the clinic’s facility fees to get expedited surgery.
Javer was the sinus surgeon who operated on the judge in the continuing constitutional trial launched by Dr. Brian Day. The judge would not be able to get that sinus surgery today because False Creek can no longer do business with the government. Yet False Creek is the only private clinic in B.C. with the sophisticated equipment Javer needs to do delicate sinus surgeries.
Not only can Javer no longer perform publicly funded operations at False Creek, but he’s also doing fewer at St. Paul’s because, as the hospital struggles to deal with growing waiting lists, his operating room days have been cut to eight hours from 10.
He has about 300 patients on a pre-surgical wait-list and another 220 waiting for surgery. “It will take me about four years to get through my current surgical wait-list.”
He used to tell patients they’d get their surgery in 2.5 years. Now Javer, the head of the St. Paul’s Sinus Centre and co-director of ear, nose and throat research at UBC, says he has to tell them the waiting time has gone up to four years.
“There’s no outsourcing at all, so the wait-list at the hospital continues to grow. And there’s no extra time being given to surgeons at public hospitals. All that extra operating room time we were promised hasn’t happened,” he said.
Dr. Nancy Van Laeken, a plastic surgeon who performs breast reconstructive surgery on breast cancer patients, said in her affidavit that the government did not increase operating room time in public hospitals enough to compensate for the private clinic crackdown. That means that fewer surgeries are being done in B.C., she said.
Van Laeken said she has privileges to work at five hospitals but only gets four operating room days in total each month. She is willing to do surgeries 10 days a month, but can’t get more time.
“Because of the limited OR time in the public hospitals, the wait times for surgery … in the public system are very long. For example, many of my patients wait (up to) 48 months for breast reconstruction surgery,” she said in her affidavit, noting that is 42 months longer than the target.
For years, health authorities have paid several private clinics to help because of backlogs of scheduled surgeries. But most private clinics also take patients willing to pay out of pocket for expedited surgery. The NDP government argues it is illegal for clinics and doctors to take money from patients for operations covered by medicare and the government is determined to stamp out the practice.
Last fall, the government introduced so-called compliance letters. Surgeons who do any work at private clinics that have contracts with health authorities must sign statements promising they will not do medically necessary work in both the public and private systems. If they refuse, they are banned from doing publicly funded operations at those private clinics that have contracts with health authorities.
If private clinics don’t agree to the same conditions, they won’t get contracts from health authorities or could have their contracts cancelled.
Javer and Van Laeken are among a group of surgeons who want B.C. Supreme Court Justice Janet Winteringham to issue an injunction to stop the province’s latest stab at clinics until the end of the Day trial, which is being heard by Justice John Steeves. Winteringham has reserved her decision.
The government’s unwavering approach doesn’t end there.
“Doctors who work at Cambie have received warnings from health authority executives that they may lose their surgical privileges in public hospitals if they continue to treat patients wishing to be treated quickly and privately at our facility,” said Day, co-owner of the Cambie Surgery Centre.
Rob Grant, a lawyer for Day, the Cambie Surgeries Corporation and other plaintiffs, calls the government’s actions “authoritarian” and counter-productive because surgeons get a limited amount of time — often only a day a week — in hospital operating rooms. Private clinics have, for over 20 years, allowed surgeons to use their excess capacity to help more patients, he said.
According to the government, the new contracting out policy has not hurt patients and “more scheduled surgeries are in fact being performed.” In the Vancouver Coastal Health region, however, the latest figures show about a third of patients who were waiting for surgery in the last nine months of 2018 were waiting for more than 26 weeks — triple the target numbers. While 86.4 per cent of scheduled operations were completed within 26 weeks, the target is more than 95 per cent.
In Fraser Health, the latest report also shows targets not being met.
A man injects drugs in Vancouver’s Downtown Eastside, Wednesday, Feb. 6, 2019. Despite significant efforts to combat overdose deaths in British Columbia, the provincial coroner says illicit drug overdose deaths increased to 1,489, just over the 2017 death total. JONATHAN HAYWARD / THE CANADIAN PRESS
The problem with the provincial health officer’s special report recommending decriminalization of all illicit drug users is that Dr. Bonnie Henry chose to make that her only recommendation.
Three years after a public health emergency was declared because of an epidemic of deaths from illicit opioids, B.C. still has no comprehensive addictions strategy.
It has a stunning lack of treatment services, no universal access to services, no simple pathway to what few services there are, no provincial standards or regulation of privately operated treatment and recovery homes services.
Government ministries such as health, mental health and addictions services, social development and housing remain siloed and the root causes of addiction remain largely unaddressed.
While there has been substantial investment in harm-reduction measures including overdose prevention sites, free naloxone kits (to reverse an opioid overdose), low-barrier shelters and poverty reduction, the needs are greater.
Overdose deaths have only hit a plateau – not dropped. Every day, four people British Columbians die.
Yet, Henry is adamant that decriminalization is the most important next step.
“It’s about a focus and an intent,” she said. “Instead of police focusing on requirement of the Criminal Code, it builds off-ramps to connect with services. And, that in itself, ensures those systems are built.”
The majority of those who have died of overdoses were young men using alone at home. Without fear of being arrested and with the stigma of addiction being reduced, the expectation is that addicts or recreational users would be more likely to go to a supervised injection site, use with a friend (with a naloxone kit at the ready) or call for help if they overdose.
Henry calls decriminalization “a necessary next step to stop the death toll from rising and to make harm-reduction services more readily available.”
But it’s a question whether those recreational users would do that, because many addicts say that they use alone for a variety of reasons — not least of which is that they don’t want to share their drugs or they don’t want anyone to know what they do when they’re high.
The report recommended two options for British Columbia to work around the Criminal Code provisions.
Solicitor General Mike Farnworth firmly and quickly said no to both. But he noted there are pilot projects in Vancouver, Abbotsford and Vernon where rather than charging for possession, police are linking users with services. An evaluation of those will be completed in the fall and, depending on the results, they may be expended to other communities.
Henry makes no secret of the fact that her ultimate goals for Canada are full legalization and regulation of all drugs to ensure that there is a safe supply. If that were to happen, Canada would be the first in the world to do that.
Portugal is mentioned frequently in the report and by Henry. Possession for personal use was decriminalized more than 20 years ago. But it was done only as part of a comprehensive, drug strategy.
Police still arrest anyone found with illicit drugs. They are taken to a police station where the drugs are weighed. If the amount is above the maximum limit set for personal use, they are charged and go through the criminal justice system.
If the amount is below the limit, tickets are issued and users told to appear at the Commission for the Dissuasion of Drug Use within 24 hours. There, they meet with a social worker or counsellor before going before a three-person tribunal, which recommends a plan for treatment.
People don’t have to comply. But if they are arrested again, the commission can impose community service, require that they seek treatment, impose fines and even confiscate people’s property to pay those fines.
That’s not the kind of decriminalization Henry is recommending. Instead, the onus here would be on police officers – not trained addictions specialists, psychologists or social workers — to connect users with services.
Part of the reason for the difference is that Portugal’s goal wasn’t legalization or keeping addicts alive until they chose to go treatment. Its focus was and is on getting addicts into treatment and recovery so they could resume their place in society.
Harm reduction is only a small part of the Portuguese plan. Its first supervised injection site has only recently opened. But there is free and easy access to methadone (which dampens heroin addicts’ craving for the drug) and free needles to stop the spread of infection.
These harm reduction measures are deemed to temporary bridges to abstinence for all but older, hardcore, long-term heroin users rather than long-term solutions. Of course, fentanyl and carfentanil have yet to be found in its illicit drug supply.
Its treatment services as extensive and include everything from outpatient treatment to three years’ residency in a therapeutic community during which time the users’ families are provided with income supplements.
Nothing in this decriminalization report moves British Columbia anywhere close to that kind of comprehensive system. And until we get there, it’s hard to imagine that this overdose crisis ending anytime soon.
Award-winning Chef Shane Chartrand is on a journey to discover indigenous food in Canada. He’s one of the chefs featured in the six-part, web series, Red Chef Revival, available on STORYHIVE’s YouTube channel and on Telus Optik TV on demand. Chartrand’s cookbook, Tawaw: Progressive Indigenous Cuisine, will be released this fall by House of Anansi Press. See Notes / Direction / PNG
It’s always a bit embarrassing when foreigners ask what Indigenous Canadian food is. After long, torturous pause, most Canadians might stumble out an answer like poutine, tourtière, bannock, Saskatoon pie or Nanaimo bars.
Of course, none of those is really Indigenous. They came with explorers and settlers who brought flour and sugar.
Yet, long before they arrived, Indigenous people had lived for centuries eating local plants and animals.
Initially, smart newcomers relied on their local knowledge to initially survive in this unfamiliar land. Others like Sir John Franklin and others tragically learned the folly of attempting self-reliance.
But because of colonization much of that knowledge has been lost along with other cultural practices and Indigenous languages.
“Even Indigenous people don’t understand what Indigenous food is,” chef Shane Chartrand told me when we talked recently. “We don’t know our own food. Powwow food is bannock, burgers, gravy and fries. That’s not Indigenous in my humble opinion.”
Recovering those foods, recipes and cooking techniques is something that Indigenous chefs like Chartrand are now in a position to explore.
In the style of Anthony Bourdain, three award-winning chefs fanned out across Canada to Indigenous communities that they didn’t know to help prepare and eat food that included unusual ingredients like cougar, bison tongue and seal.
Answering the question of what is Indigenous food is the premise of a six-part series called Red Chef Revival, available on the Storyhive YouTube channel and to Telus Optik TV On Demand subscribers.
Chartrand visited Nisga’a people near Prince Rupert and was served chow mein buns.
“I thought it was ridiculous. No way is it part of Indigenous culture. But they told me that along Cannery Row, there were Japanese, Indigenous and Chinese and they shared recipes so it becomes Indigenous,” he said.
“I don’t agree. But they think it is.”
He feels the same way about “powwow food” — bannock, burgers and fries with gravy.
But the seal stew prepared by Nisga’a fishing families in Port Edward fits Chartrand’s definition to the letter.
Not only did it taste really good — better, Chartrand said, than the other four ways he’s eaten seal — it’s sustainable and healthy.
One of the tragedies of lost Indigenous food and cooking is that it’s been replaced by sugar-, fat- and carbohydrate-laden diets that have contributed to skyrocketing rates of diabetes and heart disease.
(For the record, the chef is opposed to a commercial seal hunt. He supports sustainable hunting with every part of the animal used.)
The genesis of Chartrand’s personal journey of discovery is a desire to connect with the Cree culture denied him as a child. Taken into foster care at two, he was adopted by a Metis Chartrand’s family at seven.
His father taught him about hunting and fishing. But it’s only as an adult that Chartrand began learning about his own people’s traditions.
By then, he was already a rising star in the kitchen, having apprenticed at high-end restaurant kitchens. He’s competed on the Food Network’s Chopped and, in 2017, was the first Indigenous chef to win the Gold Medal Plates Canadian Culinary Championships and is the chef at the River Cree Resort on Enoch First Nation’s land near Edmonton.
This fall, Chartrand’s cookbook — Tawaw: Progressive Indigenous Cuisine — will be published by Anansi Press. It’s about his life, his travels and includes more than 70 recipes using traditional foods.
Top Chef finalist and Haudenosaunee chef Rich Francis seems less of a purist. While he acknowledges in the series’ first episode that bannock doesn’t really fit the definition of Indigenous food, Francis made both bannock and risotto on his visit to the Osoyoos band.
For the risotto, Francis used sage and cactus gathered on the Osoyoos lands that he described as “the Hollywood of rezs.” Both were cooked to accompany cougar seared over an open fire. The cougar was shot because it was deemed a threat to residents.
Like Chartrand, Francis isn’t promoting commercial hunting. But last year he
did threaten to sue the Ontario government for the right to cook wild game in his restaurant because government regulations are one of the many barriers to Canadians’ understanding, knowing and even tasting Indigenous foods.
Elk, deer, moose, bison, seal and the like can only be served at specially permitted events and not in restaurants. Only farm-raised meat can be served and that requires finding suppliers who can raise enough to guarantee a steady supply.
The idea of eating what the Canadian land alone can produce aligns perfectly with concerns about climate change and a sustainable food supply.
Rediscovering traditional foods with Indigenous chefs guiding the way seems a perfect way to learn how to do that.
Beyond that, there’s reconciliation. So many attempts at it are so earnest, so political and so difficult for some people to swallow, that sitting down and eating together may provide a new pathway because who doesn’t love a good meal?
Weeks after winning a silver medal in double-mini trampoline at the 2017 World Games, Tamara O’Brien felt a strange lump under her chin while watching TV in her mother’s Coquitlam duplex.
She received an ultrasound and a biopsy, but life went on as usual for the 20-year-old athlete who continued to train and then flew to Spain for another international competition, where she won silver again. After she returned home, she was summoned to her doctor’s office.
It was Friday, Oct. 13.
“The dermatologist says, ‘So they found melanoma in your lymph nodes.’ And I just started bawling,” O’Brien recalled. “It was this really weird shocking thing that was going on. I thought, ‘Oh my God I just got diagnosed (with cancer).’ I thought, ‘How am I going to tell anyone this?’”
O’Brien’s surprise is understandable, as it is relatively rare for someone her age to get cancer. Just two per cent of the new cancer diagnoses each year in Canada are in people 15 to 29 years old, representing about 2,250 people annually, says the Canadian Cancer Society.
As a result, experts say, there is a lack of programs, and sometimes even treatment, for these young people who are trapped between services for children and those designed for much older cancer patients.
“We are kind of the forgotten generation,” said O’Brien, who has Stage 4 melanoma.
“Most people think about their 20s as these years of figuring out their shit. And I feel like that all got taken away from me, right? I so desperately would love to move out of my house and start a career and think long-term with my boyfriend. But I don’t get to think about that — that’s not on my priority list any more. It sucks. It’s a really weird stage in your life to be diagnosed.”
O’Brien, who spent her childhood on her sport’s world stage, is now opening up about her difficult health journey. She hopes she can help other youth battling cancer who are struggling, as she initially did, to connect with people their own age.
“I was thinking: What do I want someone to take away from reading this story? A huge part of it is that my life isn’t sad. When people hear I have cancer, they must think, ‘Oh my God, that’s so depressing. She must be so sad. Her life must suck,’” she said.
“But, honestly, I’ve had some of my happiest days. … Your whole perspective changes when death sits right at your door. As morbid as it sounds, that’s true.”
O’Brien has her ups and downs, said her mother Tina Geulen, but “for the most part she is really positive. And she really tries to be.”
The pride in her voice dissolves into sorrow, though, when she talks about the injustice of this illness. “To watch this happen and not be able to have any control over the outcome and what is happening, is the hardest thing in the world.”
O’Brien has transferred her strong work ethic and determination to become one of Canada’s top trampoliners to her task of battling cancer, said former coach Curt De Wolff.
“I’m just so amazed by how it has brought out more passion for life in her,” said De Wolff, who coaches at the Shasta Trampoline Club in New Westminster.
“Sometimes you can look at something like this as an end, but I think it has almost been her second beginning. She has almost treated every day as a new beginning. It’s crazy impressive.”
By her own account, O’Brien has good days and bad days, days of determination and days of dark depression.
When Postmedia met with her just over a week ago, she was having a good day. But she was feeling “crappy” on Monday, when she posted on her blog that she just wanted to be “normal” again — although she wasn’t even sure what normal was anymore.
“Cancer at 22 is not ideal. Well, cancer at any age isn’t ideal,” she wrote. “I wake up some mornings so tired my eyes are literally glued shut wondering how I’m going to get out of bed. It’s a strange feeling knowing that cancer has taken up a huge part of my life and always will.”
The next day she was admitted to Vancouver General Hospital with abdominal pain, where she will remain over the weekend as doctors investigate what is causing her discomfort.
“I realize how powerful my story is to people. I think that is a huge purpose in my life, just being able to share and help, in whatever people decide to take out of my story.”
O’Brien had “an abundance of energy” when she was a toddler. “I used to stack stuff together when I was young and stand on it. My mother put me into gymnastics when I was two.”
She started trampoline at age nine and by age 10 was training 36 hours a week. She made the national team at age 11 in 2009, and competed that year in an international competition in Belgium. When she was 12, she won an unprecedented seven medals at the Canadian nationals, qualifying her for the world championships in Russia.
But the trip to Russia was going to cost $3,500 and O’Brien, who was raised by a single mother, didn’t think she could afford to go.
Publicity from her seven-medal haul led to Elaine Tanner, a 1968 three-time Olympic swimming medallist, offering to help O’Brien find funding, and eventually to Woody’s Pub in Coquitlam offering to sponsor the young trampolinist through its Dare to Dream Foundation.
“Her enthusiasm caught my eye,” pub owner Gordon Cartwright told The Province in 2009.
Woody’s Pub paid for all her travel expenses until she turned 18, for which both mother and daughter are eternally grateful.
“Without that she would never have been able to continue,” said Geulen.
She estimates the pub could have spent up to $40,000 supporting her daughter.
Medals piled up as O’Brien competed around the world.
“She was a very exceptional athlete. Amazing work ethic and very committed to what she was doing,” recalls coach De Wolff.
After she turned 18, O’Brien worked two jobs to continue to pay for her training and travel.
O’Brien’s discipline of double-mini trampoline — an acrobatic performance involving triple somersaults and twists, first on a mini-trampoline and then on a landing mat — is not in the Olympics, so the highest honour for her sport is the World Games very four years. When she became one of three Canadian trampolinists to qualify for the 2017 World Games in Poland, she changed her diet and trained even harder.
But something didn’t feel right.
“Every single day I was so tired,” she recalled. “I thought, ‘I just need to suck it up. I’m an adult now.’”
She put in the performance of her life, earning her best marks ever, and won silver for Canada.
“It was this really special moment because the hard work had paid off.”
After she returned home, she found the lump under her chin. It was near a spot where, the previous year, she’d had a mole removed that would test positive for melanoma.
“I never called it cancer. It didn’t seem like a big deal,” she recalled. “I never in a million years expected it would have turned into anything like it has now.”
O’Brien underwent an ultrasound and a biopsy, then focused on training for her meet in Spain in October.
Soon after, back home, she cried in the dermatologist’s office. “I never thought that this melanoma was going to come back,” she recalled thinking.
O’Brien knew her battle with cancer would force her to quit the national trampoline team and focus her energy entirely on her health.
While the vast majority of melanomas are caused by exposure to the sun or tanning beds, O’Brien grew up inside a gym and when outside always wore sun block. She is among the minority of melanoma patients whose cancer is linked to genetics, doctors have told her.
On Oct. 25, doctors removed the cancerous lymph nodes. “I had no cancer left in my body but there was a 50 per cent chance it could come back because it had metastasized,” she said.
She was told chemotherapy was not successful against melanoma, which made her happy because as a young woman with a boyfriend, she didn’t want to lose her hair.
But about a month after her surgery, a new lump appeared under her chin. The melanoma was back.
“So that was really awful to hear that I had recurrence six weeks after surgery. It was really, really aggressive.”
She would have four more surgeries, between January and March 2018, but doctors couldn’t remove all the stubborn cancer spreading microscopically through her neck. After a scan in April 2018, her oncologist delivered the worst news yet.
“She said, ‘You have spots in your lymph nodes, in your neck, under your armpit, in your groin. You have spots in your liver, you have spots along your bones. … It’s on your ribs. It’s on your vertebrae. It’s on your pelvic bone,’” a stoic O’Brien recalled.
The cancer was now Stage 4, the most severe.
The next day was April 20 — the date of the annual marijuana counterculture celebration — and O’Brien was starting immunotherapy treatment at the B.C. Cancer agency. “I remember joking, ‘It’s 4/20. I’m getting my drugs.”
Her body reacted poorly to the immunotherapy and the cancer worsened, leading to severe back pain that forced her last summer to quit her waitressing job.
Her grandfather took her to the B.C. Cancer to start radiation, where the staff assumed it was he who had come for treatment.
“I was like, ‘No, it’s actually me,’” she recalled. “The young adults are forgotten. There are supports out there, but I really had to look for it. Which is sad.”
One of the groups she found was Callanish, which provides a space for people to support each other through this life-altering disease. O’Brien counts on the group’s monthly drop-in sessions.
“You basically can sit there and bitch about your problems without anyone telling you how to be or that you can’t feel that way or that your feelings aren’t valid. Everybody in the room gets exactly what you are going through,” she said.
“They’ve helped me so much through my own struggles.”
But there is a need for more, said art therapist Sara Hankinson, who offers an art therapy program in Vancouver for young adults through the B.C. Cancer. Last week, she started an online group using Skype for young patients in other parts of the province.
Participants can discuss issues that are relevant to their lives, said Hankinson, such as body image or fear of losing their fertility after cancer treatments.
“Figuring out how to return to work can be a really big struggle for them. A lot of them are dating or in new marriages, which can often times be really challenged,” Hankinson said.
The challenges can also be medical for this age group, which is dubbed AYA, for adolescents and young adults, in health circles.
The survival rate for this group is improving, but not at the same pace as the advancements for children, said Dr. Karen Goddard, medical director of the Adult Childhood Cancer Survivorship Program at the B.C. Cancer.
“Some of the reasons are that AYA, in clinical trials and research, they are very under-represented,” Goddard said.
These patients often have one foot in childhood and one in adulthood and would benefit from a team approach. England has created special AYA clinics, and the B.C. Cancer hopes to develop one here, too.
“We need to bring adult and pediatric oncology together, so they can better look at treatment planning and psycho-social needs for these patients,” Goddard said. “I’ve talked to guys who say, ‘Everyone else (getting treatment) was over 60 and I’m here and I’m 25.’ They feel completely out of place and sort of abandoned and on their own. And cut-off from their peer group.”
Goddard is creating a program that would give young patients, after discharge, a document that shows their treatments, possible long-term health risks, and how they should be screened years down the road.
In the fall, O’Brien’s doctors put her on new pills that try to slow down the cancer, and they appeared to be working — although the nasty side effects include hair loss.
“I have had two stable scans showing disease regression, so things are getting smaller. They are doing their job for now, which is really awesome,” she said. “The problem with these drugs is that the cancer will become resistant to them, at some point, and it will start growing again.”
When that will happen and what she’ll do next remain uncertain, although her doctor is looking into a clinical trial in Toronto.
A GoFundMe page started for O’Brien last fall raised $16,000. She gave some money to her mom and thinks she may use the remaining $10,000 to fly back and forth to Toronto during the clinical trial.
Geulen is an on-call clerical worker for a local school district, a job that has given her flexibility to be with her daughter during appointments and hospital stays. But the less she works, the less she gets paid, often making it difficult to cover monthly expenses.
“This is just such a surreal life at the moment, and you can’t believe that it’s happening to you and you can’t believe it is happening to your child, and you can’t understand what you did to deserve this and what she did to deserve this,” she said.
After back pain forced O’Brien to quit her job last summer, she went on disability payments. She is grateful for the money, but notes she could never support herself on the meagre payments if she didn’t live with her mother.
“You are 100 per cent in poverty on disability, which I think people don’t even understand.”
She would like to get another job, but doesn’t have the strength to return to waitressing. “I’m trying to figure out what work would be good for me physically, and how I could make some money. So that is challenging right now, for sure.”
A highlight for O’Brien in the past six months was being the first recipient of the Forward Foundation, whose mission is to “provide young adults who are terminally ill with meaningful end-of-life experiences.” It was started by a remarkable young man, Christopher Cayford, while he was dying of cancer, and is now run by his mother, Claire Conde.
O’Brien’s chosen experience was to attend the 2018 Trampoline Gymnastics World Championships in Russia last November, so she could say goodbye to her Canadian teammates.
When she arrived in Russia, she received one heartfelt surprise after another: the Canadian team members wore “We Jump for Tamara” T-shirts, she was asked to be their flag bearer, and Olympic gold medalist Rosie MacLennan gave her one of the bronze medals the team won.
“I ended up walking away from that competition with the exact opposite outcome: It was not a goodbye. It was: My community is with me and they will always be with me,” O’Brien said, adding that she felt Cayford’s presence while in Russia.
“I definitely feel like he’s almost looking out for me. I feel like I know him but we never met. It’s super bizarre, and I’m not one to believe in stuff like that.“
For the last four months, since she returned from Russia, her cancer has been fairly stable. O’Brien has had two recent hospital stays: a two-week admission for a blood infection and her current treatment. To remain as upbeat as possible, she hung a poster board in her hospital room, and recorded the things for which she was grateful: her mom, nurses, friends who visit.
But the hospital stays taxed her spirit, which happens at other times, too. “I’ve had really dark days, days when I’ve been in the car driving and thinking this would be a good song at my funeral.”
She said, though, that she has good support from her mother, her boyfriend and some “true” friends.
Cancer, she jokes, can be “quality control” for relationships. Some people don’t know what to say and bolt, while others provide unwavering support.
“It was really, really hard initially getting diagnosed and thinking, ‘Well, this is my life now. So how do I introduce myself? ‘I’m Tamara and I have cancer.’ But it’s not a defining feature for me anymore.” she said.
O’Brien has now lived for one year as a stage 4 cancer patient — a thought that brings questions about her future but also relief that she is feeling more or less OK at the moment.
“I think it’s a celebration that I have had this year. And that hopefully I’ll have another,” she wrote on her blog. “I count my blessings each day because what else can you do when a huge chunk of your life is filled with uncertainty and with fear.”
‘People with chronic pain are often underemployed or unemployed because they simply cannot work and not all of us have extended health benefits and even health benefits run out,’ says Andrew Koster. CHAD HIPOLITO / CANADIAN PRESS files
The federal health minister is forming a national task force to provide input on how to better prevent, treat and manage chronic pain, which affects one in five Canadians and is often addressed with opioids.
Ginette Petitpas Taylor said in an interview Wednesday the task force will provide information on barriers that may prevent people suffering with persistent pain from receiving the treatment they need.
“This is the first step in addressing the issue of chronic pain in this country,” she said, adding the eight members will consult with governments and advocacy groups around the country and provide an initial report in June, followed by two more over the next couple of years.
Petitpas Taylor made the announcement in Toronto at the 40th annual scientific meeting of the Canadian Pain Society, which has long called for a national pain strategy, especially as the opioid crisis has exacerbated the stigma around prescribing and use of the pain killers.
She said she committed to exploring the creation of a national pain task force after a discussion with patients, clinicians and researchers at a symposium in Toronto last year, when she heard people living with pain often feel their condition is misunderstood and services are inconsistent.
“We have to recognize that Canada’s a big country and we certainly know there’s inconsistent services in provinces and territories so I have to really have a good understanding of what’s available and what’s happening out there,” Petitpas Taylor said.
Advocates for pain patients presented the former Conservative government with a plan in 2012, but Petitpas Taylor said it’s too early to say whether such a plan will be introduced.
Andrew Koster, who suffers from debilitating lower back and knee pain from a type of arthritis called ankylosing spondylitis, said he’s concerned the task force’s work will go nowhere if there’s a change in government in October.
“I’m looking for signs from the government that they’re taking this seriously and it’s not just something to state during an election campaign,” he said. “There has to be definite action.”
Koster, who will have surgery on his left knee next month following an operation on the other one last year, said he can no longer afford to pay $100 a week for acupuncture to deal with daily pain after he voluntarily reduced his opioids over concerns about any long-term consequences.
“People with chronic pain are often underemployed or unemployed because they simply cannot work and not all of us have extended health benefits and even health benefits run out,” he said from Victoria.
He said it’s crucial for the task force to identify non-drug costs for patients and provinces for services such as physiotherapy, occupational therapy and acupuncture as part of any strategy it may come up with in its final report.
Serena Patterson, a 60-year-old psychologist in Comox, has lived with pain associated with fibromyalgia for over half her life and also developed migraines that prevented her from continuing her teaching job at a college.
She said a three-year task force seems excessive, especially because advocacy groups have enough information on health-care gaps and patients wait too long to see specialists.
“I think we know that people are dying in an opioid epidemic and chronic pain patients are high on that list,” Patterson said.
“I would hope that this three years would be building, not more research. What needs to be built is a network of multidisciplinary team programs that are accessible, that are in rural areas as well as urban areas, that provide not only medical support but psychological as well as social support to help people be full participants in their life and in their community.”
Dr. Norman Buckley, scientific director of the Michael G. DeGroote Institute for Pain Research and Care at McMaster University in Hamilton, said hundreds of organizations, patients, clinicians and researchers came together in providing the federal government with the strategy in 2012. There was no action at the time but he said the opioid epidemic has now made that unavoidable.
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