Tag Archives: compensation

Women in Canada turn to courts in fight for compensation over birth control implant complications

The permanent birth control device Essure has been off the Canadian market for four years — but pain and serious complications linger among some women who are seeking compensation from a manufacturer that says it intends to defend its product “vigorously.”

Keri Ponace of Regina is one of the 10,000 Canadian women who opted for the device.

But Ponace, 43, said she believes that decision led to years of pain from a series of subsequent health issues.

“I didn’t know it was going to feel that bad, and I didn’t know I was going to be stuck in my bed for as many years as I was. Essure is like the worst thing I’ve ever been through,” she said.

Ponace is not alone.

More than 700 Canadian women have gone after Essure’s owner, multinational pharmaceutical company Bayer, for compensation as a result of complications they say are from the birth control device.

“I think they should still be held accountable, and they should be responsible [for] the products that they back up,” Ponace said.

Canadian women will have to fight for that accountability in the courts. But it’s a different story for women in the United States who had the same experience.

Claims handled differently in Canada, U.S.

Bayer doesn’t admit any liability despite pulling the device off the market in Canada in 2017 and everywhere else around the world by 2018, but it’s agreed to pay $ 1.6 billion to settle thousands of lawsuits in the U.S.

It hasn’t settled any lawsuits in Canada, though, and doesn’t intend to.

  • Watch “No More Tears: The Essure Legacy” on The Fifth Estate on CBC-TV Thursday at 9 p.m. or stream on CBC Gem.

In a statement to CBC’s the Fifth Estate, Bayer Canada said that the U.S. settlement reflects a commercial decision driven in large part by the unique aspects of the U.S. mass tort system, including the high costs of U.S. litigation.

“The U.S. settlement announced on August 20, 2020, has no impact on pending litigation in Canada, as Bayer’s decision to resolve the U.S. cases is based significantly upon factors that are specific to the U.S. legal system,” read the February statement.

“Bayer believes that it has meritorious defences and intends to defend itself vigorously in the remaining litigation.”


Toronto personal injury lawyer Renée Vinett is representing just over 100 women in a mass tort lawsuit against Bayer. ‘We will vigorously litigate this in hopes of getting some sort of relief,’ she says. (John Badcock/CBC)

Toronto personal injury lawyer Renée Vinett is representing just over 100 women in a mass tort lawsuit — which involves consolidating numerous similar lawsuits — against Bayer.

She says she’s not surprised by the response.

“We simply have to go through the litigation process and fight the good fight,” Vinett said.

“We will vigorously litigate this in hopes of getting some sort of relief, if you can call a monetary relief, relief in this situation … just to get some sort of justice for these women who have lost so much as a result of a product that should never have been on the market.”

The other approximately 600 women seeking compensation are part of a country-wide proposed class-action lawsuit. They’re appealing a court decision last year against allowing their case to be certified. A class action in Quebec with about 47 women represented by the same firm has been certified, allowing it to go ahead.

Chronic abdominal and pelvic pain, excessive bleeding and autoimmune responses in women who have metal allergies are just some of the symptoms experienced by Vinett’s clients.

“Oftentimes, at least the clients I’ve spoken to, have small children and they’re trying to get on with their life and care for their family, and they are incapacitated by the side effects or complications of Essure,” she said.

A non-surgical procedure

Like so many women looking for birth control, Ponace took the advice of her doctor to have Essure implanted.

Doctors and the company that manufactured Essure claimed it was a safe and easy option compared with tubal ligation, which is surgery to close a woman’s fallopian tubes — more commonly known as having the tubes tied.

Essure was designed to work by inserting a two-centimetre coil into each fallopian tube. Scar tissue would form around the coils, closing off the tubes and preventing sperm from meeting an egg.


A diagram shows how Essure is designed to prevent pregnancy. It was designed to work by inserting a two-centimetre coil into each fallopian tube. Scar tissue would form around the coil, closing off the tubes and preventing sperm from meeting an egg. (Bayer)

It was promoted as a non-surgical, non-invasive sterilization procedure that could be done in the doctor’s office in just 15 minutes.

But six months after the implant in 2012, Ponace said she was in pain — leaving her stuck either on the couch or in a fetal position on her bed, which made work and caring for her five children difficult.

In 2016, she convinced her doctor to remove her tubes containing the coils, but that didn’t relieve the pain.

“It’s like I have two screwdrivers drilling me in the sides of my hips … or somebody just took a knife and pushed it and twisted it,” Ponace told the Fifth Estate in 2018.

WATCH | The experience of having Essure coils removed:

Regina woman Keri Ponace disappointed permanent birth control device led to a hysterectomy. 0:44

After asking for an X-ray of her pelvis, as advised by a large online community of other women struggling with Essure, it was discovered that Ponace had a one-millimetre metal particle left from Essure lodged in her uterus.

Unable to remove just the fragment, Ponace ultimately had to undergo a hysterectomy.

‘It was completely traumatizing’

Ponace first shared her story in 2018, when a Fifth Estate investigation found that insufficient information about Essure and the adverse reactions women were experiencing put some women’s health in jeopardy.

At the time, she was just weeks away from having the hysterectomy.

More than three years later, Ponace has been able to gain back what she values most — spending time with her kids.

“I can take my kids to the park and spend quality time with them, they’re not constantly seeing mom [in] pain … it was heartbreaking for them before. I can move on and move forward,” she said.

Although Ponace says she is feeling better physically, she hasn’t been able to completely put the ordeal behind her.

“Psychologically, I’m upset because I feel like there’s still a part of me missing, right?

“It was completely traumatizing all the way to the bitter end,” Ponace said. “That was the scariest thing in my life that I had to go through.”

New data backs claims

Essure, which came on the Canadian market in 2002, was originally developed by a small U.S. company called Conceptus Inc. and then sold to Bayer in 2013.

More than one million devices were sold globally, with the majority of sales in the U.S.

Bayer said it pulled the device because of commercial reasons driven by “a decline in patient demand.”


Essure was made and marketed by a small American company called Conceptus Inc. and then sold to Bayer in 2013. (Matej Povse/Ostro)

Recent data now backs claims that Essure wasn’t necessarily the safer, permanent procedure it was billed to be.

A post-market surveillance study of 1,128 women mandated by the U.S. Food and Drug Administration (FDA) found that 4.5 per cent of women who had tubal ligation experienced chronic pain, but for those using Essure, the rate was double at nine per cent.

The data published last year also found that 10 per cent of women with tied tubes had abnormal bleeding compared with 16 per cent for women with Essure.

The probability that women would have the coils removed after 21 months was one in seven, or 14.3 per cent.

Most recently, Bayer was found to have sat on thousands of women’s complaints of injuries that it failed to disclose to the FDA.

They came out in the summer of 2020, only after women in the U.S. filed lawsuits against Bayer.

The company disputes it was obliged to report those complaints and says that some were actually duplicates.

Information about issues with Essure historically hasn’t always been easy to come by.

Health Canada, which approved Essure in 2001, maintains an online registry where patients and doctors can report complications. However, only manufacturers and importers were mandated to report what they refer to as “adverse events.”


Dr. Nicholas Leyland, an obstetrician-gynecologist at McMaster University and Hamilton Health Sciences, has done about 100 Essure implants himself — and only reported adverse events to Health Canada when patients came back for removal. (Doug Husby/CBC)

As previously reported in 2018, It took CBC News two years through access to information requests to obtain raw data from Health Canada on problems involving Essure.

As a result of CBC’s reporting that was part of a larger global media collaboration called The Implant Files, it’s now mandatory for hospitals to report any side-effects from medical devices such as Essure.

There are currently 98 adverse event reports associated with Essure on the database.

Dr. Nicholas Leyland, a physician in Hamilton, says transparency would have been helpful.

“If we had known that there were many patients who were experiencing difficulty, we could have been looking into this and investigating it much more diligently in the early years of this device, rather than learning about it, you know, at least 10, 12 years after the fact,” he said.

The obstetrician-gynecologist at McMaster University and Hamilton Health Sciences has done about 100 Essure implants himself — and only reported adverse events to Health Canada when patients came back for removal.

“In fact, this is a huge deficiency in the system in the United States as well as in Canada, because it’s voluntary reporting of any adverse events, and many of the doctors really don’t know the definition of what an adverse event would be associated with such a procedure,” Leyland said.

“So I think that’s something that working with Health Canada and the U.S. with the FDA, that physicians in the medical profession really need to streamline this process to make sure that we’re always aware of any complications with devices or problems with medications, etc.”

Women have become ‘E-sisters’

It was online and in private Facebook groups that women began to associate their symptoms with Essure. It was a space where their claims were validated and it wasn’t all in their heads, like so many say they were told by their doctors.

They’ve banded together, some referring to themselves as “E-sisters.”

There are more than 500 members in the main online Canadian group, along with various other provincial groups.


Amy Vandermeulen of Regina had to have two surgeries to remove the Essure coils and remaining fragments left behind. She hosts a community television show called The Four on Access Communications and has recently dedicated one of her segments to discussing problems with the device. (Matthew Howard/CBC)

Amy Vandermeulen, 46, of Regina says it’s important for women to be armed with information, which is why she decided to use her platform to talk about Essure.

She hosts a community television show called The Four on Access Communications and has recently dedicated one of her segments to discussing problems with the device.

“I feel it’s important to me because it’s bringing out awareness, like some women who may be going through the same [or] similar health issues and if they have those coils in them … I think they need to be informed,” she said. “I wasn’t informed. I didn’t know where to look.”

Vandermeulen says she suffered from a range of symptoms as a result of the implant in 2012, including headaches and cramping, and was hospitalized numerous times.

“The excessive bleeding just kept going and going.”

WATCH | Spreading awareness to women:

Community television host discusses Essure device on her program 0:51

She ultimately had to have a partial hysterectomy in 2017 to remove the coils. Vandermeulen says she just needed them out.

But coil fragments were left behind after the partial hysterectomy, which led to a second surgery in 2020.

“I hope people — other women will reach out, so I can maybe help guide them and send them in the right direction, if they’re not sure where to turn to,” Vandermeulen said. “Just to be that added support for other women.”

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CBC | Health News

Born with malformed limbs 52 years ago, thalidomide victim still fights for compensation

Noëlla Hébert isn’t scared of anything.

The 52-year-old from Saint-Louis-de-Kent, who was born missing an arm and with malformations in her other limbs, says after a lifetime of fighting for acceptance and compensation, there isn’t anything left for her to be afraid of.

“I fought all my life to be to be looked at as a normal person,” she said. “This has been a battle from the beginning.”

Hébert is one of three New Brunswickers who were rejected from a 2015 federal compensation program for thalidomide victims. They have been arguing even since that they deserve to be recognized, compensated and given assistance for their far-reaching physical disabilities.

‘I took a drug, Noëlla’

Hébert grew up in rural Kent County knowing she was different and knowing her mother carried an enormous burden of guilt.

“I can remember my mom always said, ‘I took a drug, I took a drug, Noëlla, I took a drug.’ But me, I didn’t understand that … you always have in the back of your mind, ‘Why did she take that pill?'”


Hébert, at six, along with her mother, father and two older brothers in a family photo from 1974. Hébert says everyone in her family supported her, no matter what she wanted to do. (Submitted by Noëlla Hébert)

Thalidomide, promoted as a treatment for morning sickness, was approved and arrived in Canada as samples in 1959.

Canada was one of the last countries to pull it from the shelves in 1962, but Hébert and others believe it was still in circulation in rural New Brunswick for years after.

Her mother, Marie, said that’s what the local doctor gave her in 1967.

“She took sick,” said Hébert. “She had a very sore stomach. She had insomnia. She couldn’t sleep. And my grandma had just died. So that was the creation of all that.”

She explained that in the 1960s, when the village doctor gave you a bottle of pills, you didn’t ask questions.

“People were ignorant. They thought that medication were miracle cures,” said Hébert. “Back then, when you had an ailment if you could have the help of a doctor — that was God.”


Hébert was born without a left arm and with severe malformations in her other limbs. Her right leg is very short and attaches directly to her torso with muscles. She has no hips. A surgery was performed to turn her foot to allow her to use her heel as a make shift knee in her prosthetic leg. (Pierre Fournier/CBC)

There is no record that proves that the bottle of pills given to Hébert’s mother in 1967 contained thalidomide. There were few pharmacies in rural New Brunswick, and it was common for doctors to give medication directly to their patients. The lack of a prescription kept Hébert and 166 others from being part of a federal compensation program for victims in 2015.

“It was just a bottle of pills that was given from one hand to the other,” she said. “And so I did not have the documents that the government wanted but I still was a thalidomide victim.”

‘We got to push’

A 30-minute drive from Saint-Louis-de-Kent, Paul Richard was born in Rogersville in 1969 with malformed arms.

He believes his shorter-than-normal right arm, twisted hand and malformed left arm are the result of his mother also taking thalidomide.


Paul Richard, seen here after having several surgeries on his right arm, told his parents at the age of seven that he didn’t want to undergo any more operations. He says he ‘made do’ with his deformed right arm and went on to be a heavy equipment operator. (Submitted by Paul Richard)

“She was given a pill to alleviate nausea during her pregnancy and back then, well, they just took whatever doctors gave them and didn’t question anything,” he said.

Richard had three major surgeries on his right arm as a young child and remembers telling his parents when he was seven years old that he wasn’t going to have any more.

“I made do with what I had,” he said. “I played hockey all my life — I wasn’t Wayne Gretzky but I had fun.”

As far as he knows, his legs are fine. Richard jokes he’s always been able to “run from trouble.”

The husband and father of two worked as a heavy equipment operator at his father’s business when he finished school. When he could no longer cope with the physical demands, he changed careers and became a highway maintenance supervisor and now works in an office.


Richard worked for years as a heavy equipment operator until the pain in his good arm sent him to a doctor, and he found out his good arm was also malformed. He considers himself lucky to have been able to change careers twice in his life. (Submitted by Paul Richard)

Richard said he probably would have given up his battle for compensation, but Hébert is his mentor and if she keeps fighting, he will too.

“Thank God for Noëlla. I would give up but she keeps on telling me, ‘We got to push.'”

‘My body is my record’

Hébert, Richard and another New Brunswick man, from Val-Comeau, near Tracadie-Sheila, were among the 167 people who were rejected from the 2015 Thalidomide Survivors Contribution Program, which included a lump sum payment of $ 125,000, ongoing support payments and access to a medical assistance fund.

We’re not fraudsters, we are victims.-Noëlla Hébert

Even though their mothers have both signed affidavits saying they took thalidomide while they were pregnant, and even though genetics reports and doctors all point to thalidomide as the cause of their disabilities, neither Richard nor Hébert qualified.

“They put us all in the same basket that we would all try to fraud the system,” Hébert said of the third-party the government hired to determine who would qualify for the government program.

“But we’re not fraudsters, we are victims. It’s really really clear to see my body is my record — When you see me you can’t unsee me.”


Hébert has a prosthetic leg and has undergone several surgeries on both legs to allow her to walk. She has no hips and explains her legs are held in place with muscles. (Pierre Fournier/CBC)

Gesturing to her missing left arm, she points out the tip of a finger that pokes out of her shoulder. Her right arm looks normal, but has four skeletal malformations, including a thumb that is more like a fifth finger.

Her “good leg” does not have a hip and she has required reconstructive surgeries to allow her to walk. On the other side, she has a very short leg that is attached to her torso, again with no hip. She has undergone a surgery to turn her small foot backwards so she can use her heel as a makeshift knee in her prosthetic leg.

Forgotten victims

After 52 years, Hébert explained, her continued fight isn’t about the money.

She wants Canadians to recognize that she and others have lived their entire lives with severe disabilities and discrimination.

Hébert considers herself one of the “lucky” survivors, because she was born with a “firecracker personality” and a family who saw her as normal.

“My mom says that … when she looks at me, yes, I’m deformed. But when she looks aside she pictures me as a normal child. That’s the picture she had to create in her mind to be able to cope with this.”


Hébert uses a scooter to get around her home. She does not have a ramp to get into the house and bought the scooter at a bargain price from a seller on Kijiji. (Pierre Fournier/CBC)

Hébert laughs as she remembers her big brother’s reaction when, as a child, she told him she wanted to learn to swim.

“He said, ‘OK, let’s go.’ There was no, ‘How are we going to do that?’ or ‘You can’t do it.'”

Hébert went on to attend university and to become a lawyer. It was one of the most difficult times of her life not because of the academics, but because it was nearly impossible for her to walk from her dorm at the University of Moncton to her classes.

“When you only have one leg and you have to walk in three inches of snow and the leg’s not going — that was my biggest, biggest challenge,” she said. “How many times I fell on the snow, in the snow with my 50 pounds of books on my back and came to my dorm crying and called my dad, my mom.”


Hébert graduated from the University of Moncton law school and has been a practising lawyer for more than 20 years. (Submitted by Noella Hebert)

Again, Hébert’s family encouraged her not to give up when she was ready to quit.

“My dad would say, ‘Well go to bed, pray, put some A535 [medicated cream] and the first thing I want you to do when you open your eyes, call me and tell me how is it going.’ And just on cue the next day it was always going a little bit better.”

Hopes rise and fall

In January 2019, Hébert and Richard were hopeful once again when then minister of health Ginette Petipas-Taylor announced a new compensation program for those turned down in 2015.

We didn’t ask for that pill to be introduced in Canada, but we had to deal with the consequence.– Paul Richard

The Canadian Thalidomide Survivors Support Program promised a one-time payment of $ 250,000, annual payments based on the person’s level of disability and access to a medical assistance fund.

But their hopes were quickly extinguished. This time the hurdle wasn’t missing documents, it was birth dates.

The first step of the preliminary screening for the new program is that you were born within five years of March 2, 1962, when thalidomide was pulled from shelves in Canada.

Noëlla Hébert, a lawyer born with one arm and malformed limbs is one of three New Brunswickers still fighting in court to be recognized as victims of thalidomide. 3:44

“They said, ‘Well if the drug was still on the shelves after five years that we pulled it off the market, it should have been expired.’ And then they added nine months for the birth of the child,” Hébert said.

Anyone born after Dec. 21, 1967, will not be considered for compensation in this latest program. Hébert was born five weeks too late, on Jan. 31, 1968.

“It’s the most ridiculous thing I’ve ever seen but I’m not surprised,” she said. “We supposedly die about 10 years to 15 years younger of what we are supposed to. They’re just playing with time.”

Quest for closure, compensation

“We always miss the boat,” said Richard.

For him, the compensation would “help immensely,” but more important would be to finally be recognized as a victim.

“I know everyone wants something from the government,” he said. “We didn’t ask for that pill to be introduced in Canada, but we had to deal with the consequence.”

Richard understands the fact that his birthday also falls outside of the eligible dates is a hurdle, but he hopes it won’t be insurmountable.


Richard, seen here with his wife and two daughters, says being recognized as a victim of thalidomide would give him some closure. He says victims have suffered their entire lives because Canada allowed the drug to be sold. (Submitted by Paul Richard)

He is calling on the Canadian government to consider what life was like back in the 1960s in rural New Brunswick. It was a time when doctors handed out medication, and no one threw anything away.

“All those medications could have stayed in a medicine cabinet for a few years and when they needed it, they would take it.”

Like Hébert, he worries his body will continue to deteriorate, and he will need more support as he gets older.

Judge urges government to reconsider

The legal battle for Hébert and Richard continues. This month they appealed a ruling by Federal Court Justice Michael Phelan that would effectively close the door to them ever receiving any compensation.

Lawyer Alyssa Tomkins, a partner with Caza Saikaley, is representing Hébert and Richard, along with another New Brunswicker, pro bono.

She explained the 167 people who were refused government compensation in 2015 had launched a class-action lawsuit, which was settled in May.


Lawyer Alyssa Tomkins is appealing a court ruling that settles a class action lawsuit by thalidomide survivors. The settlement order, which is tied to a 2019 compensation program, would leave Hébert and Richard out. (http://www.plaideurs.ca)

The settlement order applies to all members of the suit, including Hébert and Richard, and means they have to accept the new 2019 program, even though it excludes them and 40 others based on their birth dates.

Tomkins is arguing that based on the negative or “deleterious” effects of the settlement on so many class members, the order should be set aside.

“Effectively, the settlement provides little benefit, we’ve alleged, to class members within the birth date framework. And yet it’s devastating to those outside it,” she said.

Let’s work with integrity and let’s show our hearts. We may have done mistakes in the past but it’s never too late to show compassion.– Noëlla Hébert

Tomkins worries that if the settlement holds up, it will make it “extremely difficult” for victims to ever get the government aid they are entitled to.

In his ruling, Phelan also raised concern about the birth date parameters set by the 2019 compensation program and said there was a “less than clear” explanation from government as to why it was necessary.

“Canada’s explanation for its rigid approach, while coldly scientific, lacked the compassion for the individual which the government espoused,” he wrote.


In his May decision, Justice Michael Phelan encourages the government of Canada to reconsider birth date requirements that exclude at least 42 people from a new compensation program for thalidomide survivors. (Federal Court of Canada)

“Some of the individuals failed to qualify by a matter of a few weeks — their stories were tragic and compelling. Class counsel recognized the problem but on this issue Canada was intractable.”

Phelan said if it was within the power of the court, he would have struck out the date parameters.

“Regrettably, the court is powerless to do anything about this issue, other than to encourage a compassionate reconsideration.”

Phelan goes on to acknowledge that class members are advancing in age and have increasing requirements because of their disabilities.

“Time is not their friend, if not yet their enemy.”

Despite this setback, Hébert is undeterred and ever hopeful that the many politicians she has met with over the years will reconsider and put an end to this “nonsense.”

“It’s never too late. We can say, ‘The past was the past. Let’s talk with integrity now. Let’s work with integrity and let’s show our hearts.’ We may have done mistakes in the past but it’s never too late to show compassion.”

‘I am a hero of history’

Hébert’s sense of humour is still in tact as she talks about some of the accommodations she needs to continue to live in her own home.

“I don’t have a ramp to bring my scooter with me in my truck. I don’t have a ramp outside my door. I don’t have the [modified] steering wheel because my steering wheel is too heavy for me to turn on my SUV.”

“It costs an arm and a leg — which I don’t have,” she jokes.


Compensation would allow Hébert to afford accommodations such as a ramp for her home, a ramp to be able to transport her scooter in her truck and an adaptive device to allow her to continue to drive. (Vanessa Blanch/CBC)

She knows the body she was born with will never allow her to do what her spirit would like, but she still looks forward to a day with simple accommodations — raised garden beds, for instance, so she can grow plants on her deck.

“It’s about the recognition of being who I am,” she said.

“I am a hero of history. I’ve conquered the world with a not normal body and instead of looking at us with eyes of pity, they should say to us, ‘Oh my God — you’re champions. You should have a medal.'”

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CBC | Health News

‘Generation-long epidemic’: Compensation funds running out as 9/11-related illnesses rise

Thomas Wilson rarely left Ground Zero in the dizzying month following the attacks of September 11, 2001.

A New York City police sergeant at the time, Wilson spent his days sifting through the tangled, charred rubble of the World Trade Centre. When night came, he slept for a few hours in one of the makeshift dormitories that sprung up around the site — a fierce sense of duty prevented him from being anywhere else.

“A job had to be done,” he said. “It was the right thing to do.”

Wilson counted himself lucky for escaping that day when so many others didn’t. But seven years later, 9/11 caught up with him. He was diagnosed with a rare tongue, and later, skin cancer—both of which doctors said were linked to his time spent at Ground Zero.

Cars smoulder in the street as the destroyed World Trade Center burns in New York on Sept. 11, 2001. (Peter Morgan/Reuters)

Wilson, a father of five, was shocked but not entirely surprised. He remembered the lack of proper protective gear and the metallic odour of the toxic brew of carcinogens that hovered over what he, and other first responders, dubbed “The Pile.”

“It just perforated everything,” he said.

Wilson is one of more than 11,000 first responders and survivors who’ve been diagnosed with a 9/11-related cancer, according to the World Trade Centre Health program, part of the U.S. government’s Centers for Disease Control and Prevention (CDC). 

In 2011, about 60,000 people were registered as having 9/11-related illnesses. By December 2018, that number was higher than 93,000, according to WTC Health Program.

The growing number has put crippling pressure on the September 11 Victim Compensation fund, set up by the U.S. government to provide financial aid for the sick and the families of those who’ve died from their illnesses.

Former NYPD sergeant Thomas Wilson was diagnosed with tongue and skin cancer related to his service at Ground Zero following Sept. 11, 2001. (Ellen Mauro/CBC News )

The fund is running out of money faster than expected and, to ration what’s left, future payments are set to be cut by up to 70 per cent — a decrease that could mean undue financial stress, in addition to life-changing health challenges, for people impacted by that awful day.

“I am painfully aware of the inequity of this situation,” the administrator of the fund, Rupa Bhattacharyya said in the fall. “But the stark reality of the data leaves me no choice.”

Before the cuts were announced, compensation rates for people diagnosed with 9/11-related ailments ranged from $ 200,000 to $ 340,000 US, depending on the type of illness and its severity.

In order to be eligible for compensation, first responders must have been working at Ground Zero and then diagnosed with one of 65 cancers doctors in the WTC program have linked to the aftermath of 9/11.

‘This is a generation-long epidemic’

Bhattacharyya’s announcement prompted a group of 9/11 first responders and their families to travel to Capitol Hill earlier this month to pressure Congress for a fix.

They appeared with Kirsten Gillibrand, a New York Senator and Democratic presidential candidate, as she announced a bipartisan bill that would make the fund — set to expire in 2020 — permanent.

Doing so would likely render the compensation cuts unnecessary and protect those diagnosed with 9/11-related illnesses in the future. But the bill currently does not have enough votes to pass.

“This is a no-brainer,” said John Feal, a leading advocate for 9/11 first responders, whose foot was crushed by a steel beam as he removed debris from Ground Zero.

“This is an ongoing thing; this is a generation-long epidemic.”

John Feal, whose foot was crushed by a steel beam while he was working at Ground Zero, stands in front of the future site of a memorial for those who’ve died from 9/11-related illness. (Ellen Mauro/CBC News )

And it’s only going to get worse, said doctors treating people with 9/11-related conditions.

Some doctors estimate that more people will eventually die of 9/11-related conditions than the nearly 3,000 people who died on the day itself.

Many of the cancers linked to breathing in toxic air potentially take decades to develop, meaning the scope of the crisis could grow exponentially in the coming years. 

“It’s a huge problem,” said Dr. Benjamin Luft, a physician at Stony Brook University Hospital who works with the WTC Health program. “Overall, the amount of suffering that occurs post-trauma far exceeds the amount of trauma that occurs at the time — even though that trauma itself was enormous.”

‘We’re coming down hat in hand’

The dire predictions make Feal’s work all the more important to him. He’s organized lobbying trips to Washington every time the fund has come under threat since it was first created in 2011.

In 2015, a similar push to make it permanent was quashed by Republican lawmakers concerned over costs.

Instead, Congress gave the fund $ 7.3 billion US with the 2020 expiration date. Only about $ 2 billion US remains, with thousands of claims waiting to be processed and more people registering everyday.

“We’re coming down hat in hand,” said Wilson. “We’re begging for our brothers and sisters who are too sick to go and lobby on their own.”

A firefighter walks amid rubble near the base of the destroyed World Trade Center in New York on Sept. 11, 2001. (Peter Morgan/Reuters)

And with each trip, the frustration grows. Wilson, who is still an active duty police officer, said it’s insulting to meet lawmakers who pay lipservice to remembering the attacks but refuse to actually take care of those who were caught in the aftermath of that day.

“If hypocrisy was a crime in Congress, I’d be locking people up,” he said.

It’s a sentiment echoed by fellow first responder, Charles Sullivan, a former NYPD officer. In 2015, Sullivan was diagnosed with a rare form of lymphoma doctors said was related to working in Lower Manhattan following the attack.

“Some people might say we’re tired of hearing about 9/11, let it go,” he said. “I’d love to let it go: if people weren’t dying everyday.”

The gift that keeps on taking

It’s a reality that Bridget Gormley and Robert Tilearcio Jr. know all too well. Their fathers were New York City firefighters who died prematurely after being diagnosed with 9/11-related cancers. 

Tilearcio’s father travelled to Capitol Hill to lobby Congress in the years before he died of brain cancer in 2017 at age 58. Now Tilearcio Jr. goes in his place.

Bridget Gormley and Robert Tilearcio Jr. lost their fathers, who were firefighters, to 9/11-related cancer. They both work at a law firm that advocates for those living with illnesses connected to September 11. (Ellen Mauro/CBC News )

“9/11 is the gift that keeps on taking,” he said. “Hopefully those angels watching over us can maybe get into the heads of the people who don’t want to vote yes.”

Both Tilearcio and Gormley work at law firm Barasch & McGarry, located just minutes from where the Twin Towers once stood. The firm specializes in advocating for those with 9/11-related illnesses.

“I lost my father and I’m not going to get him back,” Gormley said. “I’ve come to terms with that, but now I feel like I’m part of something bigger than me. It’s cathartic almost.”

Partner Michael Barasch represented both of their fathers before they died. On 9/11, he watched from his office window as the South Tower collapsed.

“I was like a deer in highlights,” he said. “We are some of the same people that you’ve seen in those famous photographs covered in dust and ash, running up Broadway.”

Lawyer Michael Barasch watched the South Tower of the World Trade Collapse collapse from his office window. He’s dedicated his career to helping those with 9/11-related illness. (Ellen Mauro/CBC News )

Like Feal, Barasch has made many trips to Washington on his clients’ behalf.

“In many cases, it’s the difference between keeping your house and not keeping your house,” he said of the compensation cuts. “Congress just didn’t set aside enough money for all the people getting sick.”

Gormley said one of the hardest parts of losing her father was thinking he survived 9/11 — that her family had dodged a terrible fate — only for that day to change his life so many years later. 

“You have survivors who are turning into victims,” she said. “Everyone’s looking over their shoulder wondering what’s going to happen next.”

Fear of the future

Rob Serra lives with that anxiety everyday.

He was 21 years old on 9/11, his first day on the job as an New York firefighter. His health problems began almost immediately as he suffered with an uncontrollable nosebleed while working at Ground Zero.

Other issues followed. Nasal polyps had to be surgically removed, respiratory problems arose, and nerve damage means he sometimes relies on a wheelchair. His downward health spiral forced Serra to retire from the FDNY at just 33.

“I feel like the sand is moving a little quicker through the hourglass,” he said.

Serra now spends his time advocating for the fund. Compared to those waiting for their claims to be processed or the yet-to-be diagnosed, Serra said he’s lucky. He received his compensation before the cuts were announced — money to help take care of his young children now that he can no longer work.   

But it does little to ease his fear — a fear that stalks so many of 9/11’s first responders — that he won’t get to see his kids grow up.

“I’m hoping to see them go to high school but I don’t know,” he said. “I can’t imagine that I got all these other illnesses so early on and I’m not going to get cancer.”

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How workers compensation is being dragged into the world of medical marijuana

As Melissa Ellsworth drops several grams of dried cannabis into her Magical Butter machine to be ground into oil, she pauses to reflect on how long it took the Workers' Compensation Board of Nova Scotia to start paying for her medical marijuana.

Five years and one tribunal appeal later, she was finally approved in January 2018. The tribunal decision stated there was "sufficient evidence to conclude that the worker is entitled to medical aid in the form of medical marijuana." 

She says that ruling saved her life.

"I can function every day like a normal human being instead of being crippled up in pain," said Ellsworth. "I went from 26 pills a day to cannabis." 

For almost a decade, Ellsworth was on a mixture of opioids, benzodiazepines and sedatives. 

She suffers from chronic pain in her neck, head, jaw and shoulders after being struck in the head with a chair while working as a licensed practical nurse in 2006 at the Nova Scotia Hospital, a psychiatric facility in Dartmouth, N.S. She has been off work since 2010.

Several grams of cannabis are dropped into a Magical Butter machine to make oil. Ellsworth uses the liquid in her food and coffee as well as creams and bath bombs. (Craig Paisley/CBC)

Her tribunal victory comes as workers compensation boards across the country are being forced to revise their restrictive policies around medical cannabis as more patients look for forms of pain relief other than opioids.

Last year, New Brunswick was the first province to introduce cannabis guidelines. It was followed by P.E.I. and Ontario. Nova Scotia is expected to release its guidelines in early April.

Number of claims

But getting cannabis coverage approved through a WCB still isn't an easy process in any province.

Ellsworth is one of 10 workers in Nova Scotia who have qualified. P.E.I. and Alberta have similar numbers. Of the provinces that disclose how many workers are compensated for medical marijuana, New Brunswick has the highest number of claims at 71.

Half of the provincial bodies would not say how many cannabis prescriptions are paid. In all regions, coverage is reviewed on a case-by-case basis. 

In comparison, Veterans Affairs Canada approved more than 7,000 veterans at a cost of $ 50 million in 2017-18. 

Cannabis guidelines

In Nova Scotia, the chief medical officer for the WCB admits the position on cannabis has traditionally been a firm "no." But that has changed in the last year, according to Dr. Manoj Vohra.

"We're starting to see that more evidence is coming, more workers are asking for it and so now we're starting to develop criteria on guidelines," he said.

Vohra said the medical evidence shows that cannabis, especially cannabidiol (CBD) — the non-impairing compound — can help people with chronic illnesses such as cancer and HIV, as well as those suffering from neuropathic pain. 

"If cannabis does help them in those areas where there is evidence, then we're more than open to trying to see how we can do that," he said. "The challenge always comes in with harm. There's not enough clinical trials that actually go through. What are the side-effects?"

Dr. Manoj Vohra, chief medical officer for the Workers' Compensation Board of Nova Scotia, says there is a reluctance to overprescribe a medication such as cannabis that hasn't been fully researched. He says doctors are especially wary after witnessing the fallout from the ongoing opioid epidemic. (Robert Short/CBC)

Dr. Vohra said there is a collective fear among his colleagues about overprescribing a medication that hasn't been fully researched. He points to the ongoing opioid epidemic as a prime example.

"What's happened 10 to 15 years down the road is we've realized that there's harm that occurs," Vohra said. "And so we want to make sure we don't repeat those mistakes from the past and that we use it and understand what are the risks, what are the contraindications to using it."

In February 2017, 1,543 workers had the cost of their opioid prescriptions covered by the WCB in Nova Scotia. In February 2019, that number dropped to 1,315 workers.

Long overdue

Dr. Mary Lynch, a pain specialist and cannabis researcher in Halifax, said the introduction of cannabis guidelines for injured workers is "long overdue."

"If first- and second-line treatments aren't working, then we will sometimes recommend a medical cannabinoid, depending on the patient's specific presentation," Lynch said. 

"And for those who do benefit, we have run into difficulties with the workers compensation board agreeing to cover the cost."

Lynch is a founding member of the cannabis research startup Panag Pharma Inc., which she and other academic researchers incorporated in 2014 to access research grants.

She hopes Nova Scotia's new guidelines will give weight to a doctor's prescription.

"I'm hoping that the policy will be written in a way that as long as a physician has recommended it, the access will be reasonable, just like it is with any other prescription medication."

As it stands, only Quebec depends on medical advice from the worker's doctor. All other provinces, including ones with guidelines, have their own team of doctors to evaluate claims from injured workers.

Continuous struggle

For Ellsworth, the struggle continues even though she is one of the few who have successfully lobbied for medical marijuana coverage in Nova Scotia.

She was originally prescribed four grams per day. Last August, her family doctor increased her dose to five grams, but that has not been approved by WCB.

"My only job as an injured worker is to take the best care of myself to prevent further injury. I'm trying to do everything I can possible by avoiding addictive medications and everything else. And they're fighting me. They're making it very hard to do," said Ellsworth.

She has appealed her claim to have that extra gram covered, knowing that it will likely lead to another tribunal — a process she has been through eight times for various issues over the years.

"I mean, I've won eight tribunals. How many more do I have to win?" she said.

"Every time I go through a tribunal, I have to live through all that again. And I will be honest, between my employer, workers compensation and everything … it was a nightmare. An absolute nightmare that I would rather not relive again."

Varying doses

Guidelines developed by New Brunswick, P.E.I. and Ontario have set a maximum dose of three grams per day. While Lynch agrees that is an appropriate limit, she also believes some patients may need more.

"You do need to take each of these things on an individual basis, and these days many people are using topical products where you put the agent into a cream, and in that case you do need access to a bit more of the product," the pain specialist said.

The Workers' Compensation Board of Nova Scotia pays for 10 cannabis prescriptions. Of the provinces that disclosed how many workers are compensated for medical marijuana, New Brunswick has the highest number of claims at 71. (Robert Short/CBC)

When it comes to THC levels, the Maritimes set a limit of no higher than one per cent. Ontario allows up to nine per cent. THC is reported to have therapeutic effects but also to be chiefly responsible for the psychotropic effects of cannabis, according to the Workplace Safety and Insurance Board of Ontario.

"I know that each province has to come up with their own answers," Lynch said. 

"One would hope, though, that things will move forward within a reasonable length of time [and] perhaps the wheel doesn't need to be reinvented in every province."

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Groundbreaking workers' compensation case makes link between benzene and cancer

It's been nearly a decade since he stepped into a printing plant, but Mitch LaPrade still remembers the distinct smell — a smell so strong it saturated his clothes, his hair, even his skin.

"It was a heavy smell of ink, lots of ink — you might call it a tar smell," says LaPrade, who lives in Long Sault, Ont. "I'd have to come home through the garage, take off my clothes and go straight in the shower. The clothes stayed in the garage."

In 1986, LaPrade took a job as a pre-press technologist, preparing printing plates. With only a high school diploma in hand, this job was his ticket to a trade certification and a steady paycheque.

But then he started to have difficulty breathing. And then in 2005 came his diagnosis: chronic lymphocytic leukemia (CLL).

At 44, he was given 15 years to live.

LaPrade says he was flabbergasted and immediately started asking questions.

"My wife and I were always trying to figure out, where do you get that? We didn't even know what leukemia was."

Then his doctor raised flags about benzene, a chemical in the solvents he'd used to clean the presses. It was a known carcinogen, but LaPrade says he'd never been provided with protective gear like gloves or masks. Once he realized the chemical could be behind his illness, he purchased his own mask to wear, often putting up with laughter from coworkers and managers. 

In 2006, LaPrade decided to submit a workers compensation claim to Ontario's Workplace Safety and Insurance Board (WSIB). What ensued was an 11-year battle that he and his wife fought to prove his cancer originated in the workplace.

Although he was ultimately successful in landing a victory that could change how other sick workers are compensated, LaPrade might not have had to fight for those benefits had he been a firefighter. Firefighters who are diagnosed with the same cancer are covered under a policy known as a presumptive regulation, an automatic acknowledgement that their workplace made them sick.

Denial after denial: 'Inadequate evidence'

LaPrade's case file includes air quality assessments confirming he'd had "significant" exposure to benzene, possibly reaching "moderate to high" levels.

Still adjudicators would not accept more than a dozen medical studies submitted by him and his team, making the link between cancer and benzene. WSIB responses repeatedly stated that "exposure to benzene and other products would not have caused the chronic lymphocytic leukemia … " and that the scientific evidence was "inconclusive."

​But, in 2007, while case managers were rejecting LaPrade's claim, the Ontario government broadened its Workplace Safety and Insurance Act to include special firefighter protections. The new regulation states that, if firefighters served at least 10 years before being diagnosed with certain types of cancer or leukemia — including CLL — their disease is presumed to have been caused by their work.

LaPrade, right, and wife, Peggy Bigelow, are seen on vacation in Quebec City in 1991. When he first got the job as a pre-press technologist at a printing company in Long Sault, Ont., back in 1986, it was his ticket to a steady paycheque.(LaPrade Family photo)

Dr. Brian Gibson, a public health professor at the University of Toronto, was one of the doctors who submitted reports in support of LaPrade's case. He questions whether there is an inconsistent standard — the studies deemed inconclusive by WSIB in LaPrade's case had been accepted as scientific evidence for the firefighter policy.

In LaPrade's case, the WSIB argued that firefighters are exposed to a lot of other toxins on the job. 

"But if you actually take a look at it," Gibson told CBC in an interview, "the only one of those chemicals that would cause the increased risk of chronic lymphocytic leukemia was benzene."

In a statement provided to CBC News, the WSIB also said that firefighters are compensated based on their diagnosis and their length of service — not based on their exposure to chemicals like benzene.

Last month, the Ontario government announced it would review which cancers are considered work related and how compensation is distributed. In an email statement to CBC, the Minister of Labour's office said the review will include all forms of compensation, including industry specific regulations like the firefighter policy.

"The minister is constantly looking at ways to improve operations and ways of ensuring that the system works properly for workers and their families," the statement says.

LaPrade says he feels like he was held to a double standard.

"It is discrimination," he says. "They single out different occupations. That's the response from them. You're not in that occupation so we cannot treat you as a firefighter."

375,000 workers exposed to benzene

Jim Brophy, a University of Windsor adjunct professor, has studied occupational disease for more than two decades and his work led to the development of the firefighters' regulation.

He says he supports the firefighter coverage but has always been frustrated that the policy never was expanded to protect other exposed workers.

I mean that's ludicrous. Benzene-exposed populations don't get more or less risk because of their job title– Jim Brophy , occupational disease expert

"I mean that's ludicrous. Benzene-exposed populations don't get more or less risk because of their job title," Brophy said.

"We know from study after study, for instance, that refinery workers are exposed on a daily basis. We know auto mechanics are exposed. We know people working in the rubber industry are exposed. And we know autoworkers in the plastics industry that make most of the components of our cars now are exposed."

An estimated 375,000 Canadian workers are currently exposed to benzene, according to CAREX, a carcinogen surveillance program.

 The WSIB told CBC that it has received 66 claims related to benzene and leukemia since 2006. Eleven of these claims have been approved, none under the firefighter policy.

The Board could not specify how many claims were specific to chronic lymphocytic leukemia, but Statistics Canada data shows that since 2005, at least 21,800 Canadians have been diagnosed with the disease.  

Most firefighter claims rubber stamped within months

Ottley worked as a WSIB advocate for the food manufacturing industry before becoming an occupational health and safety chair for the Fire Fighters Association of Ontario.. He says the battle that workers go through to link leukemia to benzene exposure is unnecessary.

"We have to count tombstones before we get any action out of WSIB," he said.

"You should not have to prove it scientifically," he says of LaPrade's case. "If he worked around benzene and it's been proven, well that's a given."  

Ottley says most of the claims he has worked on for firefighters have been approved as long as the firefighter has fulfilled the minimum service requirements and there are no other contributing factors to the disease.

LaPrade waits at the hospital with his wife, Peggy Bigelow.(CBC)

In his experience, decisions are generally granted within two to three months.

"If it's a rubber stamp, and no one's arguing the specifics, it's quick," he says.

'Now somebody believes us'

LaPrade fought his case through to the highest level of Ontario's worker's compensation system. Last November, the Workplace Safety and Insurance Appeals Tribunal ruled in his favour, declaring that his exposure to benzene made a "significant contribution" to his cancer.

"All this fighting that we've done has paid off," says LaPrade, "because now somebody believes us."

His lawyer, Bernadette Clement, says his case could have far-reaching impact for other at-risk workers who can now use the publicly available Tribunal decision as new evidence to support their own cases.

This case is about bringing awareness to people. If they get this kind of diagnosis they should be thinking about the work that they did and whether there was a connection–  Bernadette Clement, lawyer

"This case is about bringing awareness to people," says Clement, executive director of the Roy McMurtry Legal Clinic in Cornwall, Ontario. "If they get this kind of diagnosis they should be thinking about the work that they did and whether there was a connection."

The Tribunal approved LaPrade's claim last November, but he and his wife are still waiting for the WSIB to evaluate how much money he will receive in compensation.

At 57 years old with a terminal disease, LaPrade knows he's running out of time. He hasn't worked in years and he and his wife have put their family home on the market because he isn't well enough to keep it up. For his remaining time his main focus is helping other sick workers get their cases re-evaluated.

"I'm not the first and I won't be the last," he says. "But hopefully this will wake something up in that industry.''

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Thalidomide disaster: background to the compensation debate

At a press conference in Ottawa on Tuesday, a new organization, the Thalidomide Survivors’ Task Group, said that at a meeting on Oct. 19, federal disabilities minister Kent Hehr “managed to insult and degrade us repeatedly.”

While those kinds of comments are sure to get the media’s attention — and they certainly did —  the group is demanding the federal government double the compensation it agreed to pay in 2015, pointing today to “the government’s negligence.”

A documentary broadcast on CBC’s Documentary Channel earlier this year, No Limits, says thalidomide “was the worst drug disaster in history,” while in 2014 the Guardian called it a “pharmaceutical outrage.”

What is thalidomide?

Thalidomide was first marketed in West Germany in 1957 by the Chemie Grunenthal company. The company promoted it as effective against a number of conditions but its primary use was as a sedative.

Under the brand name Contergan, Grunenthal promoted the “absolute non-toxicity” and “safeness” of the drug.

Thalidomide was soon given to pregnant women for nausea and morning sickness. In some countries it could be purchased without a prescription.

Where was thalidomide available?

Thalidomide was available in 46 countries, including Canada.

When was thalidomide sold in Canada?

Canadian doctors began to receive samples of thalidomide in 1959 but sales did not begin until April 1961, under the brand names Kevadon and Talimol. The licensee was the Merrell Company, based in the United States.

By April 1961, there were already warnings about thalidomide and malformed babies, as well as nerve damage in adults.

Thalidomide Survivors 20171205

Members of the Thalidomide Survivors’ Task Group hold a news conference on Parliament Hill, in Ottawa, Tuesday, December 5, 2017. Clockwise from left are Fiona Sampson, Mary Ryder, Alexandra Niblock and Lee Ann Dalling. (Fred Chartrand/Canadian Press)

What happened in the U.S.?

Thalidomide was not sold in the U.S. until 1998 (for treatment of complications related to leprosy, and in 2006 for multiple myeloma).

A Canadian pharmacologist, Frances Oldham, is credited for blocking thalidomide approval in the U.S. when it was promoted as a wonder drug elsewhere. As an employee at the U.S. Food and Drug Administration, Oldham wasn’t convinced the drug was safe. 

Oldham died in London, Ont., in 2015.

Canadian thalidomide ‘hero’ dies at 1011:49

U.S. doctors did hand out sample tablets and at least 17 children were born in the U.S. with thalidomide-induced malformations.

What were the impairments for babies whose mothers had taken thalidomide while pregnant?

According to the U.K.’s Ministry of Health, children could “suffer reduction deficiencies of the limbs, malformations of the eyes, ears and deafness, defects of the heart and kidneys and malformations of the alimentary system.”

Phocomelia is the most severe impairment, the U.K.’s Thalidomide Society says, “a condition where the long bones of some or all limbs are misshapen and where the hands and feet, which can be either mostly fully-formed, malformed or rudimentary, arise almost on the trunk.”

The Society lists a wide spectrum of limb disabilities caused by the drug.

“The drug harmed the developing foetus only if taken in the first three months of pregnancy,” according to the Society.

When was thalidomide withdrawn?

The first thalidomide-affected baby was born in 1956, to a Grunenthal employee in West Germany, before the drug was marketed.

By 1961, Australian obstetrician William McBride had informed the Australian distributor that he had evidence thalidomide could lead to malformed babies and published a letter in the Lancet, a leading medical publication. 

There was also increasing evidence in Germany in 1961 that thalidomide was responsible for a spike in newborns’ limb malformations. 

By October, Grunenthal had internal evidence their drug was responsible for the malformations but continued to tell doctors thalidomide was safe.

On Nov. 27, Grunenthal withdrew the drug from the West German market. A few days later it was also off the market in the U.K. and Australia.

Thalidomide survivors

An emotional Mercedes Benegbi, a thalidomide survivor and executive director of the Thalidomide Victims Association of Canada, celebrates on Parliament Hill after the House of Commons voted to compensate survivors of thalidomide in December 2014. (Fred Chartrand/Canadian Press)

In Canada the drug remained on the market until March 1962.

Thalidomide was available in Spain until 1965.

What are the numbers?

Worldwide, an estimated 24,000 babies were born with thalidomide-induced malformations. An additional 123,000 stillbirths and miscarriages were due to thalidomide, according to conservative estimates.

In Canada, the drug was responsible for over 100 children born with severe defects.

In West Germany, that number was about 6,000, and in the U.K., 2,000.

What compensation have Canadian victims received?

In the 1990s, the federal government distributed lump-sum payments of between $ 52,000 and $ 82,000 to 109 thalidomide victims. 

In 2014, finding that compensation insufficient to cover their medical needs, the Thalidomide Victims Association of Canada, then representing about 120 survivors, requested the federal government provide additional $ 250,000 lump-sum payments and annual payments of $ 75,000 to $ 150,000. 

In 2015, the federal government announced a $ 125,000 lump-sum payment to thalidomide survivors and an annual pension from the government of up to $ 100,000.

Thalidomide Survivors say they were degraded by the Disabilities Minister1:57

Kent Hehr speaks with reporters7:05

‘We were all stunned’7:11

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'Get out of here! You've reached your level': Former nuclear plant workers fight for radiation compensation

Al Donahue still remembers the frantic day the alarm went off at Atomic Energy Canada Ltd. in Chalk River, Ont.

“As soon as I heard the alarm, I was with a group of welders and I took them out to the camp area,” recalled Donahue, now 88 years old and living in nearby Pembroke. “Then I went back in and got the people out.”

On May 23, 1958, the National Research Universal (or NRU) nuclear reactor suffered a serious mechanical failure. It overheated, ruptured and a fire ensued, according to official reports.

A sign inside Atomic Energy Canada c. 1958

A sign from inside Atomic Energy Canada Ltd at Chalk River, Ont., from the 1950s. (CBC Archives)

The NRU reactor was state of the art, worth millions and had the potential of causing catastrophic radiation contamination if something went wrong.

Staff volunteered to decontaminate site

Hearing the alarm meant all hands on deck. About 300 AECL staff volunteered to decontaminate the site over the next 10 days.

“We stayed with it right from the day of the accident until the cleanup was finished,” said Donahue, who worked in the AECL purchasing office.

chalk-river-cp-4008954

Atomic Energy Canada Ltd., located in Chalk River, Ont., was the site of two serious nuclear incidents, one in 1952 and another in 1958. (Canadian Press)

George Kiely, who worked in metallurgy at AECL for 31 years, also volunteered.

Kiely remembers trying to hold on to a big, awkward vacuum with gloved hands while wearing a full protective suit and breathing through a mask as he cleared debris from the reactor.

A supervisor told him what to expect.

“These little particles are going to look like pellets, and the idea is to try to pick up as many of those pellets as you can. And you won’t be able to stay in there very long — and we’ll keep track of you,” Kiely recalled being told.

An accident at National Research Universal reactor0:42

Just 10 minutes of work

Kiely and the other workers had to work fast. Their radiation exposure was being closely monitored.

In just 10 minutes, Kiely reached the limit.

“You’re just getting started and then the guys are, ‘Come on! Get out of here! You’ve reached your level.’ So I dropped it, went out and undressed.”

Workers took turns with the vaccuum until they’d exhausted the radiation exposure of each willing staff member at AECL.

Then the Canadian military arrived.

Inside AECL

A look inside the AECL labs at Chalk River in the 1950s. (CBC Archives )

Military called in to help

Canadian Forces members reached Chalk River on June 4, 1958.

Fifty years later, Kiely found out those officers and soldiers were getting paid compensation for their 10 minutes under the reactor. Personnel who had participated in the decontamination at Chalk River in 1958, as well as a previous incident in 1952, each received $ 24,000 compensation in 2008.

The money came through the Atomic Veterans Recognition Program (AVRP), developed by the Department of National Defence. According to a 2016 Senate report: “Payment by the AVRP does not seem to be dependent on developing an illness or health problem linked to nuclear radiation; participation alone warrants compensation.”

But there was no packet of compensation money for AECL workers like Donahue or Kiely.

The compensation for military personnel left Kiely bewildered. “We did it first. We were the ones to do it, and then the military came in as a last resort,” he said.

Campaign begins

In 2009, Donahue, Kiely and Martin Habraken — a friend of Camille Charette, a deceased AECL employee who helped clean the reactor — launched a letter writing campaign in 2009.​

“I had 37 people contact me when I first started trying to obtain justice,” Donahue said. “Out of 37, I counted 16 that are already gone.”

Gail MacDonald

Gail MacDonald’s dad, Don Kilby, worked at AECL in 1958 and was exposed to radiation during the subsequent cleanup. He died in 2009. (Julie Ireton, CBC )

Don Kilby was among them. Like Donahue, he worked in the company store and suited up when the call went out in 1958. 

“Dad would tell us about having to go in, only being allowed in there for short periods of time, minutes, then coming out and having these thorough showers,” said Gail MacDonald, Kilby’s daughter.

He died in 2009, within two weeks of a leukemia diagnosis.

“The doctor said he’d never, ever seen blood cells explode like Dad’s did,” said MacDonald. “It makes us wonder if it was due to the exposure to the radiation. I know none of us are qualified to say that, but it creates questions in our minds.”

After MacDonald got the “brush off” from federal ministers, she sought out Habraken and the other ex-AECL workers.

A champion emerges

The letter writers reached out to 105 senators. They got one response — from Senator Céline Hervieux-Payette.

Al Donahue and Martin Habraken

Al Donahue and Martin Habraken have been sending letters and reaching out to the last remaining AECL workers for several years. (Julie Ireton, CBC)

She met with Donahue, Kiely and Habraken in 2014.

The senator asked her staff for a report about the 1952 and 1958 incidents, the military’s role and the compensation program. Released in 2016, it concluded: “Efforts should be made to either extend the current compensation program or develop a separate program for the civilians that participated at these events.”

Senator Hervieux-Payette and AECL workers

Senator Céline Hervieux-Payette met with former AECL workers in 2016 in Ottawa. (Senate of Canada)

Hervieux-Payette invited former AECL workers and their advocates to the Senate on March 22, 2016, when she presented a motion to compensate them.

“Finally the motion came up, and it was passed unanimously,” Habracken recalled. “We got applause. They all applauded.”

It looked like the men might finally get the same credit as military members.

Then Hervieux-Payette retired.

Back to the campaign

There aren’t many AECL workers left who worked at the Chalk River facility in the 1950s. Those who remain are starting over with a new government, a new campaign. 

The file is in the hands of Natural Resources Canada. In a statement to CBC News, the department noted: “Employees of Atomic Energy of Canada Limited (AECL) played an important role in the two major clean-up and decontamination efforts at the Chalk River Laboratories during the 1950s.”

The department also noted Hervieux-Payette’s Senate motion for compensation. According to the statement, “At this time, there is no program similar to the AVRP. However, the government continues to give due consideration to the Senate motion.”

For Kiely, it’s not about the money. In fact, he has no idea what he’d do with $ 24,000. “I haven’t thought what I’d do with it,” he said. “The money isn’t really the part. It’s the equality, you know?”

Staff photo 1958

Kilby’s AECL staff photo from 1958. (Submitted by Gail MacDonald)

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