On a mild fall day last October, wearing a floral top under blue scrubs in her new office, Julie Elliott smiled and snapped a photo of herself. She then posted it on a Facebook page dedicated to her work as a nurse and researcher at a breast implant removal clinic in Montreal, Canada. In the bilingual caption of the photo, she wrote: “Having a great day meeting patients 🥰 And you? What do you do to fuel your passion?”
A 53-year-old former security specialist, Elliott describes herself as a survivor of breast implant disease.
Elliott received silicone breast implants in 2008. Shortly after the implants, she began suffering from autoimmune diseases that attacked her thyroid and esophagus. Ten years later, when she learned that the tissue surrounding her heart was inflamed, she decided to have her implants removed, fearing that her health problems might be related to possible silicone leakage.
The explant surgery was a turning point for Elliott. She says she has been “permanently affected” by the implants, but many of her symptoms have subsided since they were removed. An analysis of the products later showed that the outer shell had degraded over time and that one had a tiny tear.
I understand. I’ve been there, I’m still there.
— Julie Elliott, breast implant disease survivor, now nurse and advocate.
Through advocacy work for groups such as the Breast Implant Safety Alliance and the French-Canadian social media support group Maladie des implants mammaires, which she founded, Elliott now works with other survivors to raise awareness about the complications related to implants.
“I love working with these women,” Elliott said. “They’re so involved, they’re so dedicated. Our purpose in life is to make things better.”
Elliott has also become a point of reference for French-speaking patients in Quebec and abroad. She said she often receives questions from French women who cannot find support in France.
More than 16 million people worldwide have received breast implants in the past decade.
In 2018, the International Consortium of Investigative Journalists’ Implant Files investigation revealed that thousands of women around the world reported serious illnesses after receiving breast implants. One of the ICIJ’s key findings was that many women suffered from BIA-ALCL cancer and breast implant disease – a condition characterized by fatigue, joint and muscle pain and cognitive decline.
The investigation conducted by ICIJ, in collaboration with 58 media partners worldwide, revealed the failure of global regulators to oversee the then $400 billion medical device industry, including breast implant manufacturers. In reports to US regulators by manufacturers, doctors and others, more than 1.7 million injuries and nearly 83,000 deaths were potentially linked to medical devices in the previous decade, ICIJ found. The scale of the problem is likely even greater because many countries do not monitor or publish data related to incidents involving such devices.
In Canada, three deaths have been linked to BIA-ALCL and 36 have been reported worldwide, according to government reports. The The FDA identified more than 7,400 patient reports with saline or silicone-filled breast implants suffering from symptoms of breast implant disease between 2008 and 2022. There is no similar analysis or statistics for Canada, according to ICIJ partner CBC News.
ICIJ’s reporting partners from more than a dozen countries, including Argentina, Australia, France, India and Lebanon, who investigated risks associated with breast implants found that regulators around the world failed to act despite the evidence that breast implant companies buried evidence of injuries and augmentation in reported cases.
In Canada, breast implant makers Allergan and Mentor, a subsidiary of Johnson & Johnson, failed to warn Canadian regulators about injuries related to their implants for nearly two decades. CBC News reported. Months after the Implant Files investigation exposed the serious health risks associated with this type of product, the two companies quietly dumped nearly 6,000 incident reports into the Health Canada database, in violation of a law requiring manufacturers to report incidents within 30 days , according to CBC News. .
Allergan declined to comment on the findings at the time. Mentor told reporters the company is “transparent and fully compliant with Health Canada regulations in its reporting.”
As women suffering from breast implant-related illnesses have felt let down by their governments, some have formed patient advocacy groups to push regulators for stronger oversight and raise awareness among others.
Elliot is one of them. In 2019, she testified at an FDA hearing that was instrumental in pushing the US agency to strengthen safety requirements for manufacturers and recommended that companies apply a black box warning, the agency’s most stringent notice, to breast implants filled with saline or gel silicone. (Advocates welcomed the new measure, but lamented that it was not mandatory.)
On his website, the The FDA is currently warning that implant-related anaplastic large cell lymphoma and breast implant disease are some of the risks.
Elliott is most active in its home country of Canada, where regulatory response has been slow. Canada is the only country within the G7 group of seven of the world’s advanced economies that does not have a breast implant registry, according to Peter Lennox, past president of the Canadian Society of Plastic Surgeons.
Last May, Elliott joined medical professionals and other patient-turned-advocates at a hearing of government health committee in Ottawa where they urged MPs to create such a registry and monitoring of defective breast implants. They cited example after example of how Canadian regulators had failed patients — proof of the industry’s “undue influence” on policymakers, according to an advocate who was diagnosed with cancer caused by her breast implants.
They will have to deal with me for the rest of their lives.
— Julie Elliott, breast implant disease survivor, now nurse and advocate.
Hundreds of breast cancer survivors who received textured implants as part of their post-mastectomy recovery were never contacted by public health services to discuss potential risks, Elliott told the committee. In 2022, he added, many women in Canada learned from a Facebook group, not the authorities, that Mentor had recalled a type of implant that it later found to be defective.
“Our platforms have literally acted as a registry for our members since 2018 and that they are doing the work that government and public health agencies are not doing,” Elliott told the committee. “It’s an absolutely abnormal situation that puts us in the crosshairs of doctors and surgeons and we’re constantly subject to their consent, both in person and on social media.”
It was partly because she wanted “credibility” that Elliott decided to change careers and become a nurse. In 2020, as her previous employment contract expired and the pandemic made it difficult to find security work, she returned to school.
Now, when she talks to health care providers and doctors about patients’ health complications, they see her as a peer, she told ICIJ during a video call from her home. “They’ll have to deal with me for the rest of their lives,” he added with a smile.
Last month, the panel heard testimony from Elliott and others issued 10 recommendations for health regulators, including setting up a national breast implant register “as soon as possible”, requiring private practices to report adverse events related to the devices and improving the health service’s website to inform people of the risks .
“Repeated calls for action have gone unheeded for decades. action is long overdue,” the panel wrote in its final report.
Since graduating from nursing school this year, Elliott has been working on breast implant disease studies and patient care as a research assistant to Stephen Nicolaidis, a plastic surgeon who specializes in breast implant removal surgeries. A slogan on the center’s website refers to patients whose symptoms were dismissed by surgeons. It says: “It’s NOT in your head…it’s in your chest!”.
As of 2018, Nikolaidis has implanted devices in approximately 900 patients.
Elliott says her personal experience as a survivor helps her connect “empathetically” with the clinic’s patients. “Of course I will talk to you about your symptoms and collect data. But this dynamic is completely different,” he said. “When they tell me, ‘You can’t understand, my body hurts and I’m losing my hair,'” [I can say:] ‘I understand. I’ve been there, I’m still there.”
