On a mild autumn day last October, sporting a floral top under blue scrubs in her new office, Julie Elliott smiled and took a photo of herself. She then posted it on a Facebook page dedicated to her work as a nurse and researcher at a clinic specializing in breast-implant removal in Montreal, Canada. In the bilingual caption for the photo, she wrote: “Spending a great day meeting patients 🥰 And you? What are you doing to fuel your passion?”

A 53-year-old former security specialist, Elliott describes herself as a breast implant illness survivor.

Elliott received silicone breast implants in 2008. Shortly after implantation, 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 issues may be related to a possible silicone leak.

Explantation surgery was a turning point for Elliott. She says she’s been “permanently impacted” by the implants but many of her symptoms have resolved since having them removed. An analysis of the products later showed that the exterior shell had degraded over time and that one had a microscopic tear.

I understand. I’ve been there, I’m still there.

— Julie Elliot, breast implant illness survivor, now-nurse and advocate.

Through advocacy work for groups including the Breast Implant Safety Alliance and the French-Canadian social media support group “Maladie des implants mammaires” (breast implant diseases), which she founded, Elliott now collaborates with other survivors raising awareness about complications associated with the implants.

“I love working with those women,” Elliott said. “They’re so involved, they’re so dedicated. It’s our life purpose to make things better.”

Elliott has also become a reference point for French-speaking patients in Quebec and overseas. She said she often receives inquiries from French women who are unable to find support in France.

More than 16 million people worldwide received breast implants in the last decade.

In 2018, the International Consortium of Investigative Journalists’ Implant Files investigation revealed that thousands of women around the world were reporting serious illnesses after receiving breast implants. One of ICIJ’s key findings was that many women suffered from the BIA-ALCL cancer and breast implant illness — an ailment characterized by fatigue, joint and muscle pain, and cognitive decline.

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The ICIJ-led investigation, in collaboration with 58 media partners worldwide, exposed global regulators’ failure to oversee the then $400 billion medical device industry, including breast implant producers. In reports to U.S. regulators from manufacturers, doctors and others more than 1.7 million injuries and nearly 83,000 deaths were potentially linked to medical devices over the previous decade, ICIJ found. The scale of the problem is likely even bigger because many countries don’t keep track of or publish data related to incidents associated with such devices.

In Canada, three deaths have been linked to BIA-ALCL and 36 have been reported globally, according to government reports. The FDA identified more than 7,400 reports of patients with saline- or silicone-filled breast prostheses suffering from symptoms of breast implant illness between 2008 and 2022. No similar analysis or statistics are available for Canada, according to CBC News, an ICIJ partner.

ICIJ 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 proof of breast implant companies burying evidence of injuries and a surge in reported cases.

In Canada, breast implant manufacturers Allergan and Mentor, a Johnson & Johnson affiliate, failed to warn Canada’s regulators about injuries related to their implants for nearly two decades, CBC News reported. Months after the Implant Files investigation exposed the severe health risks associated with this type of product, the two companies quietly dumped nearly 6,000 incident reports in the Health Canada database, in violation of a law mandating manufacturers report incidents within 30 days, according to CBC News.

Allergan declined to comment on the findings at the time. Mentor told the reporters that the company is “transparent and fully compliant with Health Canada regulations in its reporting.”

As women suffering from illnesses associated with breast implants felt let down by their governments, some created patient advocacy groups to press regulators for stronger oversight and raise awareness with others.

Elliott is one of them. In 2019 she testified at an FDA hearing that played a key role in pushing the U.S. agency to strengthen safety requirements for manufacturers and recommending the companies apply a black box warning, the agency’s most stringent alert, to breast implants filled with saline or silicone gel. (Advocates welcomed the new measure but lamented that it was not mandatory.)

On its website, the FDA currently warns that implant-associated anaplastic large cell lymphoma and breast implant illness are some of the risks.

Elliott is most active in her native Canada, where regulators’ response has lagged. 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, the former president of the Canadian Society of Plastic Surgeons.

Last May, Elliott joined medical professionals and other patients-turned-advocates at a hearing of the government health committee in Ottawa where they urged the parliamentarians to create such a registry and track faulty breast implants. They listed example after example showing how Canadian regulators had failed patients — evidence of the industry’s “undue influence” on policymakers, according to one advocate who was diagnosed with cancer caused by her breast implants.

They’re gonna have to deal with me for the rest of their lives.

— Julie Elliot, breast implant illness survivor, now-nurse and advocate.

Hundreds of breast cancer survivors who received textured implants as part of post-mastectomy reconstruction were never contacted by public health facilities to discuss possible risks, Elliott told the committee. In 2022, she added, many women in Canada learned from a Facebook group, not from authorities, that Mentor had recalled a type of implant that it later found to be faulty.

“Our platforms have literally served as a registry for our members since 2018 and that they do the work that the government and public health agencies are not doing,” Elliott told the committee. “It is an absolutely abnormal situation that puts us in the crosshairs of doctors and surgeons, and we are constantly subjected to their condescension, both in person and on social media.”

It was partly because she wanted “credibility” that Elliott decided to change her career and become a nurse. In 2020, as her previous work contract ended and the pandemic made it difficult to find employment in the security field, she went back to school.

Now, when she talks to healthcare providers and pathologists about patients’ health complications, they consider her a peer, she told ICIJ during a video call from her home. “They’re gonna have to deal with me for the rest of their lives,” she added, smiling.

Last month, the committee that had heard Elliott and others’ testimonies issued 10 recommendations for health regulators, including establishing a national breast implant registry “as soon as possible,” requiring private practices to report adverse events associated with the devices, and improving the health agency’s website to inform people about the risks.

“Repeated calls for action have gone unheeded for decades; action is long overdue,” the committee wrote in its final report.

Since graduating from nursing school this year, Elliott has been working on studies about breast implant illness and patient care as a research assistant to Stephen Nicolaidis, a plastic surgeon who specializes in breast implant removal surgeries. A motto 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 breasts!”.

Since 2018, Nicolaidis has explanted devices from about 900 patients.

Elliottt says her personal experience as a survivor helps her connect with “empathy” with the clinic’s patients. “Of course I’m going to talk to you about your symptoms and collect data. But that dynamic is totally different,” she 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.’”