Evidence of meeting #68 for Health in the 44th Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was information.

A recording is available from Parliament.

On the agenda

MPs speaking

Also speaking

Julie Elliott  Patient Advocate, Breast Implant Safety Alliance
Terri McGregor  Patient Advocate, Breast Implant Safety Alliance
Nancy Pratt  Patient Advocate, Breast Implant Failure and Illness Society Canada

12:40 p.m.

Conservative

Ziad Aboultaif Conservative Edmonton Manning, AB

Thank you.

12:40 p.m.

Liberal

The Chair Liberal Sean Casey

Thank you, Ms. Elliott.

Go ahead, Ms. Brière, please, for five minutes.

12:40 p.m.

Liberal

Élisabeth Brière Liberal Sherbrooke, QC

Thank you, Mr. Chair.

I'd like to congratulate our three witnesses and thank them very much for having been here this afternoon to share their experience with us. It will greatly help us make progress with this file.

I'm going to shift the discussion somewhat. I'd like to hear what you have to say about transgender women, many of whom may well have had implant surgery.

Do you have any data about complications or unfortunate incidents experienced by this group?

12:40 p.m.

Patient Advocate, Breast Implant Safety Alliance

Julie Elliott

My group does not operate as a centre for statistics, but it's fairly representative. I'm talking about my group, as well as other communities working on breast implant diseases and BIA-ALCL in general.

Transgender women are probably the most psychologically ill-treated group of patients, and they also experience the most medical cognitive dissonance. That's because they are women who frequently take hormones to achieve what they are looking for in terms of identity. It involves a medical implant, a foreign body. Any foreign body can have consequences. Transgender women who have breast implants are therefore experiencing systemic symptoms related to the implant surgery, like women who are not transgender.

The problem is that if they ask their health professionals about it, as we have all done, most of the time they will be told that their problem is hormone related. They are told that it's caused by something they did to their body. And yet, transgender women who have decided to have their breast implants removed, had their symptoms resolve after a while, as they do for other women.

I personally don't see any difference between transgender and non-transgender women: with breast implants, they both experience the same systemic problems, and the same cases of breast implant-associated anaplastic large cell lymphoma.

12:45 p.m.

Liberal

Élisabeth Brière Liberal Sherbrooke, QC

Thank you.

Ms. McGregor, would you like to add something?

12:45 p.m.

Patient Advocate, Breast Implant Safety Alliance

Terri McGregor

I just want to add that I am in a global collective of women with BIA-ALCL. Right now, about 250 of us from around the world sit in a private Facebook support group because nobody else wanted us. The breast cancer website said, “Goodbye.” Lymphoma said, “Who are you?” We have two transgender patients. One is a transgender influencer and has been quite public with her story, if you want more information.

12:45 p.m.

Liberal

Élisabeth Brière Liberal Sherbrooke, QC

Thank you.

Ms. Pratt, would you like to add something?

12:45 p.m.

Patient Advocate, Breast Implant Failure and Illness Society Canada

Nancy Pratt

I don't really have anything to add, other than that I have heard there are complications happening and I would imagine that they will have the same complications as anybody.

12:45 p.m.

Liberal

Élisabeth Brière Liberal Sherbrooke, QC

Thank you.

Ms. Elliott, on a French-language CBC program, you said that doctors should give patients a card, but that the card might be lost or in certain instances never issued.

Where do we stand between the card and the introduction of a registry?

12:45 p.m.

Patient Advocate, Breast Implant Safety Alliance

Julie Elliott

I'd like to make sure that I've understood the question. Do you mean that the card would replace the registry or that the registry would replace the card?

12:45 p.m.

Liberal

Élisabeth Brière Liberal Sherbrooke, QC

Yes.

12:45 p.m.

Patient Advocate, Breast Implant Safety Alliance

Julie Elliott

It's easy to lose a card. You could lose it while moving or if you're wallet is stolen. We recommend that people keep it with them in the event of something like an accident. But a document can never replace a registry.

A card can be useful for situations where a file might be destroyed after five years, as is the case in Quebec. The only physical evidence left about the implants is the card. However, a registry would solve all problems pertaining to the card, registration problems, and the destruction of medical records after a certain number of years. The time period before records can be disposed of varies greatly from one province to another. It mustn't be forgotten that when there are breast implants, as I mentioned earlier, if any complications arise that are not postoperative, you don't return to see the surgeon.

Unless there are mechanical complications, women rarely return to see their plastic surgeon. Indeed, five, six or even 10 years might go by. In Quebec, if plastic surgeons have not seen their patients again after five and a half or six years, the files are destroyed. That means there is no more tangible trace of the implant unless the person remembers the manufacturer's name. In such instances, they can call the manufacturer and asked them to find their file. The problem is that patients do not always remember who the manufacturer was. They can often remember whether the implants were saline or silicone, but most of the time they don't remember the external texture or the manufacturer.

12:50 p.m.

Liberal

The Chair Liberal Sean Casey

Thank you, Ms. Elliott.

Mr. Thériault, you have the floor for two and a half minutes.

12:50 p.m.

Bloc

Luc Thériault Bloc Montcalm, QC

Thank you, Mr. Chair.

Dr. Morris felt that unless it was mandatory for plastic surgeons to contribute to the registry, it wouldn't work. He said that there would have to be a high participation rate.

I'd like to clear up the earlier confusion.

I understand that you would like surgeons and manufacturers to be required to participate. Moreover, you were in agreement with the idea that women should be able to opt out. Have I understood properly?

12:50 p.m.

Patient Advocate, Breast Implant Safety Alliance

Terri McGregor

I think we all agree on mandatory, but I don't feel that I'm in a position to say.... Perhaps there is a 1% reason.

Breast implants are a very personal choice, and what I know from most Canadians is that there are people in this room who have acquaintances in their life who have breast implants that you don't know about. Our culture is very private. We do not want to discuss that, so if there is a percentage who don't want to be in, I don't feel that I'm in a position to say that those women don't deserve that choice.

12:50 p.m.

Bloc

Luc Thériault Bloc Montcalm, QC

In fact, earlier on, I was talking more about the right to opt out rather than a requirement to register, that is to say that all women would be registered by default and not that they would have to register in order to participate. The purpose is not to know why they would want to opt out, but to consider all women to have registered, and allow them to opt out for a variety of reasons. My understanding is that you are in favour of this principle.

In view of all the problems you mentioned today, do you think that Health Canada should create a proper consent form containing all of the information, as well as the surgeon's and the patient's signatures, as evidence that the patient gave her informed consent and was informed of all the risks associated with the implants?

12:50 p.m.

Liberal

The Chair Liberal Sean Casey

Be brief if you can, please.

12:50 p.m.

Patient Advocate, Breast Implant Safety Alliance

Julie Elliott

What's needed is a mandatory standardized informed consent form. It should be in the same format, with the same questions, and the same information for everyone. There should also be consequences for private practice surgeons who do not complete the form with their patients.

12:50 p.m.

Liberal

The Chair Liberal Sean Casey

Thank you, Ms. Elliott.

Mr. Davies, you have two and a half minutes, please.

12:50 p.m.

NDP

Don Davies NDP Vancouver Kingsway, BC

Thank you.

After hearing a lot of testimony, I'm still finding myself a little bit unclear about the state of research in this area. I'm totally convinced, by the way, that the three illnesses are linked and that we should act regardless, based on the precautionary principle.

I'm just wondering about this: In your view, Ms. Elliott, should the federal government provide targeted funding to support research related to breast implant illness? It would seem that if there is any confusion in the literature or in the profession among surgeons, this should be resolved immediately by funding absolutely strong clinical trials and research.

My mind was going to the exact same place my colleague Mr. Thériault was going. Even if we don't have crystal-clear causes or evidence yet, it would seem to me that based on the precautionary principle, Health Canada should require all surgeons to issue a standard warning that lists at least the possibility of the three illnesses. Is that something you think Health Canada should be doing?

12:55 p.m.

Patient Advocate, Breast Implant Safety Alliance

Julie Elliott

Of course.

12:55 p.m.

NDP

Don Davies NDP Vancouver Kingsway, BC

My final question is on the gendered nature of this issue.

This committee is going to be looking at women's health in another study that's coming up. I'm just wondering.... I can't help but say that this has been going on since the sixties. I think you mentioned cars being recalled, and I think we do have a registry of implants for everything else.

Is it possible that this reflects a larger societal issue about the way we treat women's health by not taking women seriously, by denying their anecdotal complaints, by dismissing them and by being so slow to act when we see clear ties?

12:55 p.m.

Patient Advocate, Breast Implant Safety Alliance

Terri McGregor

You know, it's hard for me to not jump out of my seat and answer that question.

I understand that there's a hierarchy in medicine, but I will suggest that somewhere in this private practice industry of plastic surgery, we see a patriarchal hierarchy of medicine gaslighting female patients. If anyone would ever wanted to write a Ph.D. or case theory, I would strongly suggest that they use private practice breast implant surgeons as that cliché model.

12:55 p.m.

NDP

Don Davies NDP Vancouver Kingsway, BC

Ms. Elliott, do you have a comment on that?

12:55 p.m.

Patient Advocate, Breast Implant Safety Alliance

Julie Elliott

I'm going to express myself in French.

It's just that I don't want to get the date wrong.

In 1988, Health Canada dismissed a scientist because he had said that breast implants ought not to be on the market, and that they should be withdrawn immediately. I provided you in the appendix with the URL for an article about this. Health Canada dismissed the scientist because he wanted to publicly release the Health Canada records indicating that these implants should not be on the market.