Refocusing on Firefighter Cancer : Advocacy/Research
Jim Burneka of Firefighter Cancer Consultants interviews Diane Cotter
Link to fireside chat with Diane and Jim Burneka:
JB: All right welcome everyone to a special edition of APS Radio. Also the 25 Live PODCAST AND AH I’m here with Diane Cotter. Diane was asked to participate in this National Firefighter Cancer Symposium in 2021. And ah, they wanted her to do slides and all that stuff and that’s not what she does. So- I am her slides essentially. So with that, welcome Diane — ah, otherwise known as that ‘crazy lady from Massachusetts’, right?
DC: (Laughter) Thank you Jim. Thank you and I really want to also thank the First Responder Center for Excellence and my friend Dr. Alberto Caban-Martinez of the Sylvester Comprehensive Cancer Center for this opportunity. We’re really glad to be able to give you our story today.
JB: All right well perfect. Well, let’s start with how this story started — and that’s with your husband Paul.
DC: Yes. Paul was a Lieutenant, had just been promoted to Lieutenant of the Worcester, Massachusetts Fire Department in 2014 after service almost 25 years on the Rescue that he so loved, and um, we had just come back from our vacation in Maine and were going to Paul’s promotion in City Hall and um, one month later we had found out that Paul had been diagnosed with prostate cancer. He had no symptoms, he had no family history. Um, but it did end his career -and, because of the side effects of the surgery. And um that has been pretty much the starting point of where we began to look at what could have been the potential cause. Paul was well known for his physical fitness and so well known for being that ‘salty firefighter that like to engage everyone to work out with him’. Um, yeah, that’s where it began.
JB: So you started to seek answers. Where did this cancer come from?
DC: Yes.
JB: Where did, when did you figure out that it might actually be the gear that Paul’s wearing?
DC: Well that is just a fascinating turn of events because while Paul was recuperating from surgery in 2015, I began looking at the actual um, components of the gear itself. We were very familiar with firefighter cancer because every firefighter family is very familiar — as –now know yourself Jim — and, what happened was I found a 1999 recall from the labor union, from the IAFF (International Association of Firefighters) about a ‘BreathTex Moisture Barrier’. And it didn’t surprise me about the moisture barrier recall, what surprised me was the manufacturers reaction to the labor union wanting a recall. They didn’t want to recall the products and that was kinda like the first thing that sent this big “humm” down my spine about well, ‘what is up with the manufacturers here?’.
That then led to finding a product with degradation of the Kevlar and the Nomex, as was the case of the New Jersey firefighter who was unfortunately steamed, um, his steam burns led to his — his death.
And I began reaching out to environmentalists, scientists, firefighters, because I actually was prompted by that — that um revelation to look at Paul’s own gear. And I looked in the groin area of Paul’s gear and saw these big quarter and dime pieces of (inner) fabric missing. I had to shine a flashlight through the gear to actually find these missing pieces.
And I began reaching out to firefighters, environmentalists, and one of the environmentalists that I reached out to was Erin Brockovich. And she returned my email, one day I got a call from her. She said, “I’m calling because I wanted to ask you about firefighter cancer.” “I just received a call from a New Hampshire fire chief with thirteen firefighters (with cancer)” . And my response was, really not something I’m proud of but I said, “well, every fire house is a cancer cluster”.
She was first to ask if the gear contained PFOA or PFOS. Which I had never heard of. It literally took less than 30 seconds to ‘Google’ and find that Europe was already transitioning — a potential transition that is — to ‘non-PFOA PPE’. That then led me to start post on social media, “does our gear have this, do you people know if our gear has that?”. And then I began reaching out um, to my husbands’s labor union.
And one of the parties that I reached out to — well one of the parties that saw me is now a dear friend, Jason Burns from Fall River, (MA Local 1314) Jason had just lost two thirty-year old firefighters to rare brain cancers. Jason then took on the role of trying to work with me to find out what was happening within the labor union on the PFOA issue. Um, he brought it to the IAFF Legislative week in March of 2017, and I think that they were taken by surprise. Um, because it appeared as though the IAFF did not know that this was actually a cause of concern in Europe.
JB: Right. Let’s fast forward to March of 2017 when you write, ‘The Real Cancer in Your Gear’ article and that gets published. And I know at this point in time it’s been downloaded tens of thousands of times but can you talk to me about that article? And then really, the fallout of that article?
DC: Yes. The Real Cancer In Your Gear. Um, I had been trying to message any type of fire service that I could um, through Facebook ‘Messenger’ — I’d send out two-hundred messages a day and then I’d get kicked off of Facebook for the day but then I’d start up again the moment that I was out of Facebook jail. And one of parties that I wrote to was Jon Marr, Editor of Station Pride. And he said, “I don’t know if you’re crazy or what, but write me an article”. And I said, “well I’m not a writer”. He said, “you don’t have to be, I am and I’ll help you”. So I wrote Jon a very long article and he said, “I can’t publish this Diane, it’s way too long”. “But I can’t leave anything out either.” He said, “but I have to fact check everything you say, I can’t put myself in danger and I can’t put you in danger, if what you’re saying is not accurate”.
So he did, he came back — we’d go back and forth a number of times and he would then publish The Real Cancer In Your Gear and in one day we say that it had over 4,000 shares. And not one question. And it had firefighter tagging other firefighters and tagging fire departments but nobody would ask the question, ‘could she be right’? And that, that really was when things started to take off and um, we began having a platform at that point Station Pride. And then I began to go on and get my own platform on social media Your Turnout Gear and PFOA.
JB: Nice little plug there.
DC: Laughter
JB: Follow her on Twitter and Facebook. Um, now, shortly after this there was a response from the industry. Correct?
DC: … Oh boy…. Right after that. Within 9 days after that initial article — I hadn’t seen this response until maybe a year ago. But, Lion Gear came out with a series of emails to other um, vendors, that they work with and they were calling for information, “in case they need ammo”.
What was so troubling about that series of emails is that Lion Gear at that point in time had no science to base their judgement off of or their statements. What they were using was science from a um, study done on rain-wear. On Patagonia rain-wear. Not on your technical firefighter gear. And we just saw that um, that this fantastic chain of email was just stunning because we were so disappointed in the organization that prided itself on the ‘Not in Your (Our) House’ um, you know, mantra of firefighter cancer.
And that really was an eye opener. That was one of the many, many eye openers that we’d experience along the way. Um, but the, The Real Cancer In Your Gear article then opened up the door for many conversations on Facebook, and that would lead to us soliciting Robert Bilott. Attorney Rob Bilott. DuPont’s Worst Nightmare. And that came about because after realising that um there could be a potential danger to firefighters, we really wanted to know what chances we had if any of um restitution for firefighters, because I had by this point already purchased the initial set of brand new, never-worn turnout gear and I had been able to um, communicate with a series of scientists who connected me with Dr. Graham Peaslee.
Dr. Peaslee instructed me on how to send him the um, samples that he would test — this turnout gear. And I’ll provide in our discussion later the actual results of that. The results were so shocking that he had to count the fluorine in volume. He couldn’t count it in his regular method of parts per million, or billion, or trillion. Um, and that then led me to search for someone that would help us — legally.
And I Googled ‘ PFOA’ and, ‘DuPont’ and what popped up was the New York Times Article, “DuPont’s Worst Nightmare”.
After about a-hundred-and-sixty emails attempts to Attorney Bilott, I partnered with another firefighter with prostate cancer. My friend fire chief Jeffrey Hermes. And Jeff wrote a very compelling letter to Attorney Bilott and that’s the reason that I believe that we have Attorney Bilott is because of fire Chief Jeffrey Hermes.
JB: And he’s working right now — for us. I mean he’s doing a class action right now with the plaintiff being a firefighter.
DC: Yes. With fire Chief — Ohio Fire Chief Kevin Hardwick — also a cancer survivor ( correction) also worked in the air force with AFFF — and this is exactly why we wanted Attorney Rob Bilott.
(Correction, Chief Hardwick has not had cancer, he is a nationally known advocate for firefighter cancer advocacy, and Kevin’s air force career was municipal, not DoD.) —
Rob Bilott then went right to work in 2017 with his 196-page letter to the EPA, the CDC and the ATSDR and the US Attorney General, calling for medical monitoring and health studies for firefighters — and he still is pushing hard that agenda — today, and as you just said, Jim, his national class action for every person in the United States, not just firefighters. Every man woman and child with a minuscule of PFAS in their blood — he is seeking medical monitoring and health studies — for all of us, with his plaintiff Fire Chief Kevin Hardwick.
JB: I wanna step back real quick because you mentioned before — you put out your article, the industry puts out their information and being where I’m located — in exotic Beavercreek, Ohio — suburb of Dayton, in which there’s two large manufacturers right there, ah, in my town — I remember talking to these individuals and they — said the things — and there’s probably people in this room that are listening right now — where they heard, “ah well that stuff — it is in legacy gear, 2015 or before. Or, that chemical, we don’t use that anymore we use PFAS and it’s safe — or it’s in trace amounts’. So that was — we heard that for years and it still — and I’m still hearing some of that stuff.
DC: The ‘trace amounts’ — well that’s what led us to the big study.
And the big study came after our initial findings with Dr. Peaslee. And, at that point he said, “Diane you may want further into a bigger study”. And at this time I was still screaming like a lunatic but gathering a little bit of momentum now — and maybe people were starting to think, ‘maybe there’s something to this’.
But we needed a very big study. And one of the parties that reached out to me was a firefighter from northern California, his name is Jeff Knobbe- Jeffrey Knobbe and he is a PPE Specialist.
I also had Jon Marr of Station Pride, and we had Mitch Huner from Chicago Fire Department and here on the east coast we had Ryan Riley who was a Health and Safety Officer from Salem (MA) Fire Department.
We then collaborated and wanted to fund a big study. So that we could get 20 years worth of gear to nuclear physicist Graham Peaslee at Notre Dame.
To do that we needed money. And for that I reached out to Kathy Crosby Bell of Boston (Last Call Foundation) Honoring Firefighter Michael Kennedy. And Paul and I traveled to Boston and met Kathy one day at Florian Hall — told her what we were up to and immediately she said, “absolutely”. She would want to support our efforts. She is the reason why we have the study. She’s covered all of the commercial testing for us while Dr. Peaslee has literally worked — since 2017 um, pro bono on this issue.
download study here and donate to LCF while you’re there:
And that’s how we got the study to confirm our — our fears. Which were that the gear had not only PFOA but it had a vast array of other PFAS, with the new ‘regrettable substitutions’ that they’re called. And that — that actually hit the — the media in 2020. That was June 2020 our study was published. But prior to that we’ve had a lot of shenanigans’ that had occurred within the fire service. And um, sadly it was — it was truly an effort of the previous administration of the labor union that was stymieing my efforts and the efforts of the people that were working closely with us — to educate the front line on this subject.
Um, we would see that first hand in April of 2019 when Lion Gear would publish ‘All You Need to Know About PFOA’. And it was shocking that we would see that the IAFF had seen this study and supported that there was not enough PFAS or PFOA to worry about.
Thankfully Jeff Knobbe — my partner wanted to investigate further. And the only way you could see the study is if you called Lion Gear. Lion Gear’s Andy Schwartz and his team flew to northern California where Jeff was able to see the study. While there in northern California — during this meeting a third party would call in, and this would be Dr. Paul Chrostowski — who was the consultant on this study. The study was done by Exponent which is a — non-peer reviewed study, um, as opposed to peer reviewed by the science journals. At any event, Dr. Chrostowski would tell Jeff Knobbe that he shouldn’t worry about the side chain polymers because they were too big to go through his skin — they were like volleyballs and tennis balls.
We would see that exact same language in January of 2020 promulgated by the Health and Safety division of the Schaitberger administration of the labor union. It would happen during a PFAS and Toxic Substance Control agenda that was being aired by the — aired live by the IAFF. And during that I was watching as well as Jeff and Jeff messaged me, he said, “did you see what just happened!” “The tennis balls and the volleyballs!” “That’s exactly what they said to me when I had them here!”
At that moment we knew, this is so much worse than we thought. So much worse than we thought. I began at that point a real visceral attack because I felt that everyone needed to know what I knew — and I didn’t expect that firefighters were as invested in this as I was because I had 12 hours a day to put into it and I had become like a sounding board — via direct messages — of people that were questioning, ‘why am I hearing this, why am I hearing that?’.
Also, during that um presentation you saw that the IAFF gave credit to Harold Schaitberger for the 2 million dollar NIST study — and I took huge exception to that because the IAFF had nothing to do with that study. It was the advocacy of myself and Dr. Peaslee working with Senator Shaheen and I wasn’t looking for acknowledgement — What I saw was that was another avenue of propaganda that the general president could appear that he was on board with this 2 million dollar NIST study that we had advocated for and um, that they weren’t even aware of until a week before because they asked, you know, ‘who might sign it?’ and I said, “well I think you should try Pat Morrison at the IAFF” — which they did sign it but they weren’t involved with anything until a week before — but they took full credit for the study.
At that point I knew I had to become very vocal about educating the front line that ‘you are part of a propaganda machine’ because the IAFF right now is only supporting a non-peer reviewed study.
JB: So in 2020, now in this point in time, if you’re not crazy — now you’re going crazy cause nobody’s listening to ya — you’re having a difficult time, you’re shouting from the mountains — and just not — people aren’t seeing what you’re seeing — or they’re looking the other way — whatever it may be.
DC: Right.
JB: But you fast forward to early January of this year (2021) and all of a sudden you actually have some allies.
DC: Yup.
JB: And we went to the IFF convention — and several things happened there — of significance regarding this topic. Ah — there was a Resolution 28 — which called on the IFF to no longer accept sponsorship's from the chemical industry, textile manufacturers or PPE manufacturers that use toxic chemicals in PPE. That passed in January. One-thousand-three-hundred-thirty-six to ten. That came from Fall Rivers’ Jason Burns and Sean Mitchell of Nantucket — your state. And then, along with that there was another resolution — Resolution 31 that calls on the IFF to actively oppose the use of PFAS in turnout gear and to seek independent testing of PPE currently available — determine levels of PFAS and ability to of these chemicals to penetrate the skin. That passed one-thousand-four-hundred-seventy-two to four. And that came from Florida area which all you guys and gals are at right now. So you know — thanks to Ron Glass and those guys that helped out with that.
And the other thing of significance is — we got a new president. Also from where you’re at (MA) — and he’s been supportive of this stuff.
DC: He’s been so supportive Jim, since 2017 I began reaching out to Ed Kelly and he has pushed me along in ways that um — I have to say I’ve been um — embarrassed at some point in my visceral reactions to things that haven’t gone quite my way and Ed has completely acknowledged my passion and said, “you have got to keep fighting Diane, because we have got to get to the truth”.
JB: So along with that — um, after this happens — there’s actually some change. All of a sudden some manufacturers are out there — they have outer shells that are PFAS free — and we realized that the only way that we’re gonna have a fluorine free — PFAS free gear is if we change the rules — the standard of NFPA 1971.
DC: Correct.
JB: Because there’s this UV light test in there and that’s what’s holding up — basically it’s — you have to have Teflon in there — and that’s what’s holding up having fluorine free gear.
DC: Correct.
JB: So I know several years ago you submitted a TIA.
DC: I did.
JB: It did not go anywhere.
DC: Correct.
JB: And having been involved in this current process — it’s — I mean it is a heck of a process to even get it seen — but this is even just kind of giving the viewers an idea of what’s happening right now.
Ah, later on this month in June, the NFPA 1971 is gonna be meeting discussing this TIA that was submitted and it was actually signed by President Ed Kelly — ah, and it’s going to be hopefully viewed at the standard council meeting in August and there’s going to be an opportunity for public comments and that’s where we can start and hopefully end this revolution to where we actually get rid of this stuff out of our gear. So you’ll see it on Facebook, and Twitter, and MySpace, and Tinder and whatever social media you use it doesn’t matter — this stuff is gonna be on there — we’re gonna be pushing for your help cause we have to have these comments in that public comment section that really give us a chance because where we had all these numbers in the IFF — you know — 1472 to 4 — now all of a sudden these committees — I mean, they have the manufacturers — they have the chemical companies on there. So, it’s gonna be an uphill fight — to get this done.
DC: I couldn’t — I couldn’t support your statement more to be honest with you Jim. And I want to say in 2020 we did get the Calvary — and they came from Nantucket. And I’m so grateful for Sean Mitchell and all that he’s been able to accomplish. I’m so grateful to all of the allies — I’m so grateful to all of the messages that come in on a regular basis that people see the efforts that we’re producing. Um, but truly this is the coup-de-gras — will be to remove that — that fallicious ‘xenon light test’ that even Jeff Stull — a chemist — said himself back in 2006 — ah, we saw that first ‘xenon light test’ 2006 — yeah so that definitely needs to go.
JB: So we are knocking on that door Diane,
DC: Yeah.
JB: Of finally giving you a break. You know, I’ve read this before where you said, ‘you want to get back to your family, you dedicated over five years to this issue, to a issue that never should have been in the hands of a fire-wife’. You’re a grandmother, and you’re taken away from being a grandma a lot of times dealing with all this stuff every single day — ah, emails, phone calls, texts, all that kind of stuff. So, I mean we are that close — a little bit of work — we’ll finally get this done and you’ll be able to be that grandma and to have that validation — you may be a little crazy but you’re not completely crazy, right?
DC: Correct. Correct.
JB: So that’s probably still not the end I’m guessing. Maybe you’ll take a break but I have a feeling that you still want to know more answers.
DC: We do, I think that the fire service is absolutely owed an explanation — we’ve been pushing for hearings on Capitol Hill with our Congressionals. We really are owed to know, who-knew-what-and-when-did-they-know-it. And it’s really not enough to write forward looking legislation to protect firefighters — who’s gonna pay for the turnout gear for the city of Worcester if they need to replace 400 sets of gear times 2 — or for Fall River who’s an environmental justice community? These are the things that we want addressed — and we can’t just look at firefighters having um, a closer incidence to cancer because of products of combustion — we really have to look at these products of deception.
JB: Perfectly said. So I’m looking forward to seeing you live in person in exotic Beavercreek, Ohio — it’s a shameless plug for my conference #PFASpalooza on Friday, November 5th with Brothers Helping Brothers. And I actually got this done in time. You know this is Massachusetts and Ohio time, sorry Alberto ! Not Miami time! We actually do stuff in our slotted periods.
So thank you again Mrs. Cotter. Crazy lady from Massachusetts. We all love you and thank you. We wouldn’t be in this position to where we’re actually looking at the possibility of PFAS free gear if it wasn’t for you and your tremendous — tremendous work.
DC: Thank you, we owe it all to my husband. Lieutenant Paul Cotter — it cost him everything.
Thank you.
