This feature is part of our new Fire Chief Digital Edition, a quarterly supplement to FireChief.com that brings a sharpened focus to some of the most challenging topics facing fire chiefs and fire service leaders everywhere. To read all of the articles included in the Summer 2016 issue, click here.
By Sarah Calams
In 2005, firefighter and paramedic Cindy Ell was diagnosed with stage 2 melanoma.
Now, after a series of surgeries and two line-of-duty neck injuries that forced her into retirement, she sits in her home office in Wilmington, Del., running the International Firefighter Cancer Foundation. It’s not like riding on the rig to emergency calls, but it keeps her busy and saving lives just the same.
Maybe even more.
Ell, a 15-year fire service veteran, now dedicates her time and energy to providing outreach, support and resource assistance programs for firefighters and family members diagnosed with cancer.
The IFCF, a nonprofit organization, operates on less than $20,000 a year and the board members, including Ell, donate their time. The foundation not only helps support and assist firefighters diagnosed with job-related cancers, but also keeps a close eye on what bills are being presented and passed by legislation.
The foundation, which started in 2004, was originally named Families of Firefighters with Cancer. In 2006, they rebranded as the Firefighter Cancer Foundation. And in 2014, the foundation’s Australian chapter was officially recognized as a charity and they became the International Firefighter Cancer Foundation.
As a probationary firefighter for Anne Arundel County, Md., Ell heard a story of mystery oil that was donated to her fire academy for training. As she began to do more research on the oil, she started noticing the cancer rates in her department accelerate. At the time, she was also working part time at Johns Hopkins University and started talking to oncologists and a variety of researchers about firefighter cancer.
“I started doing online research and we ended up with an exposure group of 2,000 from 10 different departments in Maryland,” Ell said. “And of that 2,000, we have now lost over 200 firefighters to cancer.”
After Ell suffered two line-of-duty neck injuries, she transitioned from an active duty firefighter to retired. She saw first-hand how much help the families of those fallen firefighters needed and began to create a resource program.
“We work with these firefighters or families from diagnosis to funeral,” Ell said. “We take care of them and continue to keep tabs on them throughout the years on how they’re doing.”
Along with providing resources to first responders and family members diagnosed with cancer, the IFCF teaches them how to be self-advocates and how to access resources they may not know are available.
“We also promote awareness that firefighter cancer is a growing area of concern,” Ell mentioned. “We do a lot of that using social media in addition to any print pieces or work that we’re doing. We also produce educational programming and we’re trying to break the barriers of causes and effects of firefighter cancer.”
They’ve also begun working with a research team on late-stage cancer research technology, are engaged in fire behavior and carcinogen research and are now participating in research for early cancer detection by using K-9s that can sniff out cancers or diseases at stage 0.
As a matter of fact, two and a half years ago, K-9 Wyatt, a Rhodesian Ridgeback, was credited with finding another melanoma on Ell’s arm during a presentation in front of 60 New Jersey firefighters.
“When we were doing the presentation, I had stepped out to make a phone call and when I came back in the room, Wyatt made a beeline for me and started to hit various locations of my body,” she said. “There I was, standing in front of 60 firefighters with a 110-pound dog who was standing up on his hind legs trying to get to the back of my arm. I had just finished saying, ‘I can’t have cancer. I just finished being cleared by my doctors.’”
Ell travelled from New Jersey back to Delaware and had doctors do a biopsy on her arm. Seven days later, they found a stage 0 melanoma and removed four inches of tissue to get clear margins.
“I don’t talk about my cancer much because it’s not my motivation for what I do, but it did determine my path,” she said.
And because Ell knows firsthand how important it is for firefighters to have correct documentation and proper education, she started delving into legislation being presented and passed for job-related firefighter cancers.
Current firefighter cancer laws
Because every state is unique, there’s a variety of legislation currently on the books.
Some laws consider specific cancers as job related and some address cancers by system. Where the legislation addresses it by system, the laws provide more comprehensive protection for the responders.
States currently without coverage include Idaho, Montana, Wyoming, South Dakota, Arkansas, Mississippi, Kentucky, Ohio, West Virginia, North Carolina, South Carolina, Georgia, Florida, Connecticut, New Jersey, Delaware and the District of Columbia.
In contrast, some states have firefighter cancer presumption laws that give workers’ compensation or other disability benefits for firefighters who contract cancer while on the job. However, presumption laws do not guarantee that every firefighter with cancer is going to receive benefits. Firefighters still bear the burden of proof.
“We are watching trends by region — whether it’s by state or a particular part of the country,” Ell said. “Every person that we assist in our organization, we do a profile of their exposures. That includes looking at their departments, their regional exposures and their lifestyle exposures. The first thing we look at to rule out quickly is genetics. And we work back from there.”
The main type of firefighter cancers reported the most include brain, colorectal, prostate, urinary, thyroid, testicular and blood cancers.
Each state’s laws differ from the next, but Ell has found that a number of the newer pieces of legislation are incorporating specific requirements.
In Kentucky, Senate Bill 195 would classify the death of a firefighter from cancer as a line-of-duty death. The bill calls for the state to give $80,000 to families of firefighters who die from cancer. However, to be eligible for the death benefit, a firefighter must have been tobacco free for at least 10 years and been a firefighter for at least five years concurrently. They must not have been diagnosed with cancer in the past and the coverage would run out at age 65.
Kentucky’s cancer bill requirement is just one example among many others.
“This is why we, as an industry, need to educate folks that it’s important not to be a tobacco user,” Ell said. It’s not only because of your immediate health but also your long-range health and for your benefits. It’s no different than if you’re wearing PPE or not. If you don’t wear PPE and you become injured, who is at fault at that point? It’s opening an interesting door that we’re going to have to watch closely as responsibility to the individual versus responsibility of the organization and how that plays out.”
As a nonprofit, the IFCF has to remain in the advocacy realm and formally stay out of the lobbying realm when it comes to what’s presented and passed in legislation.
“We do work as hard as possible to educate and open the doors so firefighters are better advised on what they need to know and learn,” Ell said. “As firefighters, we’re the last ones that ask for help for ourselves. We’re trying to change that.”
Where laws come up short
The average amount of time it takes state associations to get cancer laws through the legislative process ranges anywhere from two to more than five sessions. Some states haven’t succeeded despite multiple attempts to get bills passed. The biggest challenge, Ell said, is the number of layers you have to navigate to get a bill to the floor of the House and Senate of every state.
“And if you do succeed getting it to the floor and passing those floor votes, then there’s still the opportunity of the speaker not calling the bill,” she said. “If the speaker does call the bill, then you face a potential beat up by the governor.”
And even though there are some state’s with firefighter cancer laws, many come up short.
One issue Ell mentioned seeing with legislators is that they’re not able to allow for the variables between the exposure to the toxin or carcinogen and the latency time of the disease diagnosis. Because there’s limited information, scientifically and research-wise, on the connection between the toxins and the latency periods of what they can do in the body, it’s hard to prove.
“Scientifically, we just don’t know. It’s hard when you’re dealing with legislation that wants to work in black and white and dollars and cents to put absolutes on it when you have so many variables.”
In a perfect world, Ell mentioned two improvements she would like to see: an occupation-appropriate physical done for every recruit before entering the fire service and a federal blanketed firefighter presumption law.
“We need a good solid baseline before firefighters come in to do this job and before they’re exposed,” she said. “It could be a type of mandatory physical and we’re currently working with associations to have it covered under their insurance.
“And ideally, a blanket firefighter presumption law would make the most sense. But from a constitutional standpoint, now you’re going against the idea of state rights and individual legislation. So, we just need to go back to science.”
How fire chiefs can help
Firefighter cancer, much like mental health issues in the fire service, is still a taboo topic.
“I had a presentation not too long ago and I was shocked when our director asked how many folks were informed about firefighter cancer,” Ell said. “Only two out of 48 in the room raised their hands.”
And that goes back to the industry’s culture.
“When you start in fire school, you adapt a mindset of, ‘If I educate myself, train myself and follow these education and training standards, I’m going to be OK.’ And the problem is — when you’re dealing with a fire event, each one has variables and they’re never textbook. There is no routine fire.”
In order to educate the fire service about firefighter cancer, there must be a push from both the top down and bottom up. From the chief level, it’s assisting firefighters with consistent industry-wide education that’s readily available for free.
“We still have a lot of chiefs out there that question the connection between some of these exposures and firefighter cancers,” Ell said. “We need to educate our own at the top and get a full buy-in.”
Ell added the importance of fire chiefs understanding the impact exposures not only have on their health but on their crews’ health.
“We’re at a point now where cancer is not becoming an ‘if’ — it’s becoming a ‘when,’” she said.
A number of state firefighter associations are now also looking into taking out health policies for their employees as a recruitment and retention tool.
“If cities or municipalities took policies out for their employees, now you’re investing in their future and making a commitment to your employees,” she said. “Firefighting is one of the few occupations where you may recover from cancer, but you may not always be able to return back to your position. As a chief, you can never forget about the value of a life.”
Just like the IFCF, chiefs must remember to offer firefighters support, encourage health and well-being and provide education on the most up-to-date resources and information about firefighter cancer and awareness.
It’s also about relaying important firefighter safety information like wearing PPE properly, using SCBA from the initial attack through the completion of overhaul, rinsing or brushing off fire debris and soot and using wet wipes to clean hands, neck, throat, jaw and face after fire operations are complete.
“Every disease starts with information first. We’re trying to get out of the shadows and be more vocal about what we’re doing, the caliber of the work we’re doing and the research we’re driving and participating in,” Ell said. “We’re here to help. Every time I’ve tried to walk away from this, I’ve gotten another phone call or someone that told me I made a difference. And I couldn’t give it up. It has become life-long work. Being able to make a difference really is the greatest reward.”
