ALS advocate Troy Fields is relentless in his work to end ALS—the disease he’s living with. A married father of four who lives in Tampa, FL, Troy’s path to diagnosis was particularly brutal. As his doctors worked to confirm the ALS diagnosis, they found stage 3 cancer on one of his kidneys (he later had his kidney removed). During the first three years of his ALS journey, Troy had to have regular scans to ensure the cancer didn’t return. Fortunately it didn’t.
That was seven years ago.
Now, Troy is healthy, in remission from cancer, and serving as a dedicated advocate and volunteer for I AM ALS and in other ALS community roles. One of those roles is as a patient representative on the steering committee for an expanded access program (EAP) funded by ACT for ALS.
Every EAP is required to have a steering committee that includes a patient representative. The EAP with which Troy works is a relatively new one. He learned about it from Dr. Oskarsson, the head of Jacksonville’s Mayo Clinic where Troy goes for his ALS care, who knew Troy was involved in advocacy work and thought he’d want to be on the steering committee. In September 2024, the Mayo Clinic Florida received a $22 million grant to test the investigational therapy Ibudilast on people with ALS.
Having a patient representative on each EAP is an important part of the research process, Troy says. “That person gives a lived experience and a voice to the EAP and related research,” he says. “I’m not a scientist and, as a member of the steering committee, I can’t participate in this EAP. But I can offer other perspectives, like accessibility or intended/unintended consequences of inclusion or exclusion criteria. I get to add context of what the scientists’ decisions might mean to a subset of the population with ALS.”
Right now, Troy says, one area of opportunity for improvement on EAPs is how quickly sites fill up and patients get enrolled. Troy provides regular reminders about the need for urgency and the need to move quicker. “Compared to clinical trials, these programs are not slow. But in the context of the urgent need for treatment, they can be slow to get off the ground.”
“The project plan needs to reflect the ALS clock. I’m always asking, Can we do it faster? Can we get more sites, sites enrolled quicker, get the website up sooner so people know where to go? There’s always an opportunity to improve, especially for a ‘first of its kind’ program such as this one.” Troy is a driving force and the voice of patient urgency as a member of the steering committee for the Ibudilast program.
Reflecting back on his journey to diagnosis, Troy remembers trying to access a few clinical trials, but he was excluded because of the past history of kidney cancer and the resulting nephrectomy (removal of a kidney). A strong proponent of EAPs, Troy hopes to participate in one in the future.
“ACT for ALS and what it created is groundbreaking and I’m a firm believer in what they are accomplishing,” Troy says. “As a person living with ALS, these are opportunities we didn’t have before. EAPs were around [before ACT for ALS], but they were smaller because they were [biotech] company-funded. And we didn’t have the research component, or the work that’s being done through the private/public partnership—which is funding AMP ALS and ALL ALS natural history study.”
“ACT for ALS is currently funding the largest research study (in scope and money) in history. It hits all cylinders,” he says.
Thanks to ACT for ALS, EAPs has increased access to treatments—allowing almost 700 people so far to have access they wouldn’t have otherwise had—while the natural history study will enroll 2,000 participants. Troy calls this a “significant gain” for the ALS community.
“We’re learning so much in these first five years of ACT for ALS,” he says, while admitting that some tweaks are needed to improve the programs and educate the public more before ACT for ALS is up for reauthorization in 2026. But the impact of ACT for ALS EAPs is clear.
“We’re learning with every new EAP, and we’re getting better. We see CLENE being able to add more seats [to their EAP] because they were able to realize additional efficiencies. We’re also seeing reported outcomes of improvement on forced vital capacity (FVC) from another EAP.”
Troy references the value of the biomarker research work and the data sharing that’s being done with these EAPs as another great area of benefit. He also mentioned that ACT for ALS incentivizes small businesses who wouldn’t be able to offer these programs otherwise. (I might add something in here about how the ALS biopharma field is mostly comprised of smaller businesses without access to a lot of capital.
“These EAPs allow you to see—without affecting your clinical trial data or drug approval—the impact of these treatments on people who would otherwise not qualify for trials,” he says. “We’re getting a broader perspective on treatments from other segments of the ALS population. That data is proving invaluable. You may not have had that same opportunity with a slow progressor or someone newly diagnosed who signed up for a clinical trial.”
Capturing the data from a variety of people living with ALS can help show that a drug works in people who are more than two years past their diagnosis with ALS. By connecting the dots with more data, this can be used to show efficacy in the slow-progressing population of people living with ALS, which can in turn impact who the FDA recommends receive the treatment and whether or not insurance companies will cover it.
There’s a role for everyone in the ALS community, he says. “Even if you’re not participating, you can spread the word, support this funding, support reauthorization, and do more advocacy,” Troy says. “When opportunities come to participate in a trial or EAP, or sit in a patient group or help advise, take those! You can also participate in the natural history study through ALL ALS.”
“As a patient community, we have a responsibility to be active so that the next generation of ALS patients will have better opportunities for benefits and treatments,” Troy says.
And while it’s true that the research and data EAPs are bringing together will be invaluable, what’s more inspiring to Troy is what these programs represent for people who are living with a fatal neurodegenerative disease: hope.
“I believe EAPs represent hope in a very practical matter,” he says. “Hope is this intangible feeling. EAPs make it a tangible, achievable thing. It’s no longer ethereal, it’s actually something we can be a part of and reap the benefits.”