David Fellows is guided by listening to patients and their families as they prepare for one of life’s worst moments--a “date with darkness”
David Fellows is on a mission to prevent blindness.
Fellows is CEO of Beacon Therapeutics, which is developing several potential treatments for patients with a range of prevalent and rare retinal diseases such as the treatment for X-linked retinitis pigmentosa (XLRP).
"These patients, mostly young boys and men, will eventually go blind, and generally the symptoms start when they're in their early teens," he says. "By the time they're in their fourth decade of life, they're down to pinhole vision, and ultimately they lose their vision completely."
Fellows, who has worked in the ophthalmology field for more than 40 years, has a passion for finding a solution for this condition that stems from the many patients and families he has met who are affected by XLRP. He remembers one such experience in the UK, when he looked on as a physician met with a family whose young son was slowly going blind from XLRP.
The doctor, Fellows says, was explaining to the parents that one of the first symptoms of retinitis pigmentosa is losing night vision. The boy chimed in that he was already experiencing night vision loss. He said that had been playing tag with his friends in the evening and had run into a bench that he couldn't see. At that point, the boy said, he quit playing the game.
The boy then explained how the disease is affecting him.
“The thought that I might not be able to get a driver's license is devastating,” the boy said, according to Fellows, “but the biggest fear for me is I'm going to come to that point where I meet my date with darkness. That's the day I wake up and everything is black.”
"It's devastating for these kids because they're concerned that they will never be able to get their driver's license," Fellows says. "They're concerned they won't be able to get accepted into college. They're concerned that they won't be able to choose the career they want because of the limitations to their sight."
A Mission to Prevent Blindness
That incident and many more like it have inspired Fellows and his colleagues to be at the forefront of finding ways to manage XLRP. And interacting with patients is the key to pursuing that goal.
"We reach out to our patient support groups and work directly with them, and we also talk to the patients and families," Fellows says. "Our employees meet with patients because I firmly believe that you really have to get to know [them] to understand the journey that they're on. It really helps connect us to what we're trying to do on a day-to-day basis."
There are no current treatments for XLRP, which affects approximately 17,000 people in the U.S. and Europe.
"The most important thing for us is to find a way to get treatments to patients quickly because these people are all going blind," Fellows says. "They are living with the prospect of blindness their whole life. And now we have something that not only will save the vision, but potentially improve it."
David Fellows, CEO of Beacon Therapeutics. Photo courtesy Beacon Therapeutics.
Beacon recently presented robust 12-month data from its Phase 2 SKYLINE trial. According to researchers, males with XLRP demonstrated a response rate of 63% in eyes treated with a high dose of AGTC-501. Response rates in patients’ eyes treated with a low dose of AGTC-501 were similar to the untreated eyes in the high dose cohort. In addition, patients treated with a high dose demonstrated a robust improvement in visual function, including mean retinal sensitivity. Finally, according to the researchers, AGTC-501 was generally well tolerated, with no clinically significant safety events associated with treatment, and any treatment-related adverse events were mostly non-serious and mild to moderate in severity.
Beacon's second program focuses on an intravitreally (IVT) delivered novel AAV-based gene therapy for dry Age-related Macular Degeneration (Dry AMD), a leading cause of irreversible vision loss in people over 60. IVT delivery is less invasive, requires less clinician training and can be delivered in a clinic rather than via surgery.
"We're injecting the drug into the vitreous in the eye,” Fellows says. “And we're using an AAV capsid as the delivery vehicle, [which] will allow the complement factors to be expressed in the retina and presumably be able to affect the course of this disease and prevent the loss of vision.”
Leadership Begins With Listening
Fellows began his career as a sales rep, and discovered early on that a key element to success is listening. He says he listened to what the doctors were saying, identified their needs, and converted that into something that he could act on to solve a problem.
"From a leadership standpoint, listening to what people are telling you about what their needs are, and then trying to find a way that you can address those needs, builds successful relationships with physicians, patients, and employees," he says. "As long as you have your two ears open and you're listening, you're processing and acting, I think that's a good guide to leadership."
From Private to Public, And Vice Versa
Fellows has also had the unusual opportunity of both leading a company through an IPO and taking a public company private.
"Most people don't get the opportunity to do that," he says.
The publicly traded company going private was the Applied Genetic Technologies Corporation (AGTC), a clinical-stage biotechnology company focused on the development and commercialization of adeno-associated virus (AAV)-based gene therapies for the treatment of rare and debilitating diseases. AGTC was one of the original gene therapy companies and had been in business for more than 20 years.
"AGTC was purchased in November of 2022 by Syncona, one of the leading European investors, and that's when they asked me to take over the company and take it private," Fellows says. "I'm used to the other way around: taking a private company public. It's been a really interesting experience from that standpoint."
He says the biggest challenge in the privatization process is finding new funding sources after losing public financing.
"We've been in the process of raising money, and we anticipate we will be very successful,” he says. “But it is challenging, especially in this environment in the biotech world."
Another challenge involved orchestrating change management in an operation that had been in business for more than a decade.
"Asking people to unlearn behaviors and processes and convincing them there are different ways to do that" is difficult, Fellows says. "I spent a lot of time coaching people that it was now acceptable to stand up and give their opinion and to work new solutions."
Outside the Office
Creating a new work environment for more than 100 employees while driving several programs forward that may help prevent blindness keeps Fellows busy. For relaxation, he enjoys his collection of classic cars, especially his black 1969 280SL Mercedes.
But everyday his focus is on the patients.
"There's only one reason to be in the drug development business and that's to get something to the market that's going to help patients,” he says. “And if you're not interested in that, then I think you're in the wrong career.”
Robin Robinson is a contributing writer for HealthLeaders.
KEY TAKEAWAYS
David Fellows is leading Beacon Therapeutics forward in the development of novel treatments for young men in danger of going blind.
Fellows says he’s compelled by his interactions with patients and their families.