Speaking Up for Patients

By Jill Tyrer | Dec. 12, 2023

Rick Phillips knows how important it is for patients to have a seat at the tables where drug decisions are made. As someone living with type 1 diabetes for much of his life, rheumatoid arthritis since 2000 and ankylosing spondylitis since 2015, he’s had his share of coping with the impacts of those decisions — and the absence of adequate treatments.

That’s why it’s important to have a patient voice on the Arthritis Advisory Committee for the Food and Drug Administration — where he joins eight rheumatologist/researchers, a doctor of pharmacy and a biostatistician on the 10-member committee — and why Rick wants to be that voice.

When a pharmaceutical company applies to the FDA to approve a new type of drug — one with a novel mechanism of action, for example — the agency may turn it over first to the advisory committee to review. As a committee member, Rick plans to push for new medications and lower costs among other measures.

“Manufacturers need to know that osteoarthritis is a terrible issue without effective treatments. They need to know that our current medications do not cure inflammatory arthritis, and they need to know that patients need better, quicker-acting medications,” he says.

“In the diabetes community we say, ‘never about us without us,’ and that is my absolute mantra,” Rick says. “Patients need to be heard, even if what we are saying is we need better. We may not speak the same language as the biostatistician or the rheumatologist scientist, but we have to remind people that we need to strive forward with our medications, because if we don’t, nobody else will advance us.”

Pharmaceutical companies make products for profits, but if relatively few people have a particular condition, like ankylosing spondylitis, drug companies may decide it’s not worth the investment to develop new drugs for that condition. So patients have to push for treatments, Rick explains.

“We have to remind policy makers and pharma — everybody in the chain — that this is not medication for the sake of medication. This is medication for people. If I can bring that to these deliberations, that’s what’s most important.”

New drugs aren’t Rick’s only goal in speaking up for patients, though. He wants to see more personalized medicine, where genetic and other tests will be used to narrow down which drugs might work for which patients.

“I don’t know that we will ever know that X treatment will work with Y patients, but I do believe soon we will have probabilities that X treatment will work with Y patient,” says Rick, who is on his fifth biologic after trying and failing several others.

“The first one worked so well until it didn’t. And, boy, when it didn’t, it really didn’t,” he says. “I think this Russian roulette that we play with medications will come to an end. I hope that it will come to an end.”

The committee deals with very technical issues, but Rick is eminently qualified as a well-informed patient and someone who continually pursues education. He had a high-pressure career as business director of a school corporation in Indiana, overseeing nine school buildings and a $40 million budget. When his rheumatoid arthritis made it impossible for him to continue, he lost that job in 2008.

“It was a very bitter pill to swallow,” Rick recalls. “I was 52. I didn’t have anything else. I didn’t see the possibility of ever having anything else.”

He took a nosedive into depression. But, he adds, “When I’m depressed, I go back to school.”

In 2013, Rick graduated with a doctorate in education. He knew he wouldn’t be able to work, but the degree would open new opportunities. He became a committed patient advocate and valued volunteer for the Arthritis Foundation, serving on what was its Patient Leadership Council among other roles. He volunteers as a patient voice for a number of other nonprofit and governmental patient-focused organizations as well, from the FDA to the American College of Rheumatology to the International Diabetes Federation.

No drug applications have come up since Rick’s appointment for the advisory committee to review, but he knows there are some in the pipeline, and he’s looking forward to meeting with the committee.

“I cannot wait to say to my fellow committee members, ‘Patients are very important. Yes, it’s about numbers. Yes, it’s about making sure medications work. Yes, it’s about the cost of bringing mediations to market. But it’s also about hope. We have a lot of people in the arthritis community who, unfortunately — because medications continue to not work or never worked or are too expensive — people who don’t have a lot of hope. And isn’t that exciting to know you might be able to make a difference for people who are having trouble finding hope?”