The Push to Improve Gout Care: Resources in the Advocacy Space
Better care starts with faster diagnosis, insurance reform and honest conversations about what living with gout really means.
By
Lana Pine
| Published on May 21, 2025
3 min read
Gout isn’t just a painful flare-up or a punchline about overindulgence — it’s a serious, chronic condition affecting more than 9 million Americans. But according to Steve Taylor, president and CEO of the Arthritis Foundation, and Josie Cooper, executive director of the Alliance for Patient Access, too many patients face delayed diagnosis, stigma, misinformation and barriers to care.
Both leaders have firsthand knowledge — Taylor as a patient and national advocate, and Cooper through years of patient-centered coalition building. Their message is clear: Gout is real, it’s chronic and it’s often misunderstood. But with better education, policy reform and patient support, we can turn the tide.
One of the biggest hurdles Taylor faced was simply getting diagnosed. His own experience included multiple misdiagnoses — emergency room doctors attributing classic symptoms to running injuries — before finally learning he had gout. In fact, he ended up on a morphine drip before anyone called it what it was.
Cooper echoes this problem, saying that many patients either aren’t diagnosed or don’t know they need a specialist like a rheumatologist. Primary care physicians and urgent care centers often miss it. And when patients do get diagnosed, they may not fully understand what they’re dealing with. She says that people think the disease goes away when the pain goes away. But gout is a whole-body condition, and if left unmanaged, it can lead to heart disease, kidney problems and joint damage.
Even after diagnosis, challenges remain. High-cost medications, step therapy and prior authorization hurdles keep many patients from accessing the treatments their doctors recommend. Additionally, Cooper says that providers and advocacy organizations need to make sure patients know what’s available to them — whether that’s treatment options, how to file an appeal or how to seek a second opinion.
Both organizations offer robust educational tools and advocate for patients at the state and federal levels. From webinars to digital resources to online support groups, they help patients understand their disease beyond flare-ups.
The path ahead is clear: increase awareness, improve access to specialists, reduce insurance barriers and ensure every patient knows they have options. As Cooper says, “We have great treatments and amazing doctors. Now we just need to get patients to them faster.”
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