Boehler shares his story.
On Aug. 7, a group of three U.S. Pain Foundation representatives with osteoarthritis (OA) and one caregiver joined Director of State Advocacy & Alliance Development Shaina Smith to speak about the challenges of the disease before senior officials within the U.S. Food and Drug Administration (FDA). The meeting was held at the FDA in Silver Spring, MD.
Earlier this year, U.S. Pain had requested the FDA’s Patient Affairs division host a patient listening session focusing on the unmet needs of patients with OA, which affects more than 30 million Americans. The FDA accepted the request, with 24 officials attending the listening session in-person and via conference call.
“We wanted to make the FDA aware of how limited Americans with OA are when it comes to therapy options available to manage the disease and its associated symptoms,” explains Smith. “The patient listening session afforded our volunteers the chance to speak intimately about their struggles with noninvasive, prescription, and even surgical interventions to mitigate the pain that OA causes.”
U.S. Pain reached out to partner groups well-versed in the area of OA to join via conference call, including: Arthritis Foundation, HealthyWomen, National Kidney Foundation, and the National Council on Aging.
“Because of our unique health needs, we do not have a lot of options available to us and the therapies that are on the market come with health risks, are too expensive, are not covered by insurance, or have shown little improvement to our pain levels and OA management,” said Rebecca Kavanaugh Stubbles, one of the U.S. Pain representatives who attended.
Stubbles indicated that she, like so many others with OA, have other underlying medical issues that make treatment complicated.
Kelly Lewis agreed, saying that managing the pain from OA has been problematic because there are few options for her, due in part to the other diagnosis she lives with, including chronic kidney disease. “This has made it difficult to maintain a consistent quality of life,” Lewis said.
The group poses in front of the FDA.
Likewise, Bob Boehler openly revealed his journey with chronic pain, prescription medication complications, surgery journey, and kidney failure. “Despite all of these pain management strategies, I was never pain-free,” Boehler explained, noting how he had previously been prescribed pain medication; he only recently was able to manage his pain levels through herbal remedies. “I can’t help but wonder whether there might be medications that could be made available to provide alleviation without strong side effects,” Boehler said.
Boehler’s wife and caregiver, Cindy, also joined the meeting.
The FDA patient listening session included a presentation from Smith relating to survey findings from related data collected by U.S. Pain last year, in addition to research statistics relating to OA.
The meeting ended with Smith noting that Americans with chronic pain and OA are a particularly vulnerable patient population. She encouraged the FDA to continue collaborating with patient and provider groups to promote more research and new therapies.
“We are incredibly grateful to the four individuals who volunteered their time and energy to come represent the patient community,” says Nicole Hemmenway, Interim CEO of U.S. Pain Foundation. “We also sincerely appreciate the FDA for creating opportunities for patient voices to be heard.”
To learn more osteoarthritis, visit our Learn about Your Pain page or check out the INvisible Project: Osteoarthritis and Chronic Low Back Pain edition.