For most of her life, Amy was a “busy mom on the go,” keeping up with the chaotic schedules of her four children. But in her 40s, her body began to fail her. What started as unexplainable aches soon turned into debilitating joint swelling that left her bedridden and unable to participate in the life she loved. After years of being misdiagnosed, a new rheumatologist discovered the truth: Amy’s uric acid levels were four times the normal limit. She was diagnosed with Chronic Gout—with uric acid stones formed throughout her body—and Rheumatoid Arthritis (RA). In a strange twist of fate, the extensive testing for her gout led to the early discovery of renal cell carcinoma, a diagnosis Amy says “saved her life” by catching the cancer while it was treatable.
However, finding answers was only the beginning of a new battle. Amy soon found herself at war with insurance companies over Step Therapy and Prior Authorizations. She was forced to “fail” on cheaper medications and endure “non-medical switching” that delayed her access to the treatments her doctors prescribed. Amy notes with heartbreak that the permanent damage to her body—the fact that she now needs a motorized scooter for shopping and can no longer hike—is a direct result of the “wait game” forced upon her by insurance adjusters.
Today, Amy is no longer a passive patient. She has channeled her frustration into leadership, serving as a moderator for the Gout Support Group of America and the Krystexxa Support Group. She is a fierce advocate for women’s health, working to break the stereotype that gout only affects men. With the support of the Infusion Access Foundation (IAF), Amy is fighting to ensure that medical decisions are made by specialists, not insurance companies. Now, when her medication is approved and accessible, she is back to being the active grandmother her grandchildren deserve, proving that while her body has been tested, her spirit is unbreakable.