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Recently passed federal legislation created more transparency and accountability in health care. It’s time to pull back the curtain on an equally harmful component of care access: prior authorization reform.
I’m an Ehlers-Danlos Syndrome (EDS) rare disease patient and disability advocate. EDS is a genetic disorder that weakens connective tissue throughout my body. I experience hypermobility, easy bruising, and countless internal complications. There is no known cure. To manage my EDS, I take an average of 15 daily medications and rely on physical therapy two to three times a week to maintain strength and mobility.
Until recently, I was able to be fully insured as part of my father’s ERISA (Employee Retirement Income Security Act) healthcare plan. This year, I found out I would no longer be covered. Thankfully, I have been able to switch over to my husband’s insurance with Regence, but it has come with drastic transitional costs.
I was only given five weeks to transition my care between insurance plans. Under my Premera plan, I paid around $500 a week for my daily IV infusion supplies and medications. Under my new Regence plan, those same supplies and medications now cost $1,300 a week. Upon learning about this drastic cost change, my husband and I raced to fundraise and refinance to find almost $2,000 to meet my new deductible. The cost of my care almost tripled overnight.
Panicked about the rising costs of switching insurance providers, I rushed to make appointments for vital surgeries and screenings before I left Premera. I met with my care team to discuss what could and could not be covered once I switched to Regence: Many of my specialists were suddenly out of network. My geneticist drafted an advocacy letter on my behalf, detailing the impacts of EDS and the optimal care routine in an effort to increase physical therapy options for me under my father’s insurance successfully. Still, sending Regence this letter, I heartbreakingly learned that my standard of care would suffer with this insurance change. My new insurance afforded only 60 annual visits to a physical/occupational/and speech therapist as opposed to the necessary 100+ to manage EDS. Having less physical therapy with connective tissue disorders and hypermobility in my lived experience has led to more injuries, ER visits, potential repair surgeries for stretchy tissue issues, and increased physical disability and relentless pain. Anything that fell under “prior authorization” when it came to specified care under Premera now needed to be assessed by Regence.
In the weeks since my new insurance plan took effect, I have not been able to seek needed physical therapy. Long wait times for referrals and the lengthy prior authorization process under a new plan means I must take a step back in treating my rare disease while I wait for approval from Regence. Changing insurance has proven to be a full-time job on top of what already is a full-time job living as a disabled patient.
Luckily, health care reform has the spotlight in Congress this year. We’ve made tremendous strides already with the passage of Pharmacy Benefit Manager (PBM) reform in January 2026, which brought much needed transparency to an otherwise opaque middleman who profited off of the doctor-patient relationship and prescribed care. Now, it’s time to focus on holding insurers accountable. Too many patients are held hostage by drawn-out referral processes, bureaucratic hang-ups on prior authorizations for specialized care, and switching of crucial prescription medications without patient or doctor consent.
To our Washington delegates: The fight doesn’t end here. Put a stop to prior authorization abuse and protect patients.
Sarah Tompkins, Rare Disease Patient and Disability Advocate
