If I die, scatter my body parts in front of all these company's locations
I’m an expert on Still’s Disease, both as a researcher and as someone living with it since childhood. Despite this, I’ve spent the past six months fighting to access the biologic medication that keeps my rare autoinflammatory disease in check. Short of explaining all the ways Still's Disease is terrifying, this medication literally keeps me both stable and alive. After six month of fighting, I still don’t have it. My uncontrolled disease is running rampant. The excess inflammation is worsening the bulging cervical discs I have, causing immense pain on top of endless frustration. Between a self-funded insurance plan through my spouse's employer, the plan's administrator, delays from the pharmacy benefit manager, and a lack of urgency from those with the power to help, I may not receive my medication before traveling to Spain next week for the OMERACT meeting — a meeting focused on improving health outcomes for rheumatology patients. Despite my relentless efforts to navigate the system, I’ve been met with silence, slow responses, shifting responsibility, and even apathy. This never should’ve happened in the first place. I was previously receiving Ilaris from the Novartis patient assistance program. They ended these programs for anyone with private insurance at the end of 2024, leaving countless patients like me without a safety net and in excruciatingly declining physical and emotional health. If someone like me — someone who knows the disease, the system, how to advocate — has this much trouble accessing essential care, I can’t help but wonder how many others are quietly struggling or have been forced to switch back to a medication that was not effective. Despite how people view me as positively stubborn, I've been struggling with feeling forgotten, dismissed, and being too exhausted or in pain to handle all of this. I don’t know what else to do anymore. The hundreds of hours I've spent coordinating between my provider, the PBM, the insurance plan administrators, and even my spouse's HR representative all feel like they've been for nothing. What I do know is that this isn’t right. This system must change, and it has to prioritize people's lives over profits. Patients deserve better. I deserve better — especially when the consequences of not having medication can be fatal. Note: Everything I share here reflects my personal experience and views — not those of my employers, collaborators, or any organizations I am affiliated with. I’m speaking for myself, sharing a deeply real, painful, and ongoing struggle that has taken an immense toll on my health, my hope, and the joy I had for this year.