In this episode of Patient Voices In Pharmacy, Virginia Maxwell shares how a lifelong ultra-rare skin disorder shaped her childhood, her parenting, and eventually her advocacy. In this conversation with host Loretta Boesing, she explains how PBM formulary changes, copay accumulators, and insurance denials can turn stable treatment into a constant crisis.
They also break down the system in plain language, from what a PBM does to why specialty medication and mail-order rules can put patients and independent pharmacies at a disadvantage.
Key topics
Virginia shares her diagnosis as a baby with an ultra-rare disorder called pityriasis rubra pilaris, which affects her skin, joints, and possibly other organs.
She describes growing up under constant medical attention, including a severe penicillin reaction at age 12 that led to an 88-day stay in a burn unit.
Virginia explains how she became a patient advocate, helping grow a rare skin disease support group from fewer than 10 people to about 400 members worldwide.
She talks about raising three children who all inherited the same disorder and why she believes being a parent in this situation is harder than being the patient.
She details how biologic medication changed her life, taking her from being nearly unable to function to seeing dramatic improvement in about 30 days.
Virginia shares the struggle of getting her children approved for treatment, including one case that took two years of appeals.
She explains how PBMs can change formularies, remove stable medications, and leave patients with no real choice—even when doctors say a drug is lifesaving.
Loretta and Virginia discuss copay accumulators, why manufacturer assistance may not count toward out-of-pocket maximums, and how that can force families to pay thousands of dollars.
Virginia describes testifying before the South Carolina PBM reform committee and the misinformation she says lawmakers hear from insurance lobbyists.
They discuss how local independent pharmacies, pharmacists, and advocacy groups help patients navigate access barriers and stay on treatment.
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