On Tuesday, May 6, more than 100 members of the rheumatology community participated in 118 meetings with lawmakers from 26 states—urging members of Congress to sustain research funding, address cuts and stabilize Medicare reimbursement, enact pharmacy benefit manager (PBM) reforms and protect Medicaid funding.
Ms. Barron
“Most of the offices we visited agreed that PBM profits are alarming,” says Amy Barron, RN, a patient advocate and ARP member. “Something must be done to protect patients regarding PBMs driving up prescription drug costs.”
ACR members from Florida with Rep. Jared Moskowitz.
ACR members from Iowa with Rep. Mariannette Miller-Meeks, MD.
ACR members and patient advocate Amanda Greene with California Rep. Ted Lieu.
Jessica Fennell, ACR Past President Deborah Desir and Connecticut Rep. Rosa DeLauro.
ACR members with Illinois Sen. Tammy Duckworth.
A Patient’s Story
My name is Alex Fanning, and I’m a patient advocate and stay-at-home dad. My rheumatologist, Jayanth Doss, MD, MPH, of Duke University, contacted me [about Advocates for Arthritis] a bit last minute. With credit to my amazing wife, I was able to join the group in D.C. while she watched our three-year-old son and 10-month-old daughter, while working a contract job and seeking full-time employment.
Mr. Fanning
I spend most of my day avoiding the thoughts regarding my condition. I was 31 when I found out I had psoriatic arthritis, and by the time I made it to Dr. Doss’ clinic at 36, my condition was labeled “severe.” I’m on my 14th or 15th medicine, and when the meds aren’t working, I can’t pick up my kids. I can’t turn on a faucet. I can’t play guitar, I can’t walk around the house, I can’t really exist. There have been so many times where the medicines weren’t working, and while I wait for the clinic to battle the insurance coverage, I slowly decay into misery. I avoid the memories of these several occasions, but I still take time out of each day to be thankful when they are working. I have not forgotten the painful, stiff, zombie walk when I get out of bed, how miserable I am because everything hurts, how I can’t contribute a single thing as a spouse and father when my condition is getting the best of me.
