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.
Going to Capitol Hill and speaking to my state representatives, all of these memories and fears fired their way to the front of my mind and soul. When I got onto the plane and started to think about how this trip would go, and what stories I would share, I started to cry. I didn’t realize how deep I had to bury these feelings, and how quickly they take over once I give them the smallest space to appear.
I knew it would be difficult going to the North Carolina reps. Some of these folks vote against what seems like every good policy, even some that support their own voters. One rep wouldn’t give us a meeting, even after I had called several times. When we stopped in to speak to them, not only would they not give us a representative to speak with, they wouldn’t even let me take a picture. Not even after I shared that my three-year-old had snuck a Hot Wheels car into my carry-on bag, and I was taking pictures with it around the Capitol.
Alex Fanning documented his son’s toy car’s trip around Capitol Hill.
It’s hard to feel heard and seen in this country right now, and it doesn’t feel good knowing what this means for me, my family and my future. But joining this trip, this cause, I get to come home and hug my family, knowing that now when the North Carolina representatives vote on the policies we spoke about with them, they’ll cast their vote with my face, my voice, my story in their mind. And maybe—maybe they’ll vote in favor of the people, and give my kids a chance to know me when they’re adults as the fun, active dad.
The ACR gave me the opportunity to share my story and let the patients and doctors be heard on Capitol Hill, and I’m grateful.
Let’s run it back next year. I know I’ll have a new Hot Wheels car to tour around the Hill, and a few new friends to visit again.
