A Look Inside the Advocate Experience at Advocates for Arthritis

On Tuesday, Sept. 28, I visited Capitol Hill virtually as part of the annual Advocates for Arthritis “fly-in” to discuss the ACR’s legislative agenda to improve patient care. The previous afternoon, ACR advocacy leaders and staff led an interactive training webinar where the other advocates and I dived into the big issues and learned some easy best practices for approaching our virtual Hill meetings. The main issues for this year’s conversations were to increase transparency and reform prior authorization and prescription drug pricing. This was my third time working with the ACR on an advocacy day, and I kept a journal of my experiences throughout the day to document what virtual advocacy looks like as I spoke with congressional offices in New Jersey and Connecticut.

Dr. Dein

8 a.m.: With a busy day on tap, I’m ready to see my first patient. She is a new patient for evaluation of psoriatic arthritis. When I shake her swollen hand, she winces in pain. She tells me that she had been doing great on guselkumab for psoriatic arthritis, until she switched jobs and insurances. Her new insurance requested a new prior authorization, and she has been off of medication. She is worried now that she will have to stop working due to her symptoms.

10:45 a.m.: After finishing with my morning patients, I log on to Soapbox, the digital platform that coordinates the meetings on the Hill. I meet Deborah Desir, MD, a rheumatologist at Yale Medicine and secretary of the ACR’s Executive Committee, who will be joining me in our advocacy efforts today.

11 a.m.: Go time! Our first meeting is with Gloria Nuñez, legislative correspondent for Sen. Cory Booker (D-N.J.). Dr. Desir begins with the first ACR legislative agenda and outlines the convoluted process of obtaining prior authorization for starting new patient medications. She describes the frustration in conducting peer-to-peer discussions with payer physicians who are not trained in rheumatology. Ms. Nuñez was not aware that the House of Representatives had proposed legislation to improve the transparency and efficiency of prior authorization process in Medicare Advantage plans, and we asked that she talk with Sen. Booker about supporting a Senate companion bill.

11:30 a.m.: After a good first meeting, we meet with the office of the other New Jersey senator, Sen. Robert Menendez (D-N.J.). We meet with his health legislative correspondent to again discuss the ACR legislative issues. I describe the process of how pharmacy benefit managers (PBMs) act in between pharmacies, insurance companies and drug manufacturers. The companies negotiate rebates with drugmakers and select the best financial deal for the PBM, an industry that makes nearly $500 billion per year. These rebates do not get passed along to consumers, and drug prices continue to rise greater than the pace of inflation. When I select a medication for my patient, I chose from their insurance’s preferred medication list, which is based upon these drug rebates rather than medical studies of efficacy or safety. Sen. Menendez’s office was interested in decreasing drug pricing and was surprised to learn that PBMs directly impacted clinical decision making.