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.

11:55 a.m.: I log off my computer for lunch and celebrate my medical assistant’s birthday with cake.

1 p.m.: Next up, we meet with the office of Sen. Richard Blumenthal (D-Conn.). By our third legislative meeting, Dr. Desir and I settle into a rhythm of telling stories of how these issues impact providers and patient care. The legislative correspondent, Josh, is very familiar with these issues and says the senator supports these measures. He asks detailed questions about the specific ways in which the prior authorization bill seeks to improve the process through reporting statistics, making real-time decision making and transitioning to electronic prior authorizations.

1:45 p.m.: I check MyChart and find a message that, although my appeal for tofacinitib for a patient was finally approved, the patient will not be able to afford the medication.

2 p.m.: During my break time, I meet a new patient in clinic with Sjögren’s syndrome, who is very excited to learn that I spent my morning doing advocacy work. I tell her patient advocates are great additions to advocacy days to be able to communicate their experiences in the health care system.

3 p.m.: We meet with the office of Sen. Chris Murphy (D-Conn.) and continue to share our stories. His office staff are surprised to learn that the proposed PBM legislation only seeks to have public reporting of PBM drug rebates and discounts to better understand the system. I agree that further action is likely needed for regulation but starting with a more transparent system is an easy first step.

3:30 p.m.: Dr. Desir and I split up and each meet with our House representative—for me, Rep. Tom Malinowski (D-N.J.). At this point, I can easily recite through the talking points. Once again, I get a great response and a lot of interest, with many follow-up questions about the legislative requests.

4 p.m.: Done for the day! Five congressional meetings and three patient visits make for a busy day. The virtual Capitol Hill visits made it easy for me to see patients and work out of my office, but I hope that we soon return to in-person advocacy and get to meet the other physician and patient advocates.

Eric Dein, MD, is a rheumatologist at the Institute for Rheumatic & Autoimmune Diseases, Overlook Medical Center, Summit, N.J.