Greetings, Patient Advocates!
After three rewarding years serving as chair of the Government Affairs Committee (GAC) for the American College of Rheumatology, it is bittersweet to announce that this is my final post. Later this month, we will welcome Dr. Blair Solow (@BlairSolowMD) as the new GAC chair, and Simple Tasks advocacy efforts will continue under her capable leadership.
As I was reflecting on what I wanted to say in my final post, I kept thinking about the amazing patients I have met through this role. It is relatively easy for rheumatologists to talk to lawmakers about our experiences as doctors. It is another thing entirely for patients to share intimate and sometimes painful details about their private lives and medical histories with a roomful of strangers – all for the sake of helping others. That takes real courage and fortitude, and I’ve been honored to share the podium with patient advocates during Congressional briefings, hearings, and meetings with lawmakers.
Great day on Capitol Hill with amazing rheumatologists(including my own!), speaking with Maryland lawmakers about issues relating to health care and rheumatic conditions. So excited to participate in the process.#RDAM,#Act4Arthritis,#Simpletasks pic.twitter.com/xR2IMg6tVs
— Laura Torchinsky (@Lwtorchi) September 10, 2019
I’ve also learned a few things about advocacy along this journey. First, every voice matters. From the moment a rheumatologist or person with arthritis decides to speak up about an issue, to the moment our collective efforts culminate in a victory on Capitol Hill, there is no substitute for the power of individual voices and stories. Margaret Mead was right when she said, “Never doubt that a small group of committed citizens can change the world, indeed it is the only thing that ever has.” Your voice and your story matter.
Thanks Senator @DougJones
for leading #StepTherapy reform! Alabama team
advocates including Drs. Crayne & Schnell also spoke about solving the workforce shortage so kids can see a specialist when they need it!@schnell_amanda @CrayneCB @UABRheum pic.twitter.com/VNE7Oh5Qzs
— Angus Worthing MD (@AngusWorthing) September 10, 2019
Second, I’ve learned that despite the hyper-partisanship in Washington these days, it is still possible to find common ground when it comes to issues of patient health and wellbeing. The solutions we advocate for in the rheumatology community are common-sense, bipartisan initiatives that leaders on both sides of the aisle can support. We cannot allow ourselves to become jaded by what sometimes feels like a polarized political environment. Change is not easy, but it is possible.
Finally, there is never a dull moment in the world of advocacy. It is exciting, exhilarating and rewarding work that introduces you to fun, interesting and energizing people. Getting the chance to travel and meet dedicated rheumatologists and patient advocates across the country (including in Alaska!) has been a highlight of my time as chair. I am so grateful and very proud of the successes achieved by our team of staff, volunteers, and grassroots advocates during my tenure. Here are just a few highlights:
- Successful adoption of a 365-day lookback period under Medicare Part B that ensures patients currently receiving in-office medications through Medicare won’t have to go through step therapy.
- Growing our Simple Tasks advocate network to include patients from all 50 states who are ready and willing to reach out to their Members of Congress and local media.
- Media coverage in the New York Times about the undervaluing of complex rheumatology services in Medicare. The story, along with our other advocacy efforts, helped convince the Administration to make changes that will help protect patient access to high-quality rheumatology care and services. (Plus, I got to show my mom that I made the paper!)
- A highly technical, yet critical correction in legislation that ensures doctors are not penalized by Medicare for prescribing specialty drugs to patients.
There are many more successes, but these are just a few. And of course, challenges remain. We need to improve patient access to breakthrough drugs and lower specialty drug costs. We need policies that promote the use of safe and effective biosimilars, and that prevent pharmacy benefit managers from receiving kickbacks that drive up drug costs. We must protect access to innovative and inexpensive diagnostic technology that helps diagnose osteoporosis and make sure patients can see a rheumatologist when they need one.
I am looking forward to seeing Dr. Blair Solow, our incoming chair, guide the ACR’s advocacy efforts to new heights. Dr. Solow is a rheumatologist, researcher, and educator at UT Southwestern with an even longer advocacy resume – including helping to build the first-of-its-kind advocacy bootcamp for rheumatology fellows in training for the ACR.
And although I am stepping down as chair, I am not stepping away from advocacy. You can always find me on Twitter at @AngusWorthing, and I look forward to working alongside each of you to address these critical issues in the years to come.
Take care – and thank you for helping the American College of Rheumatology #Act4Arthritis.
Angus Worthing, MD