Oct 24, 2023
By Brian Persing, MD
With the plasma-based molecular testing in hand, I was excited to inform my octogenarian patient with stage IV lung cancer that she had a mutation and wouldn’t need intravenous therapy. I happily dropped an order for a third-generation tyrosine kinase inhibitor, only to have the insurance company drop the line that the therapy wasn’t their preferred treatment and they wouldn’t cover it. With the article published months ago, guidelines already adapted to include this drug first-line preferred category 1, and unparalleled progression-free survival, I sat there in silence and disbelief. As we spoke, the patient relayed her disappointment as well; she had pleural-based masses that were eroding through her ribs, and we knew this therapy would achieve control quickly and improve her quality of life. Resigned to a fight, we proceeded with palliative radiation to the most painful sites. After nearly a month, we were able to get her treatment approved.
So many physicians are angry, disgruntled, and disenfranchised about insurance creeping in and determining therapeutic options for patients. We throw our hands up; we can’t do anything about it... WRONG.
Our advocacy journey starts quietly, first with listening, and then championing for our patients. What I didn’t realize, when I said yes to serving on the Mississippi Oncology Society’s (MOS) Board, is that even with a quiet voice, we can make a difference, and our collective voice drowns out those not interested in improving the quality of life that our patients deserve. The MOS is the state’s professional society that represents cancer specialists and addresses needs and issues that arise in taking care of patients with cancer.
That yes to MOS led to another yes: I began acting as a representative for the state society on ASCO’s State Affiliate Council (SAC). The Council serves as an advisory group to the Association for Clinical Oncology’s Board of Directors. It brings representatives, typically one physician and one executive from each state society, together formally two times a year as well as less formally through myAffiliates and the State Society Network on the ASCO myConnection platform. The SAC acts not only as a repository for best practices and vital networking, but also as a clearing house for emerging legislative, regulatory, and practice issues from different states. It offers a path for two-way communication, getting information to ASCO leadership, staff, and state society representatives quickly.
At my first SAC meeting, group members started speaking a foreign language that included terms like pharmacy benefit managers, step therapy, brown bagging, white bagging, and on and on. There was another side to medicine never covered in medical school, residency, or fellowship.
At that same meeting, an ASCO Government Relations Committee member discussed plans for the upcoming ASCO Advocacy Summit, where invited ASCO members meet with federal legislators and their staff to discuss barriers to care. Once again, another yes.
My journey to Capitol Hill was eye-opening. Every office we entered welcomed us, while legislators and their staff valued our input as advocates for our patients. I shared my story about my octogenarian patient. Many of the aides were appalled with the trauma and delays that my patient endured due to step therapy requirements, which was one of our four messages to Congress (or “asks,” as I later learned to call them). The other three were addressing prior authorizations for Medicare Advantage beneficiaries, expanding access to clinical trials, and continued robust funding for the National Institutes of Health (NIH) and National Cancer Institute (NCI).
In retrospect, the passage of clinical trials coverage legislation made it all seem worthwhile; however, when I returned to my community-based practice, I had colleagues asking how I could afford to take time away from practice. After a brief pause, I responded, “How can we not afford to advocate for our patients?” I explained that if any of the legislation were successful, it would streamline burdensome processes that take our time away from patients and their families. The following year, COVID-19 hit; our advocacy became virtual but remained impactful.
The power of grassroots advocacy in state legislatures became apparent to me as well. Each state legislates insurance policies for state-based plans, providing us an opportunity to use our voices as state societies. This year lawmakers introduced prior authorization legislation in Mississippi. We placed our fertility preservation legislation on hold and threw our support behind prior authorization legislation. It garnered nearly unanimous support from legislators but was ultimately vetoed by the governor.
Earlier this year, I had one more advocacy yes. The House Appropriations Subcommittee for Labor, Health and Human Services, and Education heard public witness testimony about federal funding for programs within its jurisdiction. Since the chair was from Alabama, where I presently practice, ASCO’s Policy and Advocacy team asked if I would testify at the hearing about the importance of federal funding for cancer research. I replied yes. They reassured me that very few people are selected to testify and that it would be unlikely that I would be chosen. After several weeks passed, I had forgotten about it until an email appeared in my inbox, requesting that I submit conflict of interest information and written testimony. The subcommittee members expressed support for my statement and I had good follow-up conversations with the subcommittee leaders.
All of this has been truly humbling and enlightening after 10 years of practice with little engagement outside of patient care.
There are so many opportunities to volunteer, whether on a state or national level. The earlier you make volunteering and advocacy part of your DNA as a physician, the greater the impact you will have. Most state societies have programs for students, residents, or fellows to become involved. If you’re unsure, there is a way that you can identify your state society and initiate the discussion online. The SAC leadership includes a fellow to provide insight on issues impacting early-career oncologists. Fellows are also participants at the ASCO Advocacy Summit. No matter where you are in your professional career, you can easily incorporate advocacy into your day by using ASCO’s ACT Network to send messages to your legislators about topics that are important to you and your patients.
There is always a need for volunteers and there is no greater reward than advocating for our patients and our profession. My only regret is that I didn’t start earlier. Join me in making a difference in our profession and the lives of our patients.
Dr. Persing is a practicing hematologist and oncologist at the University of South Alabama Health as an assistant professor and chair of the Division of Hematology and Oncology. He is currently the chair of the ASCO State Affiliate Council and treasurer for the Association of Clinical Oncology. Follow him on Twitter @DrBrianPersing.