SGO members meeting with Representative Madeline Dean
For the past eight years, SGO volunteers have come together in person and virtually to meet with members of Congress and their staff, advocating for critical legislative actions related to women’s health. During the 8th Annual Capitol Hill Day on September 18, 2024, 49 advocates participated in 77 virtual meetings with representatives from both houses of Congress and both sides of the aisle. This year, SGO had two requests for lawmakers:
- Support comprehensive legislation to prevent future chemotherapy shortages
- Support a bipartisan and bicameral process to reauthorize the National Institutes of Health (NIH)
Judy Cacciola, patient advocate, and Anna Jo Smith, MD, MPH, a gynecologic oncologist and assistant professor at the University of Pennsylvania, worked as a team, virtually meeting with five Pennsylvania Congressional offices. Below is an account of their experience.
CACCIOLA: This was my second year serving as a patient advocate on Capitol Hill Day and partnering with Dr. Smith. Being part of this event is incredibly meaningful to me—not only because it allows me to give back, in some small way, to the doctors and researchers who I credit with my life, but also because it is uplifting to witness the genuine interest from legislative staff members. Engagement was obvious as most posed smart questions and asked for additional information. I was particularly moved when Representative Madeline Dean (D-PA-4) personally attended our session—both this year and last. It feels empowering to be heard and to know our voices are making a difference.
SMITH: This is my third year participating in Capitol Hill Day and second partnering with Judy Cacciola. Our asks this year around chemotherapy shortage and general women’s health research were particularly compelling and engaging, and each Congressional office asked detailed questions. We walked away (a.k.a signed off Zoom) feeling heard and with commitments to further the work of SGO to improve gynecologic cancer care.
CACCIOLA: For me, one of the most enjoyable aspects of this day was listening to Dr. Smith. Her knowledge and passion about women’s health are evident and inspiring. While SGO provided us with talking points, and while I was familiar with the two issues for which were advocating, Dr. Smith shared specific examples and compelling stories to drive home their importance and potential impact. For instance, when discussing the need for a thorough bipartisan and bicameral process for the reauthorization of the NIH, Dr. Smith explained how important NIH research on menopause affects young women who experience surgical menopause—research that could be disrupted by the currently proposed reorganization. Or, when discussing the chemotherapy shortage, Dr. Smith’s knowledge and experience about the rise in uterine cancer among younger women added a new dimension to a familiar problem.
SMITH: My first year as an attending gynecologic oncologist was the year of chemotherapy shortages, especially for carboplatin. There are lots of things you worry about as a new attending, and the chemotherapy shortage was a deeply impactable problem that I have never even considered experiencing in the United States. Legislative staffers appreciated the patient stories I shared and the specific solutions that SGO, under the leadership of Drs. Secord and Fader, have brought to the table. Thank you as well to our legislative advocacy staff who provided data on the impact of Capitol Hill Day and other insight requested by Congressional offices.
CACCIOLA: I cannot begin to imagine what it would have been like, when I was facing the devastating diagnosis of stage III ovarian cancer, to be told that first-line treatment is unavailable. It’s equally heartbreaking to consider the helplessness an oncologist must feel when unable to provide the necessary care for their patients. For an issue like this, I’d like to believe that a patient advocate brings a sense of urgency and immediacy to the problem.
SMITH: I am always grateful and inspired to work with patient advocates, and Judy’s journey reminds me each time of why we do the work we do clinically and in research as a gynecologic oncologist. She inspired each legislative staff member and me in each session.
CACCIOLA: At the end of the day, I was heartened that every session ended with our interviewee asking to keep an open dialogue with SGO. It was clear from the thoughtful questions they asked and the attention they gave us that there’s a real need for ongoing education on these issues. It felt like we were making a connection and laying the groundwork for meaningful conversations moving forward. It’s encouraging to see that there’s genuine interest in understanding and addressing these complex challenges together. I am looking forward to next year.
SMITH: Each year, Congressional members seem more engaged in gynecologic cancer issues and improvement of patient outcomes. I would encourage SGO members to participate in Capitol Hill Day, ad hoc meetings, and legislative outreach through the year—Congress cares about our work and listens!
Judy Cacciola is a patient advocate in Bethlehem, PA, and Anna Jo Smith, MD, MPH, is a gynecologic oncologist at the University of Pennsylvania in Philadelphia, PA.