During this busy summer, I have spent some time traveling to different meetings. In late June, I was lucky to represent NSGC at the Genetic Alliance’s Day on the Hill as well as their Annual Conference.
During the Day on the Hill our task was to visit with legislator’s staff members and educate them on legislative issues of great importance to the Genetic Alliance, advocacy groups, healthcare providers, and patients and their family members. We were organized into regional groups with an experienced leader from the Genetic Alliance and met with staff members of Congressmen from our regions. We were coached and guided on talking points about the key issues by our well versed group leaders. Like many of you, I had never been to the offices of our legislators and was nervous and excited to see where the “action” of our government takes place. I was especially excited to contribute, even in a small amount, to those actions. My group leader was NSGC Past President Diane Baker who was a fabulous mentor. She showed us how to present the information in concise yet complete summaries and when possible bring in examples of how legislator’s constituents could be affected by these bills. I had the opportunity to also let these staff members know that NSGC is in the process of introducing a bill to amend the Social Security Act to allow genetic counselors to be billable healthcare providers under the Centers for Medicare and Medicaid Services.
During the Day on the Hill, I learned much about some important issues that we need to open our legislators’ eyes to, and I also learned not to be intimidated or anxious about approaching these individuals with our issues. They need us to provide background and information about these issues in order to cast a meaningful vote. Legislators want to hear from us and were gracious and interested in our issues. Our legislators need you to tell them what is important to you, your organization, and your patients and families!
During the Genetic Alliance conference I was a member of a panel in a symposium titled, “Services Day.” The purpose of this workshop was for participants to come away with action items for how to collaborate and advocate across communities, conditions, and state lines. As a result we will all be better prepared to forge the future for services centered on the health and wellbeing of families. An exceptional group of presenters on a wide variety of topics resulted in this being an uplifting, inspiring day. As a pediatric genetic counselor, I learned much in terms of available services, contacts for the families with whom I work, and possible improved clinic models. I chastised myself for not attending this conference in the past –the greater number of patients I could have supported with this information if I’d been attending and learning from this conference for so many years! I also had the opportunity to educate conference participants on what genetic counselors do and some of the services we provide.
Participating in the Genetic Alliance conference events was a wonderful opportunity for me to represent NSGC and genetic counselors and to learn from the other individuals at the conference. I would encourage all genetic counselors to attend the Genetic Alliance conference and to participate in a Day on the Hill through the Genetic Alliance or another organization, at least once in your career.