Advocacy Lesson: Associations Making a Difference in Legislative and Regulatory Decisions

by SmithBucklin

By Meghan Carey, director, Healthcare + Scientific Industry Practice and executive director of the National Society of Genetic Counselors 

Association News_LogoAssociation boards and staff are all too familiar with the opportunities and challenges involved with implementing new regulations for legislation such as the Affordable Care Act. The industry professionals who lead associations, in this case particularly healthcare and medical associations, must be in tune to what is happening in order to help their members advocate for their profession and navigate the often confusing legislative and regulatory landscape.


From understanding how these government decisions will impact the overall industry to involving members in every step of the transition process, changes in legislation can significantly alter how an association supports the day-to-day work of its members. What follows is an example of how the National Society of Genetic Counselors (NSGC), an organization that promotes the professional interests of these medical specialists, successfully helped execute legislative and regulatory advocacy within its association.


The Challenge: Preparing for Legislative Decisions. Regardless of industry, associations need to adopt a governance culture and structure that emphasizes speed, strategic thinking, accountability and flexibility. A few years back, genetic services were rapidly expanding into the broader healthcare system, and the growth and relevance of the genetic counseling profession were at risk of stalling or being severely curtailed without the coordination of three strategic issues to help determine the future of the profession: state licensure for genetic counselors; recognition of genetic counselors as authorized providers under Medicare by the Centers for Medicare & Medicaid Services (CMS); and reimbursement from third-party payers for services provided by genetic counselors. If the NSGC’s leadership hadn’t had been prepared to confront these issues in a prompt and organized manner, its industry could have suffered significant setbacks.


The Solution: Engaging the Membership for Action. When advocating for any industry, associations can make a difference in legislative and regulatory decisions by ensuring that their members’ voices are strategically heard. In the case of the NSGC, effective and efficient movement on all three strategic initiatives depended on establishing the value of genetic counselors to patient care and within the healthcare industry.


Association leadership worked closely with NSGC volunteers to align the society’s various initiatives (such as education, public policy, guideline development and communications) with its overall strategy and goals. Its main priority was to demonstrate the value of genetic counselors. Staff also worked with the NSGC board of directors to review and revise the existing strategic plan to intently focus on the most pressing professional issues. The plan was prioritized to establish initiatives that involved the board, committees and a grassroots network of NSGC members—all key contributors to the plan’s success. By aligning the NSGC’s strategy with all aspects of its service delivery, both members and staff maintained focus on the key issues facing the profession.


The Result: Realizing Success. Associations that are proactive and initiate action to impact the legislative and regulatory process deliver high value and considerable reward to their membership. As a result of its strategic alignment and significant member and staff involvement, the NSGC is realizing tangible and meaningful outcomes. The NSGC has achieved state licensure in 18 states, established an evidence base for the value of genetic counselors per the request of the CMS and attained reimbursement for genetic counselors from several regional and national payers. The NSGC is positioned to realize its three strategic goals during the next 24 to 36 months and is already developing new strategic priorities for the next phase of growth.


The Bottom Line: Advocacy and Associations go Hand in Hand. Association leaders must be prepared to advocate for their members and promote the value of their profession—whatever it may be—to legislators and policymakers. Being directly tapped into the current trends, challenges and opportunities within your specific industry not only provides value to your members, it also allows you to proactively influence legislative and regulatory decisions, thus potentially helping reshape your entire industry.


Meghan Carey serves as the executive director of the Chicago-based National Society of Genetic Counselors. She can be reached by email at



Originally published in the February 2014 edition of Association News magazine. Reprinted with permission.