With each new Congressional session bills need to be re-introduced, and the lead bill sponsor generally is from the majority party. As a result, NSGC is having conversations with potential lead Republican bill sponsors from the Energy and Commerce and Ways and Means Committees who will introduce the Access to Genetic Counselor Services Act  in collaboration with our lead Democratic sponsor, Representative Higgins (D-NY). We will keep you updated with special announcements about the new lead bill sponsor and the new House and Senate bill numbers when the bill is reintroduced.

In preparation for reintroduction of the bill, the Advocacy Coordinating Committee has answered some frequently asked questions that we receive from the membership and other stakeholders.  If you have additional questions or would like to talk to a member of the ACC about the bill, please reach out to us at advocacy@nsgc.org.

NSGC Federal Advocacy Q&A

How are NSGC’s federal advocacy efforts structured?

A multidisciplinary team of volunteers, staff and contract lobbyists lead and carry out NSGC’s federal advocacy efforts.

Below is an organizational chart and descriptions of key groups within and outside of NSGC that all work together to advance NSGC’s Access to Genetic Counselor Services Act.

NSGC Board of Directors (BOD): The NSGC Board of Directors determines the strategic plan for the organization and makes decisions in line with NSGC’s Strategic Plan and Mission and Vision Statements.

NSGC Staff: NSGC contracts with an association management company named Smithbucklin. Smithbucklin employs our staff partners that support all NSGC activities, including our Government Relations team. The Government Relations team works closely with the Board of Directors, NSGC’s contract lobbying firm Capitol Counsel, and multiple NSGC committees including the Advocacy Coordinating Committee. They also lead state licensure efforts.

Capitol Counsel: Capitol Counsel is NSGC’s contract lobbying firm. NSGC contracts with Capitol Counsel to advise us on strategy and to expand NSGC’s footprint in Washington D.C. Capitol Counsel is a premier, bipartisan lobbying firm known for their work on healthcare issues. Capitol Counsel has experienced partners and staff who are highly regarded on Capitol Hill and who have experience and deep relationships with leaders on the Committees of Jurisdiction[1] for NSGC’s federal bill.  Members of the Capitol Counsel team working with NSGC include former staff directors and chiefs of staff of the House Energy and Commerce and Ways and Means Committees and a former Senate Finance Committee staffer.

SGC Advocacy Coordinating Committee (ACC): The 2021 NSGC BOD launched the Advocacy Coordinating Committee to coordinate local-level grassroots communications and advocacy for the federal bill. ACC members are NSGC volunteers who focus on building a network of genetic counselors, healthcare providers and organizations across the country to contact Members of Congress. Everything is done in collaboration with the NSGC Government Relations team and Capitol Counsel. ACC members have also engaged state and Congressional district leads (NSGC member volunteers), who have volunteered to help with grassroots efforts in their districts. These grassroots volunteers help work with individual genetic counselors, their employers and other patient and healthcare provider advocates to push the bill forward while also helping to control the costs of the effort required to support the bill.

Access to Genetic Counselor Services Coalition: The coalition is a group of over 400 employers, patient advocacy groups, professional societies and others have signed a letter of support for our legislation. A list of the supporting organizations can be found here. The coalition activities range from simply signing the letter of support, asking their members to send letters to Members of Congress, to meeting with Members of Congress to express their support for the Access to Genetic Counselor Services Act.

How long does it take for similar bills to be passed in Congress?

Advocacy requires extensive planning, preparation, and educating before active lobbying for a bill begins. Legislative action is a marathon – not a sprint. Also, there are many external factors that can affect how quickly or slowly a bill moves through the legislative process, these include public health crises and other major national and global events that shift the focus of lawmakers. Below are examples of the timeline for bills on similar topics, or in similar areas of interest:

● The Genetic Information Nondiscrimination Act (GINA) was first introduced in 1995 and passed in 2008, 13 years later.

● The PACT Act for Veterans took 12 years to pass in 2022 and is waiting to be signed by the President.

●  It took physician assistants (PAs) 43 years, from 1977 until 2020, to receive direct reimbursement from Medicare at 85% of the physician fee schedule (mentioned because this is exactly what passing the Access to Genetic Counselor Services Act will do).

[1] Members of Congress form Committees of Jurisdiction, which have jurisdiction over bills related to a specific subject. For example, all bills involving taxation go through the House Way and Means Committee.

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