On April 20, your Board of Directors gathered in Washington, DC, to advocate for the Access to Genetic Counselor Services Act as well as other policy priorities. The Board meets in person three times per year: once at our headquarters in Chicago at the beginning of the year in conjunction with our Leadership Summit, once in the late Spring in Washington, DC where we also go to the Hill to advocate for our profession, and once in the Fall in conjunction with our Annual Conference. This meeting in Washington also happened to fall during Volunteer Appreciation Week. I am always appreciative of all of our volunteers and especially appreciative of our Board members who take time away from work and family to support our profession and advocate for our members.
“Hill Day left me exhausted, inspired, and even more committed to fighting for equitable access to genetic counseling services for the patients and families who need them. Although I was mildly concerned that my Fitbit thinks I’m training for a marathon.”
— Kristen Shannon, At-Large Director, Board of Directors
“We had so many positive conversations with staffers who seemed to really grasp how important it is for genetic counselors to be recognized as providers of genetic counseling. A lot of things might seem out of our control right now, but one thing we can control is how we show up to advocate for things we believe in.”
— Lila Aiyar, At-Large Director, Board of Directors
“Nothing replaces the energy of being on the Hill to discuss genetic counselors, our work, and the critical Medicare recognition legislation that needs support. When I’m there, it reinforces my optimism that this will get done and fuels my fire to keep eyes on the prize.”
— Sara Pirzadeh-Miller, Immediate Past-President
“Meeting with lawmakers to discuss the Access to Genetic Counselor Services Act underscored the vital role of advocacy in bridging gaps in patient care. As a board member, it was an honor to represent our community in the push for legislation that supports informed choices for families.”
— Kenny Wong, At-Large Director
So how did it go, beyond the social media highlights?
First, be sure to read the summary from our government affairs team at Faegre Drinker in the Advocate each month. It is a lot of information, but it demonstrates just how much work is being done on the federal bill as well as many other policy priorities. This is a significant strategic investment by NSGC, funded by your membership dollars. I encourage every genetic counselor to be a member and every member to understand how those dollars contribute to advancing our profession.
This Hill Day resulted in commitments from new co-sponsors, renewed engagement from existing supporters, and important conversations with congressional offices that influence healthcare legislation. Without CMS recognition, many Medicare beneficiaries face unnecessary barriers to accessing genetic counseling services. Expanding access to genetic counselors is ultimately about ensuring patients can receive the genomic healthcare expertise they need.
An important part of our advocacy strategy involves engaging with the congressional committees with oversight and authority over whether healthcare legislation can move forward - committees of jurisdiction. In the House, the committees of jurisdiction for our bill are Ways & Means and Energy & Commerce. In the Senate, it is the Finance Committee. Bipartisan support within these committees is critical, as is engagement with both committee leadership and committee staff.
While leaders of the committees of jurisdiction are often unable to formally co-sponsor legislation because of their positions, they can significantly influence priorities and build support among other members. During Hill Day, we met with staff from leadership offices connected to these committees, particularly those focused on health policy. Their willingness to engage and express support is an important signal as we continue working to move our legislation forward.
Equally important are relationships with committee staff. Since partnering with Faegre Drinker, NSGC has been able to engage repeatedly with committee staff in ways that were previously difficult for our organization to access. During Hill Day, we again met with minority (Democratic) staff from Ways & Means. Two weeks later, I returned to Washington to meet with majority (Republican) staff from both Ways & Means and Energy & Commerce. Repeated face-to-face meetings help ensure our bill stays top of mind and position it for inclusion in future legislative vehicles such as an omnibus package or other broader healthcare efforts.
Another exciting aspect of this work is that advocacy for access to genetic counselors is not coming from NSGC alone. Organizations such as the American Kidney Fund, EveryLife Foundation for Rare Diseases, National Organization for Rare Disorders, and others have consistently included our legislation among their own advocacy priorities during their Hill Days and meetings with legislators.
On May 5, the Personalized Medicine Coalition, of which NSGC is a member, sponsored an educational briefing on Capitol Hill alongside the Personalized Medicine Caucus and invited me to represent NSGC. The briefing focused on personalized medicine and rare disease in children. Alongside panelists from Illumina, EveryLife Foundation for Rare Diseases, Pfizer, and Parent Project Muscular Dystrophy, I spoke about the urgency of improving access to genomic healthcare, including access to genetic counselor services. Lack of CMS recognition impacts the entire healthcare ecosystem.
These advocacy efforts are supported by NSGC Executive Staff, our Board of Directors, ongoing work from volunteers on the Advocacy Committee, and engaged members across the profession. As we continue to focus on specific members of Congress, you may receive requests to contact your Senator or Representative. Thank you in advance for saying yes.
Successful advocacy takes persistence, partnership, and sustained investment. It requires volunteers, engaged members, strategic relationships, and a strong professional organization coordinating those efforts over time. Thank you for being part of that work, whether by maintaining your membership, responding to advocacy alerts, or encouraging others to engage. Together, we are advancing our profession and expanding patient access to genetic counseling services.
Let’s go!!
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