Progress gives me energy. One thing I was looking forward to as I came into this year was knowing NSGC is kicking off the implementation of our new Strategic Plan. While we know uncertainty around the federal environment remains, and times are far from perfect, NSGC continues to focus on how we can make good progress happen.  

As a reminder of our Plan at a high level:

• Goal 1 - Medicare recognition/competitive reimbursement (Get GCs paid!)
• Goal 2 - Amplifying genetic counselor influence (Get GCs a seat at the table!)
• Goal 3 - Modernizing NSGC for the future. 

In just the first quarter of the year, I can happily report that excellent work is being done towards our goals. Now, to highlight some examples! 

Getting GCs paid could not be more important to the sustainability of our profession, and we feel that more acutely now in this chaotic federal environment. Towards this goal, we kicked off a total of five workstreams with our partners at Faegre Drinker consulting. While our federal advocacy/government relations workstream started together last October, four more started on January 1: payer education/outreach, state licensure, federal advocacy, payer education/outreach (private and state Medicaid), and regulatory work which is the thread through all workflows. 

There are many layers to the payer work. 

• As part of the payer piece, CPT code 96041 was launched through the hard work of our CPT advisor and ASD committee support. The ASD launched the CPT discussion forum in March to better allow members to ask questions of our experts and support each other during the transition. 
• NSGC has been in contact with every national payer serving over 10 million people. As of last review in March, NSGC was aware of over 22 payers having updated coverage policies to include 96041. The great news is that the majority of payers contacted have indicated intention to cover 96041, and many mid-sized and smaller payers have adopted it into coverage policies. We are having ongoing conversations with payers without 96041 coverage policy to explore coverage options and help them craft policy. 
• Our Faegre payer team has conducted a landscape assessment, and NSGC leadership is working with them to analyze the data and finalize a priority payer outreach list. In Q2, outreach to those payers has started, including sharing draft policy language from NSGC to show our position and advocacy for optimal reimbursement. 
• Simultaneously, a state Medicaid landscape assessment and outreach effort is underway. Ten states were selected after the landscape assessment, and NSGC is working with Faegre to push the outreach efforts forward with fantastic volunteers helping on the ground. 
• While there are still challenges in coverage and ongoing updates to the CPT code for some payers since some regional payers plan to update the code during a scheduled review cycle later in the year, this is promising progress. 

On the federal effort front, the Faegre team has been working to secure a new Senate co-lead and making progress on updating bill language in anticipation of bill reintroduction in the coming weeks. We have also been writing introductory letters to the new administration leaders, such as the new Secretary for Health and Human Services (HHS, Robert F. Kennedy, Jr) and Centers for Medicare (Dr. Mehmet Oz) to push for federal bill support. NSGC has been supporting advocacy on numerous issues on the federal level that are important to our genetic counseling community through letter campaigns. Examples of this include supporting NIH appropriations, Reducing Hereditary Cancers Act, opposing the decimation of Advisory Committee on Heritable Disorders in Newborns, opposition to HHS budget cuts, and more. 

One element under our amplifying GC influence includes more focus on global genetic counseling relationships and NSGC as a partner in this important community. In February, I attended the World Congress of Genetic Counseling (WCGC) meeting in England to represent NSGC for the first time at this annual conference that brings together GCs from all over the world for education, excellent research presentations and networking. I was able to talk to many GCs about their experiences and how NSGC could be a better resource to our international colleagues. I also attended the Transnational Alliance of Genetic Counseling (TAGC) meeting, which is an excellent organization of GCs interested in education around the world. I am excited to say that I appointed Dr. Colleen Campbell, our immediate past president, to be the NSGC representative on the working group that is analyzing potential models for an international genetic counseling organization. Much more to come here! 

Additionally, we have been working on increasing our opportunities for seats at important tables. We are initiating a relationship with the Institute of Gene Therapies (IGT) which is a multi-institutional advocacy organization for the gene therapies space where GC presence and influence should and will continue to be impactful.  We are refreshing and adding to our organizational liaison list, and reaching new partners like the American Heart Association, and other healthcare provider organizations and technology influencers. 

Last, but not least, progress towards modernizing NSGC has made great strides. The Board is reassessing the NSGC mission and vision statements to ensure they reflect the current and future state of our organization, as well as cultivating a new values framework to encompass our organization’s values as a complement to our mission and vision that helps give true continuity to the Board’s decision-making. Our staff partners have finalized our transition to HubSpot for updating and streamlining NSGC communications to membership, and we will be launching an updated NSGCommunities platform in the coming months to provide a modernized interface and enhanced user experience! The Board also approved the change to Genetic Counselor Appreciation Day, as discussed in my February article. NSGC branded materials for the new title to our annual November celebration are coming in a few weeks.  

I can’t believe this has all happened in just one quarter of the year. We don’t know for certain what tomorrow, next week or three months from now will bring, but what I can say with 100% certainty is our progress will continue toward our goals. Strength, courage and conviction from our volunteers, staff and leaders will take us to where we want to be. Stay the course!  

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