January 2020 President’s Letter: Update on ACMG-NSGC Discussions Around H.R. 3235

The year is off to an incredibly busy start on the advocacy front. H.R. 3235, the “Access to Genetic Counselor Services Act,” continues to gain awareness and support on Capitol Hill and across the healthcare landscape. A number of new co-sponsors were added late in 2019, bringing the current total up to 15, and we continue to recruit more from both sides of the aisle.  Please watch closely for NSGC Action Alerts; we will continue to send these out to prompt outreach at key moments in support of the bill. Continued communication with members of Congress is important–advocacy coming from us, our provider colleagues, and the patients we serve.   

We submitted our sign-on letter.  250 organizations signed on from across the landscape–national and regional provider organizations, large health systems, hospitals, laboratories, and many patient advocacy groups. This long list is one we should all feel incredibly proud to see; it is a reflection of the deep relationships and quality practices genetic counselors have built over the last 40 years.

On Tuesday, January 28, NSGC leadership met with ACMG to discuss their lack of support for the bill and the reservations they have about the bill as currently written. As ACMG leaders have shared in their written communications, they would like to see H.R. 3235 amended to put tighter controls on genetic counselor independence and scope of practice, and they feel that such an amendment would allow them to support the bill. 

Such policies are without strong precedent in the Social Security Act and are not customary in federal law. We feel strongly these are state-level issues and should be handled through state licensure laws. In the absence of evidence of harm when genetic counselors interpret genetic test results and deliver them to patients, we feel amending the bill is unnecessary and not in the best long-term interest of our profession or the people we serve. It would create bureaucratic barriers and complex policies that raise additional access issues at a time when we are dealing with great disparities in access to care.

We remain open and willing to explore how we can ensure we are building successful teams equipped to meet the needs of our patients with ACMG and other providers; there is no doubt they need us to do so. We feel there are existing state licensure laws to support this, future state licensure laws to be passed, and many new relationships to be built within the healthcare system. The most important thing NSGC members can do right now is to continue to raise awareness and support for H.R. 3235 among your colleagues and in your communities. Those voices matter.

Thank you for all you have done. Thank you for all you will continue to do. 

 

Sincerely,
Gillian Hooker
2020 NSGC President

This article was published in the January 2020 Advocate Newsletter.

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