Congress is currently considering the Access to Genetic Counselor Services Act (H.R. 6280/S. 3607), a bipartisan piece of legislation that would recognize genetic counselors as Medicare providers, allowing them to be reimbursed under Medicare Part B. Passing this Act will allow genetic counselor services to be reimbursed by insurance similarly to other health care professionals, like nurse practitioners and physician assistants. Without reimbursement, many hospital departments and practices cannot afford to hire genetic counselors, thus limiting access. Right now, genetic counselors are not recognized as Medicare providers, restricting Medicare beneficiaries’ access to genetic counselor services.
What is at stake for our community? Genetic counselors have a critical role in a rare disease patient’s health care team. They empower patients with knowledge to make important health care decisions, and help patients avoid unnecessary testing, reduce health care costs, and advance prevention against future disease.
The National Society of Genetic Counselors (NSGC) has united a coalition of over 450 academic medical centers, patient advocacy groups, and clinicians in support of this Act. This broad partnership reflects a shared recognition that genetic counselors are essential to managing complex health conditions; their expertise in genetics is vital to securing faster diagnoses and personalized treatment.
Anyone can be impacted by a genetic condition, and everyone deserves the expertise of a qualified counselor to help them make informed medical decisions. Keep reading to learn more about how this legislation could empower patients, and how you can take action to support the Access to Genetic Counselor Services Act.
Ashley’s Story
Ashley Castillo and her children live with a rare condition that requires expert genetic guidance. Her journey highlights the gaps in the health care system that often treat patients with a “one-size-fits-all” approach rather than the individualized care required for rare diseases. 
Ashley’s struggle began during her son’s infancy, when maternal health care, newborn screening, and genetic counseling services were limited. Her son appeared healthy to doctors, and Ashley’s parental concerns and family medical history were dismissed. This lack of proactive genetic assessment led to her son suffering a preventable health crisis at just 4 months old.
Seeking answers, Ashley turned to a Certified Genetic Counselor who guided the family through targeted genetic testing, finally providing an accurate diagnosis. Today, Ashley advocates for all patients and families navigating complex health conditions. She knows firsthand that genetic counseling is the key to proactive care. For Ashley’s family, genetic counselors helped identify opportunities for early intervention and individualized medicine.
“If there were greater emphasis on genetic risk factors, genetic testing, and counseling, I have no doubt in my mind my son’s lifelong, debilitating, complex health conditions could have been prevented,” Ashley says. “It is time to ensure that the 1 in 10 Americans living with a rare disease can reach the experts they need.”
Paige’s Story
Paige Williams, a Cincinnati resident and a former professional at a children’s hospital, was diagnosed with a rare LMNA gene variant that leads to both limb-girdle muscular dystrophy and cardiomyopathy. For Paige, this isn’t just a diagnosis; it’s a progressive battle that she has dealt with since 2023.
The specialized expertise of a genetic counselor was the turning point in Paige’s journey, helping her understand her genetic test results that explain her complex health issues. With an accurate understanding of her diagnosis thanks to a CGC, Paige was able to secure Medicaid resources that provided necessary support, including an electric wheelchair, home modifications, and a caretaker. Paige knows that many others are still struggling to find answers because of barriers to genetic expertise.
Despite being homebound and managing the physical toll of multiple procedures, Paige has found a powerful new purpose in advocacy. Now, she uses her background as a behavioral health therapist to fight legislative changes like the Access to Genetic Counselor Services Act.
“Medicare must recognize genetic counselors as providers to ensure seamless billing and testing,” Paige says. “Patients with cancer, cardiovascular, and neurological diseases will face delays in care, and their diseases will progress without this important change.” Paige’s personal journey motivates her to advocate for the entire rare disease community, championing access to the expert guidance that patients need to thrive.
Sofia’s Story
Driven by a passion to advocate for the rare disease community, Sofia Horan became a reproductive genetic counselor to bridge the gap between complex genetic information and patient care. As both a clinician and a NORD® Rare Action Network® (RAN) Ambassador, she has witnessed how the right information at the right time can alter a family’s trajectory. 
In her practice, Sofia sees how genetic testing connects rare disease families to early intervention, specialized medical teams, and critical support from the moment of birth. This early access is the key to minimizing the “diagnostic odyssey,” the years of uncertainty and misdiagnosis that many patients with complex health conditions endure before finding answers.
Sofia supports the Access to Genetic Counselor Services Act because she recognizes that patients rely on the specialized expertise of genetic counselors to interpret complex results and provide them with the information needed to make the best decision for their family. “I have seen firsthand how vital access to genetic counseling is for my patients,” Sofia says. “But without increased access to genetic counseling services, not all patients are able to benefit from genetic testing. That is why the Access to Genetic Counselor Services Act is so crucial.” Sofia shares her perspective to advocate for a health care system that better supports the relationship between specialists and the families navigating complex health conditions.
Take Action
On behalf of the more than 30 million Americans living with a rare disease, the National Organization for Rare Disorders (NORD®) is supporting the Access to Genetic Counselor Services Act (H.R. 6280/S. 3607). We need your help to ensure that the nearly 1 in 10 Americans affected by rare diseases can access the specialized experts they need. Please join us by taking action today:
- Contact Elected Officials: Click here to view NORD’s current action alert and tell your lawmaker to support the Access to Genetic Counselor Services Act. In just one minute, you can urge Congress to provide Medicare Part B coverage for genetic counselors, helping to eliminate long wait times and fragmented care. Your voice matters!
- Share Your Story: Does one of NORD’s policy priorities on the NORD® State Report Card® impact you? Share your personal story on how one or more of these issue areas has impacted you to get your story added to the “Patient Stories” bank on the NORD State Report Card landing page. To get started, email Jake Saltonstall, Community Engagement Manager at [email protected].
- Spread the Word: Share this post with your networks via social media or email. The need for expert guidance has never been greater. The louder we are, the better chance we have of ensuring Medicare beneficiaries with complex health conditions get the care they deserve.
