A Step Forward for Medicare Patients and Genetic Testing
Understanding Genetic Counseling
I was inspired to become a genetic counselor by my experience having a sister with a rare genetic disease. As a young child, I witnessed my parents struggle with the pain and confusion of navigating a rare diagnosis; they were never referred to see a genetic counselor who could have helped answer their questions and provide them with much needed support. At that time in the early 1980s, genetic counseling was still a relatively new field in healthcare and there weren’t that many practicing genetic counselors.
Fortunately, that’s not the case anymore. Genetic counselors see patients across the U.S. in many different settings (hospitals, telemedicine practices, labs, research studies) and in many different medical specialties (cancer, cardiovascular, rare disease, reproductive health – to name just a few). Through counseling and education, genetic counselors help individuals and families understand how their genetics may affect their health. Genetic counselors ask questions and take family histories to provide risk assessments, and they can facilitate genetic testing if appropriate. With more than 77,000 genetic tests on the market and researchers learning more and more about how our DNA affects our health every day, genetic counselors are a needed expert resource.
Does Medicare Cover Genetic Counseling?
But there’s a problem. Medicare beneficiaries (those who are 65 and older – 20 percent of the U.S. population) face many barriers in being able to benefit from genetic counseling services. This is because the Centers for Medicare and Medicaid Services (CMS) does not currently recognize genetic counselors as healthcare providers. This means that genetic counselors cannot be reimbursed for providing services to patients with Medicare insurance, and can only provide services to these patients under direct physician supervision. While many genetic counselors work to partner and collaborate with physicians regularly, having to meet with patients under direct physician supervision is a barrier to care because it results in longer wait times and restrictions in the use of telemedicine. For example, according to the 2022 National Society of Genetic Counselors Professional Status Survey, the most common wait time for a genetic counselor to see a patient with a physician was 3-4 months, while the most common wait time for a genetic counselor to see the patient alone was a mere 1-3 days.
For the nearly 63 million Medicare beneficiaries who face age-related conditions like cancer and heart disease in which genetic counseling and genetic testing are recommended, a delay in being able to cover genetic testing or to see a genetic counselor could mean a delay in diagnosis, preventive care or treatment. For example, consensus clinical guidelines recommend that all patients with ovarian cancer, pancreatic cancer, metastatic prostate cancer and metastatic breast cancer have genetic testing, as well as subsequent genetic counseling if a disease-causing variant is found. The genetic testing not only informs of other potential cancer risks as well as risks to family members, it also can help determine if certain therapies will be effective. Any delay in access to genetic counseling and genetic testing could delay needed treatment.
How the Access to Genetic Counselor Services Act Can Change Medicare Coverage
So what is the solution? Medicare policy reform is sorely needed to ensure that all patients can access appropriate genetic testing and genetic counselor services. During my term as the 2021 President for the National Society of Genetic Counselors, we introduced the “Access to Genetic Counselor Services Act” into both the House of Representatives and the Senate. The bill had strong bipartisan support with more than 75 House and Senate cosponsors, and the proposed legislation was even recommended by President Biden’s Cancer Panel as part of the Cancer Moonshot initiative! This year, the Access to Genetic Counselor Services Act was reintroduced into this 118th Congress, with a House bill (H.R. 3876) introduced in June and a companion Senate bill (S. 2323) introduced in July. This legislation would authorize genetic counselors to provide services under Medicare part B, enabling Medicare beneficiaries direct access to genetic counselor services.
Enacting this important legislation will help reduce disparities in care and enable genetic counselors to more equitably serve diverse populations as well as historically underserved communities.
Telemedicine: Expanding Access to Genetic Counseling
Genetic counselors are not equally distributed across the United States. A geospatial analysis of genetic counselors’ locations in relation to cancer incidence and social determinants of health found that one third of U.S. residents live more than a 30-minute drive from a genetic counselor, and that access to genetic counselors differs across geographical regions and by socioeconomic factors, such as income and insurance coverage. Telemedicine, such as the services provided by Genome Medical, permits people to have a genetic counseling consult from the comfort of their own home during a time that is convenient for them, rather than having to take time off work and/or drive a long distance. Telemedicine is therefore a key way to enable people who live in rural areas or who may not have the means to travel to an appointment to benefit from genetics services. Because the “Access to Genetic Counselor Services Act” would allow genetic counselors to provide services to Medicare beneficiaries independently as a covered benefit, it could enable more use of telemedicine and expand access in diverse communities.
The Potential Impact on Private Insurance
While I have focused primarily on Medicare beneficiaries, it is very likely that enacting this legislation would benefit people with private insurance as well. Medicare reimbursement of genetic tests and counselors would bring in more revenue for hospitals, health systems and private practices, enabling them to provide more genetic counselors to serve all of their patients and deliver these critical – and potentially life-saving – genetic services.
How You Can Support the Access to Genetic Counselor Services Act
Getting important legislation like the “Access to Genetic Counselor Services Act” passed is a big lift – even though the bill has strong bipartisan support, there are hundreds of bills introduced into Congress each year so getting any one issue prioritized can be a challenge. But here’s where you can help! With just one click, you can send a letter to your Representative here and your Senators here, requesting their co-sponsorship of the bill. It only takes a minute or two to send both letters, and your participation is impactful because the more letters members of Congress receive, the more likely they are to be aware of this critical issue and support it.
I look forward to the day when everyone, regardless of their age, geographical location, economic means or insurance, can access the services and expertise of a genetic counselor. You can learn more by reading about the Access to Genetic Counselor Services Act.
About the Author: Sara Riordan
Sara Riordan develops, plans and implements long-term, impactful strategies that advance the goals and growth of Genome Medical and furthers the adoption of the company’s genetic services and solutions.