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Genetic counselors can help individuals understand their risk of cancer, make medical decisions based on relevant genetic findings, take steps to lower their cancer risk, and make informed decisions about the most effective course of treatment after a cancer diagnosis. But despite the importance of the services they provide, genetic counselors are not considered to be providers, and their services are not billable under Medicare.
By Matt Devino, MPH
Genetic counselors are healthcare professionals who have expert knowledge of how genetics contribute to the likelihood of developing disease; they help individuals understand how their unique genetic makeup may affect their health or the health of their family members. They use their knowledge to counsel patients about whether to get tested, and they help interpret test results.
By assisting with the delivery of precision medicine, genetic counselors can improve quality of care and help decrease overall healthcare costs. They help patients and their care teams determine which genetic tests are appropriate for individual patient needs, and when test results arrive, they interpret them to determine whether a patient is at an increased risk of developing a specific disease—such as cancer.
Genetic counselors can help individuals understand their risk of cancer, make medical decisions based on relevant genetic findings, take steps to lower their cancer risk, and make informed decisions about the most effective course of treatment after a cancer diagnosis. “Robust genetic counseling services will afford us the opportunity to start making the required changes to improve cancer care and outcomes in the Iowa cancer patient,” says Matthew Obinna Nwaneri, MD, MBA, medical director of the June E. Nylen Cancer Center in Sioux City, Iowa.
But despite their invaluable service, genetic counselors are not considered to be providers, and their services are not billable under Medicare. To address this issue, Rep. Brian Higgens (D-NY) introduced HR2144, the “Access to Genetic Counselor Services Act of 2021” on March 23, 2021. Since then, the bill has gained 30 cosponsors across both sides of the aisle. According to the bill’s language, it would “provide for expanded coverage of services furnished by genetic counselors under part B of the Medicare program.”
Genetic Testing in Iowa
Germline mutations are passed onto offspring from their parents and are associated with increased cancer risk. By understanding these mutations, genetic counselors can help patients adopt preventive measures to reduce their likelihood of developing cancer. In September 2021, the Iowa Institute of Public Health Research and Policy hosted a presentation on how to identify and implement genetic counseling services in a community cancer care setting as part of the Institute’s Rural Cancer Collaboratory Educational Series.
“There is a significant rise in cancer diagnoses linked to germline etiology (inherited or hereditary),” says Colleen A. Campbell, PhD, MS, LGC, director of genetic counseling operations at University of Iowa Hospitals & Clinics (UIHC). She adds that 10 percent of breast, prostate, colorectal, and pancreatic cancers and 20 percent of ovarian cancer may have germline links. In the recent ACCC podcast, “Genetic Counseling Advocacy,” Dr. Campbell describes specific policy changes that can promote access to genetic counseling across diverse patient groups, while also benefiting the hospitals and genetic counselors who provide these services.
In Iowa (and 28 other states), genetic counselors are required to be board-certified by the American Board of Genetic Counseling. They serve hospitals in multiple ways, including by ensuring the quality of genetic tests and the accuracy of results interpretation. The services of genetic counselors can help hospitals generate downstream revenue, decrease their liability, and support practice expansion. At UIHC, genetic counselors specialize in specific areas, including oncology and cardiology. Demand for their services is growing; the genetic counselor workforce in Iowa has increased during the past five years.
As part of its educational program to address the barriers to obtaining genetic testing and counseling in cancer programs and practices, the Iowa Oncology Society—a chapter member of ACCC—has created a consortium of multidisciplinary providers and stakeholders to discuss and address these issues. The Iowa Oncology Society hosted a series of three virtual Lunch & Learn presentations to spark conversations among local providers and stakeholders about barriers to genetic testing, counseling, and screening for patients with cancer and their family members. These presentations (now available on-demand) include:
Genetic counseling can impact actual diagnosis numbers by giving family members the opportunity to address their risk factors. Expanded genetic testing can lead to more effective, individualized cancer treatments.