#405 Why Insurance Denies Genetic Testing, and How to Navigate Coverage
Genetic testing can change the course of a patient’s care, but accessing the right test is not always straightforward. Behind the scenes, insurance coverage decisions, documentation requirements, prior authorization, denials, appeals, and cost concerns can all influence whether a patient receives timely answers. In this episode of DNA Today, we launch a new special series sponsored by Revvity in this episode exploring the health economics of genetic testing and the real-world systems that shape access to genomic medicine. Host Kira Dineen is joined by Dr. Madhuri Hegde, Senior Vice President and Chief Scientific Officer at Revvity, and Mackenzie Mosera Derby, a pediatric genetic counselor at UW Health. Together, they examine genetic testing access from both the diagnostic laboratory and clinical perspectives exploring why insurance coverage remains so inconsistent, what goes into a prior authorization, why genetic tests are commonly denied, and how clinicians can approach appeals and peer-to-peer reviews. In This Episode, We Discuss The transition from stacked laboratory procedure codes to codes for genes, panels, exomes, and genomes How and why insurance coverage varies among payers and individual health plans Coverage differences across hereditary cancer testing, exome sequencing, genome sequencing, reproductive testing, and population screening How rapid and ultra-rapid genome sequencing may be covered differently from standard genome sequencing The limited coverage available for preventive and population-based genomic testing The coordination required among patients, clinicians, laboratories, and insurance companies Why laboratories offering tests with similar names may differ in technology, interpretation, turnaround time, and clinical support What documentation is typically required for a genetic testing prior authorization How clinicians demonstrate medical necessity and clinical utility Why professional guidelines and peer-reviewed literature can strengthen an authorization request The role laboratories play in benefits investigations, billing assistance, financial support, and prior authorization Why laboratories may perform testing without knowing whether they will ultimately be reimbursed Common reasons insurance companies deny genetic testing Why “this test will not change clinical management” can be an overly narrow interpretation of genetic testing’s value How genetic results may inform surveillance, reproductive decisions, recurrence risks, family members, research eligibility, and patient support The role of hospital test utilization committees Why genetic counselors and geneticists should be represented on utilization review teams How letters of medical necessity (LOMN) and peer-to-peer reviews may support an appeal Why genetic counselors may be prevented from conducting peer-to-peer reviews, even when they were the ordering provider The time clinicians spend educating insurance representatives about genetics Why payer policies frequently lag behind genomic technology and professional recommendations The importance of detailed clinical documentation and accurate diagnostic coding The difference between prior authorization, insurance coverage, and guaranteed payment How self-pay pricing and misleading “no-cost” language can create confusion The potential devaluation of genetic testing and genetic counseling services through complementary or low cost self-pay options Why improving access requires collaboration among patients, clinicians, laboratories, professional organizations, healthcare systems, and payers About The Guests Madhuri Hegde, PhD, FACMG, is the Senior Vice President and Chief Scientific Officer at Revvity, where she leads the company’s scientific strategy and oversees Revvity Omics’ global network of laboratories. Dr. Hegde is a medical geneticist and an American Board of Medical Genetics and Genomics-certified diplomate in clinical molecular genetics. Her work focuses on advancing genomic technologies and expanding access to diagnostic testing for patients with rare and inherited conditions. Before joining industry, Dr. Hegde served as Executive Director of the Emory Genetics Laboratory and as a professor of human genetics and pediatrics at Emory University. She has previously joined DNA Today to discuss whole-genome sequencing, Duchenne muscular dystrophy, and rapid genome sequencing in the neonatal intensive care unit. Mackenzie Mosera Derby, MS, CGC, is a pediatric genetic counselor at UW Health and the University of Wisconsin–Madison Division of Genetics and Metabolism. Her work includes pediatric and inpatient genetics, genetic testing utilization, clinical education, and improving the systems through which patients access genetic services. Mackenzie also teaches genetic counseling students and brings experience examining how documentation, insurance authorization, utilization review, and multidisciplinary collaboration affect patient care. Resources American College of Medical Genetics (ACMG) Evidence-Based Clinical Practice Guidelines (EBGs) National Society of Genetic Counselors (NSGC) Billing and Reimbursement Resources (including CPT codes) American Medical Association (AMA) creation of Current Procedural Terminology (CPT®) codes Centers for Medicare & Medicaid Services (CMS), which is the U.S. federal agency that provides health coverage to more than 160 million through Medicare, Medicaid, the Children's Health Insurance Program, and the Health Insurance Marketplace. Health literacy paper referenced by Mackenzie sharing that only 12% of U.S. adults had “proficient” health literacy. Data was collected in 2003 and the paper was published in 2006. Revvity website Related DNA Today Episodes #394 How Newborn Sequencing Could Transform Pediatric Rare Disease Care in Florida Dr. Pradeep Bhide and Florida State Representative Adam Anderson discuss the Sunshine Genetics Act and a voluntary newborn genome-sequencing pilot program. The episode examines how earlier genomic testing could shorten the diagnostic odyssey and expand access to rare disease diagnoses for children and families. #298 Genetic Counselors’ Role in Insurance with Stephanie Gandomi Genetic counselor Stephanie Gandomi shares her experience working within health insurance and explores prior authorization, payer medical policies, laboratory market access, and the role genetic counselors can play in coverage decisions. #226 NICU Whole-Genome Sequencing with Hong Li and Madhuri Hegde Dr. Hong Li and Dr. Madhuri Hegde discuss the use of rapid whole-genome sequencing for critically ill newborns, including how faster diagnoses may affect treatment, medical management, and healthcare utilization. #202 Duchenne Muscular Dystrophy with Ann Martin and Madhuri Hegde Genetic counselor Ann Martin and Dr. Madhuri Hegde explore the genetics of Duchenne muscular dystrophy, available genetic testing options, and emerging treatments. #177 Whole-Genome Sequencing with PerkinElmer Genomics (aka Revvity) Dr. Madhuri Hegde explains whole-genome sequencing, how it compares with other genetic testing approaches, and its growing role in diagnosing rare and inherited disorders. #180 Reproductive DNA Testing with Mitera This episode explores reproductive genetic testing, including insurance billing, prior authorization, self-pay options, and the financial considerations patients may encounter when pursuing testing. Connect with DNA Today You never have to wait long for a new episode of DNA Today, we release episodes every Friday! In the meantime, explore our library of over 400 episodes on Apple Podcasts, Spotify, DNAToday.com, or wherever you listen to podcasts. Just search “DNA Today.” Prefer to watch? The video version of this episode is available on our YouTube channel and DNAToday.com. Select episodes are filmed in person, including some at the iconic NBCUniversal studios. Discover more podcasts exploring genetics, genomics, medicine, and science from our network, Gene Pool Media: The Science Podcast Network. DNA Today is hosted and executive produced by Kira Dineen, MS, LCGC, CG(ASCP)CM. Liv Davidson is our Social Media Lead and Eric Knaus is our Digital Marketing and Automation Lead. Follow us at @DNATodayPodcast on all platforms including Instagram, X, BluSky, Threads, LinkedIn, Facebook, YouTube and our website, DNAToday.com. 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