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POLICY

Access to Genetic Counselor Services Act Organization Support Letter

Our organization supports enactment of the Access to Genetic Counselor Services Act to update Medicare law and improve access to genetic counselors for Medicare beneficiaries.  Genetic counselors are highly trained providers who support patients by providing comprehensive genetic counseling services.  Genetic counselors work as part of the medical team to facilitate communication between Medicare beneficiaries and other providers to manage health issues with a genetic component.

Genetic counselors have advanced training in medical genetics and counseling.  This specialized expertise enables genetic counselors to play a significant role in educating Medicare beneficiaries about the genetic contributions to disease and their health – both medical and psychological – and the health of family members. These highly trained professionals enable beneficiaries and other providers to consider which genetic tests may be appropriate, and how to evaluate test results. In short, genetic counselors empower patients and providers to make informed decisions.

The services of genetic counselors are increasingly important in the era of personalized medicine.  Genetic counseling is particularly helpful for Medicare beneficiaries considering genetic testing for certain conditions affecting the elderly that have a genetic component, such as cancer, cardiovascular disease and neurology. 

Medicare law needs to be updated to provide beneficiaries direct access to the services of genetic counselors to ensure patients receive the counseling they need to make the right decisions about their care.  While Medicare currently covers genetic counseling services, the lack of direct reimbursement for genetic counselors, and arcane “incident to” rules, significantly prevent referrals to these providers.

The Access to Genetic Counselor Services Act takes a measured approach to modernize Medicare to catch up with the innovation of genetics and genomic medicine. The bill would:

  • Improve the ability of other practitioners, such as physicians, to refer patients for genetic counseling to genetic counselors under Medicare Part B.
  • Provide reimbursement to genetic counselors at 85 percent of the physician fee schedule amount.
  • Ensure that other practitioners that currently provide the service can continue to do so if the activities are within their scope of practice.

Enabling broader Medicare beneficiary access to genetic counselors will help ensure appropriate genetic testing, provide critical knowledge to beneficiaries to fully understand test results that are often complex, and further integrate genetic counselors into the healthcare team.  We expect the legislation will enhance team-based care coordination for Medicare beneficiaries, and may also save money for beneficiaries and the Medicare program.

We urge you to support this legislation to modernize and update Medicare for patients.  For additional information, please contact John Richardson, Director of Government Relations, National Society of Genetic Counselors at jrichardson@nsgc.org or 202-367-1239.

Organizations can sign the letter by clicking HERE.

 

Access to Genetic Counselor Services Act Organization Support Letter Signatories

Signatories as of March 2024

  • Access to Expanded Carrier Screening Coalition

  • ACT Genetics
  • Advocate Aurora Health
  • Advocate Genetics
  • ALD Connect
  • Alexion, AstraZeneca Rare Disease
  • AliveAndKickn
  • Alliance of Dedicated Cancer Centers
  • Alliance for Patient Access
  • Allina Health
  • ALS Association
  • Ambry Genetics
  • American Board of Genetic Counseling
  • American Cancer Society
  • American Cancer Society Cancer Action Network
  • American Heart Association
  • American Kidney Fund
  • American Neurological Association
  • American Society for Reproductive Medicine
  • American Society of Colon and Rectal Surgeons
  • American Society of Human Genetics
  • Amyloidosis Foundation
  • Ann & Robert H. Lurie Children's Hospital of Chicago
  • Arizona Oncology Society
  • Artemis DNA
  • ARUP Laboratories
  • Association for Utah Genetic Counselors
  • Association of Community Cancer Centers
  • Association of Creatine Deficiencies
  • Atlantic Health System
  • Augustana University
  • Avellino
  • Avera Health
  • AXYS
  • Barth Syndrome Foundation
  • Bay Path University
  • Baylor College of Medicine
  • Baylor College of Medicine Genetic Counseling Program
  • Baystate Medical Center
  • Beth Israel Lahey Health
  • BillionToOne
  • Biora Therapeutics
  • Blueprint Genetics
  • Boise State University
  • Boise State University Master's in Genetic Counseling Program
  • Born a Hero Research Foundation
  • Boston Children's Hospital Department of Neurology
  • Boston University Master's Program in Genetic Counseling
  • Boston University School of Medicine
  • Brandeis University Master's in Genetic Counseling Program
  • BRCA Advanced 101 & 102 Journal Club
  • BRCAresponder
  • Bridge the Gap - SYNGAP Education and Research Foundation
  • Brigham and Women's Hospital
  • Bright Pink
  • Bryan Medical Center
  • C.R. Wood Cancer Center at Glen Falls Hospital
  • Cancer Advocacy Group of Louisiana
  • Cancer Partners of Nebraska
  • Cancer Support Community
  • Case Western Reserve University School of Medicine
  • CDH International
  • Cedars-Sinai
  • Centogene, US LLC
  • Charcot Marie Tooth Association
  • CHI Memorial Rees Skillern Cancer Institute
  • Child Neurology Foundation
  • Children's Hospital Colorado
  • Children's Hospital of Philadelphia
  • Children's Specialty Group
  • Children's Wisconsin
  • Choroideremia Research Foundation
  • City of Hope National Medical Center
  • Cleveland Clinic
  • Clinical Pharmacogenetics Implementation Consortium (CPIC)
  • Clover Genetics
  • The Collaborative Group of the Americas on Inherited Gastrointestinal Cancer (CGA-IGC)
  • Colon Cancer Coalition
  • Colon Cancer Foundation
  • Color
  • Colorado Cancer Coalition
  • Colorectal Cancer Alliance
  • Columbia University Irving Medical Center
  • COMBINEDBrain, Inc.
  • CommonSpirit Health
  • Community Hospital
  • Compass Oncology
  • Concert Genetics
  • Cooley Dickinson Health Care
  • Cooper Health System
  • Corewell Health System
  • Coriell Institute for Medical Research
  • Coriell Life Sciences
  • Csnk2a1 Foundation
  • Cure CMD
  • Cure Sanfilippo Foundation
  • CureDuchenne
  • Cystic Fibrosis Foundation
  • Dana-Farber Cancer Institute
  • Dartmouth-Hitchcock Health
  • DCM Foundation
  • Delaware Society of Clinical Oncology
  • Denali Oncology Group
  • Denver Health & Hospital Authority
  • Digestive Disease and Surgery Institute, Cleveland Clinic
  • Down Syndrome Association of Central Ohio
  • Down Syndrome Association of Greater Cincinnati
  • Down Syndrome Association of Northeast Ohio
  • Down Syndrome Association of the Valley
  • Dreamsickle Kids Foundation
  • Duke University
  • Dup15q Alliance
  • Eastern Wisconsin Division of the Hospital Sisters Health System
  • Emory School of Medicine
  • Emory University
  • Empire State Hematology & Oncology Society
  • Epilepsy Foundation
  • EveryLife Foundation for Rare Diseases
  • Exact Sciences
  • Exceptional Lives, Inc.
  • Executive Frameworks, Ltd (The Center for Business Models in Healthcare)
  • Family Connection of South Carolina
  • Family Heart Foundation
  • Fight Colorectal Cancer
  • Florida Association of Genetic Counselors
  • FOD Family Support Group
  • FORCE: Facing Our Risk of Cancer Empowered
  • Frederick Health
  • Friedreich's Ataxia Research Alliance
  • FSHD Society
  • Fulgent Genetics
  • Geisinger
  • GeneDx, Inc.
  • GeneMatters
  • Genentech
  • Genetic Alliance
  • Genetic Counseling Experience Initiative
  • Genetic Support Foundation
  • Genome Creative
  • Genome Medical
  • GenomeSmart Inc.
  • Genomic Medicine Institute, Cleveland Clinic
  • Genomind
  • George Washington University Medical Faculty Associates
  • GeriatRx
  • GI Cancers Alliance
  • Georgia Association of Genetic Counselors
  • Gibbs Cancer Center & Research Institute
  • Global Genes: Allies in Rare Disease
  • GO2 Foundation for Lung Cancer
  • Graduate School of Public Health, University of Pittsburgh
  • Greenwood Genetic Center
  • Grey Genetics
  • Gundersen Health System
  • Hawaii Pacific Health
  • Hawaii Society of Clinical Oncology
  • Hawkeye Area Down Syndrome Association (HADSA)
  • HCU Network America
  • HD Reach
  • HealthPartners
  • Health Wings Therapy
  • Heart Rhythm Society
  • Hearts For Ezra
  • Helix OpCo, LLC
  • Help 4 HD International
  • Hennepin Healthcare
  • Hereditary Diffuse Gastric Cancer Advocacy
  • Hereditary Neuropathy Foundation
  • Howard University Cancer Center
  • Hospital Sisters Health System Eeastern Wisconsin Division
  • Hospital Sisters Health System St. Vincent and St. Mary's Medical Center Hospitals
  • Human Genetics Association of New Jersey
  • Huntington's Disease Genetics
  • Huntington's Disease Society of America
  • Huntington's Disease Youth Organization (HDYO)
  • ICAN, International Cancer Advocacy Network
  • Idaho Society of Clinical Oncology
  • Illinois Society of Genetic Professionals
  • Illumina
  • Indiana Hemophilia and Thrombosis Center
  • Indiana Network of Genetic Counselors
  • Indiana Oncology Society 
  • Indiana State University
  • InformedDNA
  • InherRET, Inc.
  • Innovative Gx Laboratories
  • Intelliger Consulting
  • Intermountain Healthcare- Precision Genomics
  • International 22q11.2 Foundation
  • International Foundation for CDKL5 Research
  • International Network for Fatty Acid Oxidation Research and Management (INFORM)
  • International WAGR Syndrome Association
  • Invitae
  • Iowa Neurological Association
  • Iowa Oncology Society
  • Indiana University Health
  • Jacqueline Rush Foundation
  • Jewish Genetic Disease Consortium
  • Johns Hopkins University
  • Jordan's Guardian Angels
  • JScreen
  • Kaiona Counseling
  • Kansas Society of Clinical Oncology
  • Karmanos Cancer
  • KCNQ2 Cure Alliance
  • Keck Graduate Institute
  • Kennedy Krieger Institute
  • Kentucky Society of Clinical Oncology
  • Laboratory Corporation of America Holdings
  • LabSolutions
  • Le Bonheur Children's Hospital
  • Les Turner ALS Foundation
  • Lipodystrophy United
  • Loma Linda University Health
  • Long Island University
  • Long Island University Post
  • Long Island University Post Genetic Counseling Graduate Program
  • Louisiana Oncology Society
  • Lynch Syndrome International
  • Maine Chapter of the American College of Cardiology
  • Marshfield Clinic
  • Mary Greeley Medical Center
  • Maryland/D.C. Society of Clinical Oncology
  • Maryland and D.C. Society of Genetic Counselors
  • Maryland Oncology Hematology PA
  • Mass General Brigham
  • Massachusetts General Hospital
  • Massachusetts General Hospital Institute of Health Professions, Genetic Counseling Program
  • Massachusetts Society of Clinical Oncologists
  • M-CM Network
  • MedAnswers Inc.
  • Medical College of Wisconsin
  • Medical Oncology Association of Southern California
  • Medneon
  • Meharry Medical College
  • Memorial Care
  • Memorial Sloan Kettering Cancer Center
  • MercyOne Des Moines Medical Center
  • Mercy Health
  • Metis Genetics, LLC
  • Miami Valley Down Syndrome Association
  • Michael's Mission
  • Michigan Association of Genetic Counselors
  • Michigan Medicine
  • Michigan Society for Cardiovascular and Pulmonary Rehabilitation
  • Mickie's Miracles
  • Middlesex Health Cancer Center
  • Minnesota Cancer Alliance
  • Minnesota Genetic Counselors Association
  • Minnesota Oncology
  • Minnesota Society of Clinical Oncology
  • Mission Health Fullerton Genetics Center
  • Mississippi Metabolics Foundation
  • Missouri Cancer Associates
  • Missouri Oncology Society
  • Moffitt Cancer Center
  • Montana Oncology Society
  • Muscular Dystrophy Association
  • My Gene Counsel
  • My Gene Team
  • Myriad Genetics, Inc.
  • Natera
  • National Ataxia Foundation
  • National Comprehensive Cancer Network
  • National Down Syndrome Society
  • National Minority Quality Forum
  • National Organization for Rare Disorders
  • National PKU News
  • Nationwide Children's Hospital
  • Nebraska Hematology-Oncology, PC
  • Nevada Oncology Society
  • New England Cancer Specialists
  • New Engalnd Regional Genetics Group (NERGG, Inc.)
  • New Hope Fertility Center
  • New Mexico Society of Clinical Oncology
  • New York Oncology Hematology
  • New York State Genetics Task Force
  • NGLY1.org
  • No Stomach for Cancer
  • North Carolina Medical Genetics Association
  • North Carolina Oncology Association
  • North Memorial Health
  • Northern California Coalition of Genetic Counselors
  • Northern Nevada Genetic Counseling
  • Northern New England Clinical Oncology Society
  • NorthShore University Health System
  • Northwestern University
  • Norton & Elaine Sarnoff Center for Jewish Genetics (Jewish United Fund)
  • NothingPink
  • NW Rare Disease Coalition
  • Ochsner Health
  • Ohio Association of Genetic Counselors
  • Ohio Hematology Care, Inc. (OHC)
  • Ohio Hematology and Oncology Society
  • OhioHealth
  • Olaris, Inc.
  • Oncocyte
  • Oncology Society of New Jersey
  • Oregon Health & Science University
  • ORM Fertility
  • Osteogenesis Imperfecta Foundation
  • Ovarian Cancer Research Alliance
  • Pacific Reproductive Genetic Counseling
  • Parent Project Muscular Dystrophy (PPMD)
  • Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS)
  • Parkinson's Foundation
  • Partners HealthCare
  • Pathways for Rare and Orphan Studies
  • Penn Medicine Basser Center
  • Penn Neurogenetics Therapy Center
  • Penn State Health
  • Pennsylvania Association of Genetic Counselors
  • Pennsylvania Society of Oncology & Hematology
  • Perinatal Quality Foundation
  • Personalized Medicine Coalition
  • PharmGKB
  • Phelan-McDermid Syndrome Foundation
  • Pheo Para Alliance
  • Piedmont Healthcare, Inc.
  • PLUGS (Patient-centered Laboratory Utilization Guidance Services)
  • PlumCare, LLC
  • Prader-Willi Syndrome Association (USA)
  • PreventionGenetics
  • Prisma Health Upstate Cancer Institute
  • Progenity, Inc.
  • Providence St. Joseph Health
  • PTEN Hamartoma Tumor Syndrome Foundation
  • PXE International
  • Quest Diagnostics
  • Rady Children's Hospital- San Diego
  • Rare New England, Inc.
  • Rare-X
  • RASopathies Network
  • Raymond Foundation, Inc.
  • Regional Obstetrical Consultants
  • Remember The Girls
  • Rocky Mountain Cancer Centers
  • Rocky Mountain Oncology Society
  • Roswell Park Comprehensive Cancer Center
  • Rutgers Cancer Institute of New Jersey
  • Rutgers, the State University of New Jersey
  • Saint Francis Hospital Cancer Institute
  • Saint Louis University Department of Pediatrics
  • Saint Louis University School of Medicine
  • Sanford Health
  • Seattle Children's Hospital
  • Sema4
  • Sequence46, LLC
  • Sharsheret
  • Sickle Cell Disease Association of America, Inc.
  • Society for Maternal-Fetal Medicine
  • South Carolina Chapter of the American Academy of Pediatrics
  • South Carolina Oncology Society
  • Southeastern Regional Genetics Group (SERGG)
  • Southern California Genetic Counselors
  • Spectrum Health
  • St. Charles Healthcare
  • St. Luke's Health System
  • Stanford Health Care
  • Sudden Arrhythmia Death Syndromes (SADS) Foundation
  • Susan G. Komen
  • Sutter Health
  • Swedish Cancer Institute
  • Synapticure
  • SYNGAP1 Foundation
  • Tandem Genetics
  • Tennessee Genetic Counselor Association
  • Tennessee Oncology Practice Society
  • Texas Oncology
  • Texas Society of Clinical Oncology
  • Texas Society of Genetic Counselors
  • The Arizona Clinical Oncology Society (TACOS)
  • The Brooklyn Hospital Center
  • The CardioGenomic Testing Alliance
  • The Collaborative Group of the Americas on Inherited Gastrointestinal Cancers
  • The Ehlers-Danlos Society
  • The Familial Hypercholesterolemia Foundation
  • The John Ritter Foundation for Aortic Health
  • The Ohio State University Genetic Counseling Graduate Program
  • The Ohio State University James Cancer Hospital and Solove Institute
  • The Ohio State University Wexner Medical Center
  • The RUNX1 Research Program
  • The University of Arizona Cancer Center at Dignity Health St. Joseph's
  • The University of Pennsylvania Perelman School of Medicine Masters in Genetic Counseling Program
  • The Up Side of Downs of Northeast Ohio
  • The US Oncology Network
  • The US Oncology Network GREAT Program
  • The Women's Hospital
  • ThinkGenetic Foundation
  • Thomas Jefferson University Hospital
  • Thomas Jefferson University Hospital Comprehensive Parkinson's Disease and Movement Disorders Center
  • Thomas Jefferson University Hospital Stroke Division
  • Thomas Jefferson University Hospital Weinberg ALS Center
  • Tuberous Sclerosis Alliance
  • UC Davis Comprehensive Cancer Center
  • UCLA Health
  • United Leukodystrophy Foundation
  • Unified Patient Network
  • UnityPoint Health
  • University of Alabama at Birmingham Genetic Counseling Training Program
  • University of Arizona Genetic Counseling Graduate Program
  • University of Arkansas for Medical Science Genetic Counseling Graduate Program
  • University of California San Francisco
  • University of Colorado Anschutz Medical Campus
  • University of Iowa Health Care
  • University of Kansas Cancer Center
  • University of Kentucky Markey Cancer Center
  • University of Maryland Master's in Genetic Counseling Program
  • University of Maryland School of Medicine
  • University of Miami Miller School of Medicine
  • University of Michigan Genetic Counseling Program
  • University of Minnesota
  • University of Mississippi Medical Center
  • University of Mississippi Medical Center Pediatric Genetics Division
  • University of Nebraska Medical Center
  • University of North Carolina, Chapel Hill
  • University of Rochester Medical Center
  • University of South Florida
  • University of Utah Graduate Program in Genetic Counseling
  • University of Vermont Health Network
  • University of Washington Genetic Counseling Graduate Program
  • University of Wisconsin Hospitals and Clinics
  • US Oncology
  • USC Norris Comprehensive Cancer Center
  • UT Health | The University of Texas Health Center at Houston
  • University of Wisconsin Health
  • Vanderbilt University Medical Center
  • Variantyx
  • VHL Alliance
  • Virginia Association of Genetic Counselors (VaAGC)
  • Virginia Association of Hematologists & Oncologists
  • Virginia Cancer Specialists
  • Virginia Chapter of the American College of Cardiology
  • Virginia Hospital Center Health System
  • Virginia Oncology Associates
  • WakeMed Health & Hospitals
  • Watershed DNA, LLC
  • Wayne State University School of Medicine
  • Weill Cornell Medicine
  • Wentworth-Douglass Hospital
  • West Virginia Oncology Society
  • Whittingham Cancer Center
  • Wisconsin Association of Hematology and Oncology
  • Wisconsin Genetic Counselors Association
  • Woman's Hospital
  • Wyoming State Oncology Society

 

 

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