Article| Volume 25, ISSUE 3, 100350, March 2023

Download started.


Access to clinically indicated genetic tests for pediatric patients with Medicaid: Evidence from outpatient genetics clinics in Texas

Published:November 29, 2022DOI:



      Little is known about how Medicaid coverage policies affect access to genetic tests for pediatric patients. Building upon and extending a previous analysis of prior authorization requests (PARs), we describe expected coverage of genetic tests submitted to Texas Medicaid and the PAR and diagnostic outcomes of those tests.


      We retrospectively reviewed genetic tests ordered at 3 pediatric outpatient genetics clinics in Texas. We compared Current Procedural Terminology (CPT) codes with the Texas Medicaid fee-for-service schedule (FFSS) to determine whether tests were expected to be covered by Medicaid. We assessed completion and diagnostic yield of commonly ordered tests.


      Among the 3388 total tests submitted to Texas Medicaid, 68.9% (n = 2336) used at least 1 CPT code that was not on the FFSS and 80.7% (n = 2735) received a favorable PAR outcome. Of the tests with a CPT code not on the FFSS, 60.0% (n = 1400) received a favorable PAR outcome and were completed and 20.5% (n = 287) were diagnostic. The diagnostic yield of all tests with a favorable PAR outcome that were completed was 18.7% (n = 380/2029).


      Most PARs submitted to Texas Medicaid used a CPT code for which reimbursement from Texas Medicaid was not guaranteed. The frequency with which clinically indicated genetic tests were not listed on the Texas Medicaid FFSS suggests misalignment between genetic testing needs and coverage policies. Our findings can inform updates to Medicaid policies to reduce coverage uncertainty and expand access to genetic tests with high diagnostic utility.


      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      ACMG Member Login

      Are you an ACMG Member? Sign in for online access.


      Subscribe to Genetics in Medicine
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Gutierrez A.M.
        • Robinson J.O.
        • Outram S.M.
        • et al.
        Examining access to care in clinical genomic research and medicine: experiences from the CSER Consortium.
        J Clin Transl Sci. 2021; 5: e193
        • Wojcik M.H.
        • Bresnahan M.
        • Del Rosario M.C.
        • Ojeda M.M.
        • Kritzer A.
        • Fraiman Y.S.
        Rare diseases, common barriers: disparities in pediatric clinical genetics outcomes.
        Pediatr Res. 2022;
        • Reuter C.M.
        • Kohler J.N.
        • Bonner D.
        • et al.
        Yield of whole exome sequencing in undiagnosed patients facing insurance coverage barriers to genetic testing.
        J Genet Couns. 2019; 28: 1107-1118
        • Bertier G.
        • Hétu M.
        • Joly Y.
        Unsolved challenges of clinical whole-exome sequencing: a systematic literature review of end-users’ views.
        BMC Med Genomics. 2016; 9: 52
        • Deverka P.A.
        • Dreyfus J.C.
        Clinical integration of next generation sequencing: coverage and reimbursement challenges.
        J Law Med Ethics. 2014; 42 (Suppl 1): 22-41
        • Latchaw M.
        • Ormond K.
        • Smith M.
        • Richardson J.
        • Wicklund C.
        Health insurance coverage of genetic services in Illinois.
        Genet Med. 2010; 12: 525-531
        • Graf M.D.
        • Needham D.F.
        • Teed N.
        • Brown T.
        Genetic testing insurance coverage trends: a review of publicly available policies from the largest US payers.
        Per Med. 2013; 10: 235-243
        • Spoonamore K.G.
        • Johnson N.M.
        Who pays? Coverage challenges for cardiovascular genetic testing in U.S. patients.
        Front Cardiovasc Med. 2016; 3: 14
        • Benoy M.E.
        • Iruretagoyena J.I.
        • Birkeland L.E.
        • Petty E.M.
        The impact of insurance on equitable access to non-invasive prenatal screening (NIPT): private insurance may not pay.
        J Community Genet. 2021; 12: 185-197
        • Wang G.
        • Beattie M.S.
        • Ponce N.A.
        • Phillips K.A.
        Eligibility criteria in private and public coverage policies for BRCA genetic testing and genetic counseling.
        Genet Med. 2011; 13: 1045-1050
        • Kutscher E.J.
        • Joshi S.M.
        • Patel A.D.
        • Hafeez B.
        • Grinspan Z.M.
        Barriers to genetic testing for pediatric Medicaid beneficiaries with epilepsy.
        Pediatr Neurol. 2017; 73: 28-35
        • Brown J.
        • O’Neill S.
        • DiNonno W.
        • Hess O.
        The impact of insurance coverage on the prenatal genetic counseling process: an exploration of genetic counselors’ experiences with TRICARE.
        Prenat Diagn. 2019; 39: 448-455
        • Amlie-Wolf L.
        • Baker L.
        • Hiddemen O.
        • et al.
        Novel genetic testing model: a collaboration between genetic counselors and nephrology.
        Am J Med Genet A. 2021; 185: 1142-1150
        • U.S. Centers for Medicare & Medicaid Services
        Medicare coverage database. Centers for Medicare & Medicaid Services.
        • Texas Health and Human Services Commission
        Managed care organization & dental maintenance organization provider services contact information. Updated 2022.
        • Texas Health and Human Services Commission
        Texas Medicaid and CHIP in Perspective. 11th edition. February 2017.
        • Texas Health and Human Services Commission
        Texas Medicaid and CHIP reference guide. Twelfth edition. December 2018.
      1. Texas Medicaid & Healthcare Partnership. Texas Medicaid provider procedures manual. Texas Medicaid & Healthcare Partnership. Updated November 30, 2022.
        • Texas Medicaid
        • Partnership Healthcare
        Online fee lookup search. Texas Medicaid & Healthcare Partnership.
        • Smith H.S.
        • Franciskovich R.
        • Lewis A.M.
        • et al.
        Outcomes of prior authorization requests for genetic testing in outpatient pediatric genetics clinics.
        Genet Med. 2021; 23 (Published correction appears in Genet Med. 2008;10(6):464): 950-955
        • Schaefer G.B.
        • Mendelsohn N.J.
        • Professional Practice and Guidelines Committee
        Clinical genetics evaluation in identifying the etiology of autism spectrum disorders.
        Genet Med. 2008; 10 (Published correction appears in Genet Med. 2008;10(6):464): 301-305
        • Volkmar F.
        • Siegel M.
        • Woodbury-Smith M.
        • et al.
        Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder.
        J Am Acad Child Adolesc Psychiatry. 2014; 53 (Published correction appears in J Am Acad Child Adolesc Psychiatry. 2014;53(8):931): 237-257
        • Miller D.T.
        • Adam M.P.
        • Aradhya S.
        • et al.
        Consensus statement: chromosomal microarray is a first-tier clinical diagnostic test for individuals with developmental disabilities or congenital anomalies.
        Am J Hum Genet. 2010; 86: 749-764
        • Borch L.A.
        • Parboosingh J.
        • Thomas M.A.
        • Veale P.
        Re-evaluating the first-tier status of fragile X testing in neurodevelopmental disorders.
        Genet Med. 2020; 22: 1036-1039
        • Weinstein V.
        • Tanpaiboon P.
        • Chapman K.A.
        • Ah Mew N.
        • Hofherr S.
        Do the data really support ordering fragile X testing as a first-tier test without clinical features?.
        Genet Med. 2017; 19: 1317-1322
        • Manning M.
        • Hudgins L.
        • Professional Practice and Guidelines Committee
        Array-based technology and recommendations for utilization in medical genetics practice for detection of chromosomal abnormalities.
        Genet Med. 2010; 12 (Published correction appears in Genet Med. 2020;22(12):2126): 742-745
        • Muhle R.A.
        • Reed H.E.
        • Vo L.C.
        • et al.
        Clinical diagnostic genetic testing for individuals with developmental disorders.
        J Am Acad Child Adolesc Psychiatry. 2017; 56: 910-913
        • Texas Medicaid & Healthcare Partnership
        Effective September 1, 2021, chromosomal microarray to become A benefit of Texas Medicaid. Texas Medicaid & Healthcare Partnership. Updated July 16, 2021.
        • Manickam K.
        • McClain M.R.
        • Demmer L.A.
        • et al.
        Exome and genome sequencing for pediatric patients with congenital anomalies or intellectual disability: an evidence-based clinical guideline of the American College of Medical Genetics and Genomics (ACMG).
        Genet Med. 2021; 23: 2029-2037
        • Yang Y.
        • Muzny D.M.
        • Reid J.G.
        • et al.
        Clinical whole-exome sequencing for the diagnosis of Mendelian disorders.
        N Engl J Med. 2013; 369: 1502-1511
        • Yang Y.
        • Muzny D.M.
        • Xia F.
        • et al.
        Molecular findings among patients referred for clinical whole-exome sequencing.
        JAMA. 2014; 312: 1870-1879
        • Lee H.
        • Deignan J.L.
        • Dorrani N.
        • et al.
        Clinical exome sequencing for genetic identification of rare Mendelian disorders.
        JAMA. 2014; 312: 1880-1887
        • Retterer K.
        • Juusola J.
        • Cho M.T.
        • et al.
        Clinical application of whole-exome sequencing across clinical indications.
        Genet Med. 2016; 18: 696-704
        • Dillon O.J.
        • Lunke S.
        • Stark Z.
        • et al.
        Exome sequencing has higher diagnostic yield compared to simulated disease-specific panels in children with suspected monogenic disorders.
        Eur J Hum Genet. 2018; 26: 644-651
        • Chambers J.D.
        • Saret C.J.
        • Anderson J.E.
        • Deverka P.A.
        • Douglas M.P.
        • Phillips K.A.
        Examining evidence IN U.S. payer coverage policies for multi-gene panels and sequencing tests.
        Int J Technol Assess Health Care. 2017; 33: 534-540
        • Douglas M.P.
        • Parker S.L.
        • Trosman J.R.
        • Slavotinek A.M.
        • Phillips K.A.
        Private payer coverage policies for exome sequencing (ES) in pediatric patients: trends over time and analysis of evidence cited.
        Genet Med. 2019; 21: 152-160
      2. United States Census Bureau. City and town population totals: 2010-2019. Updated February 16, 2022. Accessed April 5, 2022.