Insurance denials and diagnostic rates in a pediatric genomic research cohort.

Creator(s)

Tricia N. Zion, Children's Mercy Kansas CityFollow
Courtney D. Berrios, Children's Mercy HospitalFollow
Ana S A Cohen, Children's Mercy HospitalFollow
Lauren E. Bartik, Children's Mercy HospitalFollow
Laura A. Cross, Children's Mercy HospitalFollow
Kendra Engleman, Children's Mercy HospitalFollow
Emily A. Fleming, Children's Mercy Kansas City
Randi N. Gadea, Children's Mercy Kansas CityFollow
Susan S. Hughes
Janda L. Jenkins, Children's Mercy HospitalFollow
Jennifer Kussmann
Caitlin E. Lawson, Children's Mercy HospitalFollow
Caitlin Schwager, Children's Mercy Kansas CityFollow
Meghan Strenk, Children's Mercy HospitalFollow
Holly Welsh, Children's Mercy HospitalFollow
Eric T. Rush, Children's Mercy HospitalFollow
Shivarajan Manickavasagam Amudhavalli, Children's Mercy HospitalFollow
Bonnie Sullivan, Children's Mercy HospitalFollow
Dihong Zhou, Children's Mercy HospitalFollow
Jennifer L. Gannon, Children's Mercy HospitalFollow
Bryce Heese, Children's Mercy HospitalFollow
Riley Moore, Children's Mercy Kansas CityFollow
Emelia Boillat, Children's Mercy Kansas CityFollow
Rebecca L. Biswell, Children's Mercy HospitalFollow
Daniel A. Louiselle, Children's Mercy HospitalFollow
Laura M B Puckett, Children's Mercy Kansas CityFollow
Shanna Beyer, Children's Mercy Kansas CityFollow
Shelby H H. Neal, Children's Mercy Kansas City
Victoria Sierant, Children's Mercy Kansas CityFollow
Macy McBeth, Children's Mercy Kansas CityFollow
Bradley Belden, Children's Mercy HospitalFollow
Adam Walter, Children's Mercy HospitalFollow
Margaret Gibson, Children's Mercy HospitalFollow
Warren A. Cheung, Children's Mercy HospitalFollow
Jeffrey J. Johnston, Children's Mercy HospitalFollow
Isabelle Thiffault, Children's Mercy HospitalFollow
Emily G. Farrow, Children's Mercy HospitalFollow
Elin Grundberg, Children's Mercy HospitalFollow
T Pastinen, Children's Mercy HospitalFollow

Document Type

Article

Publication Date

5-2023

Identifier

DOI: 10.1016/j.gim.2023.100020

Abstract

PURPOSE: This study aimed to assess the amount and types of clinical genetic testing denied by insurance and the rate of diagnostic and candidate genetic findings identified through research in patients who faced insurance denials.

METHODS: Analysis consisted of review of insurance denials in 801 patients enrolled in a pediatric genomic research repository with either no previous genetic testing or previous negative genetic testing result identified through cross-referencing with insurance prior-authorizations in patient medical records. Patients and denials were also categorized by type of insurance coverage. Diagnostic findings and candidate genetic findings in these groups were determined through review of our internal variant database and patient charts.

RESULTS: Of the 801 patients analyzed, 147 had insurance prior-authorization denials on record (18.3%). Exome sequencing and microarray were the most frequently denied genetic tests. Private insurance was significantly more likely to deny testing than public insurance (odds ratio = 2.03 [95% CI = 1.38-2.99] P = .0003). Of the 147 patients with insurance denials, 53.7% had at least 1 diagnostic or candidate finding and 10.9% specifically had a clinically diagnostic finding. Fifty percent of patients with clinically diagnostic results had immediate medical management changes (5.4% of all patients experiencing denials).

CONCLUSION: Many patients face a major barrier to genetic testing in the form of lack of insurance coverage. A number of these patients have clinically diagnostic findings with medical management implications that would not have been identified without access to research testing. These findings support re-evaluation of insurance carriers' coverage policies.

Journal Title

Genetics in medicine : official journal of the American College of Medical Genetics

Volume

25

Issue

5

First Page

100020

Last Page

100020

MeSH Keywords

Child; Humans; Insurance Coverage; Genomics

Keywords

Access to testing; Denials; Genomic medicine; Insurance; Research testing

Recommended Citation

Zion TN, Berrios CD, Cohen ASA, et al. Insurance denials and diagnostic rates in a pediatric genomic research cohort. Genet Med. 2023;25(5):100020. doi:10.1016/j.gim.2023.100020