CurrentUnitedHealthcarePolicy CS165KS.05

Genetic Testing for Neurological Disorders (for Kansas Only)

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Coverage of genetic testing for neurological disorders under the UnitedHealthcare Community Plan Medical Policy for Kansas, including targeted panels of five or more genes and comprehensive multigene panels.

Policy Summary

PayerUnitedHealthcare

PolicyGenetic Testing for Neurological Disorders (for Kansas Only)

Policy CodePolicy CS165KS.05

Change TypeNo material clinical or coverage changes

Effective DateOctober 1, 2026

Next Review DateN/A

Key ActionEnsure the medical record includes relevant medical history, physical examination findings, and pertinent diagnostic test results supporting medical necessity.

SourceLink

POLICY UPDATE CHANGES

No material clinical or coverage changes in this revision.

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CurrentUnitedHealthcarePolicy CS165KS.05

Genetic Testing for Neurological Disorders (for Kansas Only)

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Policy Summary

PayerUnitedHealthcare

PolicyGenetic Testing for Neurological Disorders (for Kansas Only)

Policy CodePolicy CS165KS.05

Change TypeNo material clinical or coverage changes

Effective DateOctober 1, 2026

Next Review DateN/A

Key ActionEnsure the medical record includes relevant medical history, physical examination findings, and pertinent diagnostic test results supporting medical necessity.

SourceLink

POLICY UPDATE CHANGES

No material clinical or coverage changes in this revision.

KansasState-specific application

5+ genesMinimum targeted panel size

4Neurological disorders with specified criteria

Not medically necessaryComprehensive multigene panel coverage

4Reference procedure codes

Coverage Criteria

Kansas State-Specific Criteria

For Kansas-specific medical necessity criteria for gene analysis (genetic testing), refer to the Kansas Medical Assistance Program Professional Fee-for-Service Provider Manual.

Apply the Kansas Medical Assistance Program: Professional Fee-for-Service Provider Manual criteria when determining coverage for gene analysis.

Targeted Panel Testing

Targeted panel testing of five or more genes for neurological disorders is proven and medically necessary when all of the following are met.

ALL of the following

The individual has signs or symptoms of a heritable neurological disorder, and the results are expected to directly impact medical management of that disorder.
The test is ordered by, or performed in consultation with, a medical geneticist, developmental pediatrician, or adult or pediatric neuromuscular or neurogenetics specialist.
The test is intended to establish a genetic cause for one of the following
- Congenital myopathy or metabolic myopathy
- Ataxia
- Peripheral neuropathy
- Hereditary spastic paraplegia
- Muscular dystrophy

Comprehensive Neurological Disorder Panels

Comprehensive panel testing is not medically necessary when it evaluates multiple genes associated with multiple categories of clinically distinct neurological disorders.

Comprehensive panels that evaluate multiple genes associated with multiple clinically distinct neurological disorder categories are unproven and not medically necessary because evidence is insufficient to establish efficacy.

Congenital Muscular Dystrophy

Genetic testing in the evaluation and diagnosis of congenital muscular dystrophy may be considered in consultation with a pediatric neuromuscular specialist and based on the clinical presentation.

Genetic evaluation may include one or more of the following approaches

Consultation with a pediatric neuromuscular specialist for diagnosis and management.
Targeted genetic testing for a specific congenital muscular dystrophy subtype with a well-characterized molecular cause, when available and feasible.
Whole-exome or whole-genome sequencing when a mutation is not identified in a commonly associated gene or when the phenotype has genetic origins that are not well characterized, as these technologies become accessible and affordable for routine clinical use.

Limb-Girdle and Distal Muscular Dystrophy

Genetic diagnosis of suspected limb-girdle or distal muscular dystrophy should be guided by the clinical phenotype, inheritance pattern, associated manifestations, electrodiagnostic findings, and biopsy findings. The following phenotype-driven targeted testing strategies are supported by the AAN/AANEM guidelines.

Use targeted testing when the clinical presentation supports one of the following patterns

Probable autosomal dominant inheritance pattern
- Limb-girdle weakness and suspected muscular dystrophy with cardiomyopathy, respiratory involvement, electromyography showing myotonic or pseudomyotonic discharges, ankle dorsiflexor weakness, or muscle biopsy features of myofibrillar myopathy.
- Test for mutations in CRYAB, DES, DNAJB6, FLNC, MYOT, TTN, or ZASP.
Probable autosomal recessive inheritance with mental retardation
- Limb-girdle weakness and suspected muscular dystrophy with probable autosomal recessive inheritance and mental retardation.

Additional Testing After a Nondiagnostic Muscular Dystrophy Workup

Additional testing may be considered when the initial muscular dystrophy evaluation is nondiagnostic.

ALL of the following

Initial genetic testing, muscle biopsy, and a dried blood spot test for Pompe disease do not provide a diagnosis.
Additional evaluation may include
- Genetic consultation
- Parallel sequencing of targeted exomes
- Whole-exome sequencing
- Whole-genome screening

Hereditary Neuropathy and Distal Symmetric Polyneuropathy

Genetic testing should be guided by the clinical phenotype, inheritance pattern, and electrodiagnostic features when evaluating hereditary neuropathy or distal symmetric polyneuropathy.

Applicable clinical circumstances

Conduct genetic testing for accurate diagnosis and classification of hereditary neuropathies.
Consider genetic testing in cryptogenic polyneuropathy when the patient has a hereditary neuropathy phenotype.
For initial testing, focus on the most common abnormalities, including CMT1A duplication or deletion and mutations in GJB1 or MFN2.
Routine genetic testing may be considered insufficiently supported when cryptogenic polyneuropathy is present without a hereditary neuropathy phenotype; evidence is insufficient to support or refute its usefulness.

When medical necessity cannot be determined using the applicable InterQual Molecular Diagnostics criteria, targeted panel testing may be evaluated under the policy’s criteria for heritable neurological disorders. The InterQual criteria address Charcot-Marie-Tooth hereditary neuropathy, Duchenne/Becker muscular dystrophy, glycogen storage disease type I, and Niemann-Pick disease types A and B (acid sphingomyelinase deficiency).

Evidence for next-generation sequencing in hereditary ataxia suggests substantial diagnostic yield, particularly in cohorts enriched for autosomal recessive inheritance, positive family history, or consanguinity. However, interpretation is limited by substantial heterogeneity in cohort selection, prior workup, phenotype definitions, and testing strategies; observational, nonrandomized study designs; incomplete statistical reporting; selection bias; limited geographic and ancestry representation; inconsistent reporting of prior testing and attrition; and the inability of next-generation sequencing to detect repeat expansions, which are a common cause of hereditary ataxia.

Evidence is also insufficient to support or refute routine genetic testing for cryptogenic polyneuropathy when a hereditary neuropathy phenotype is absent.

Comprehensive panels evaluate genes unrelated to the individual’s phenotype and lack sufficient supporting evidence of clinical utility. Current evidence indicates that phenotype generally correlates with variants in genes already known to be associated with the clinical presentation, supporting targeted testing for accurate diagnosis and informed clinical decision-making rather than broad testing across multiple clinically distinct neurological disorder categories.

Whole-exome and whole-genome sequencing are addressed separately under the UnitedHealthcare policy titled Whole Exome and Whole Genome Sequencing (Non-Oncology Conditions) (for Kansas Only).

Covered Indications

Heritable Neurological Disorder With Management Impact

Targeted panel testing of five or more genes may be covered when all of the following conditions are met:

Covered targeted-panel indication

Listed neurological disorder: The suspected disorder is congenital myopathy or metabolic myopathy, ataxia, peripheral neuropathy, hereditary spastic paraplegia, or muscular dystrophy.
Qualified ordering or consultation: The test is ordered by or performed in consultation with a medical geneticist, developmental pediatrician, or adult or pediatric neuromuscular or neurogenetics specialist.

Specified Neurological and Neuromuscular Disorders

Apply the applicable InterQual CP: Molecular Diagnostics criteria for any of the following specified conditions:

InterQual-referenced condition

Eligibility Requirements

A positive family history or consanguinity may increase diagnostic yield in hereditary ataxia cohorts, particularly in cohorts enriched for autosomal recessive inheritance. However, the policy does not impose a specific family-history or consanguinity requirement for evaluation.

For unresolved suspected muscular dystrophy, the initial evaluation includes genetic testing, a muscle biopsy, and a dried blood spot test for Pompe disease. If these evaluations do not establish a diagnosis, further evaluation may include genetic consultation or broader molecular testing such as targeted-exome sequencing, whole-exome sequencing, whole-genome screening, or NGS. Children with suspected congenital muscular dystrophy should also be evaluated in consultation with a pediatric neuromuscular specialist.

Applicable Codes

Applicable reference codesCPT

0216U	Neurology (inherited ataxias), genomic DNA sequence analysis of 12 common genes including small sequence changes, deletions, duplications, short tandem repeat gene expansions, and variants in non-uniquely mappable regions, blood or saliva, identification and categorization of genetic variants.
0217U	Neurology (inherited ataxias), genomic DNA sequence analysis of 51 genes including small sequence changes, deletions, duplications, short tandem repeat gene expansions, and variants in non-uniquely mappable regions, blood or saliva, identification and categorization of genetic variants.
81448	Hereditary peripheral neuropathies (e.g., Charcot-Marie-Tooth, spastic paraplegia), genomic sequence analysis panel, must include sequencing of at least 5 peripheral neuropathy-related genes (e.g., BSCL2, GJB1, MFN2, MPZ, REEP1, SPAST, SPG11, SPTLC1).
81479	Unlisted molecular pathology procedure

Provider Actions and Documentation

Documentation Required

Medical Necessity Records Required

The patient’s medical record must fully support the medical necessity of the requested genetic testing. Records must be legible, maintained in the medical record, and available upon request; documentation supports clinical-criteria review but does not guarantee coverage.

Include the relevant medical history.
Include findings from the physical examination.
Include results of pertinent diagnostic tests or procedures.

Denial Risk

Comprehensive Multigene Panels Not Covered

Comprehensive multigene panels intended to evaluate multiple genes across multiple clinically distinct neurological-disorder categories are considered unproven and not medically necessary because of insufficient evidence of efficacy. For whole-exome or whole-genome sequencing, refer to the applicable UnitedHealthcare policy for Kansas.

Not Covered or Insufficiently Supported

Comprehensive panels that evaluate multiple genes across multiple categories of clinically distinct neurological disorders are not medically necessary. The policy supports phenotype-directed testing because the individual’s clinical presentation typically correlates with variants in genes already associated with that presentation; genes unrelated to the phenotype lack sufficient evidence of clinical utility.

Routine genetic testing is not supported for cryptogenic polyneuropathy without a hereditary neuropathy phenotype. Genetic testing is recommended for accurate diagnosis and classification when hereditary neuropathy is suspected, and may be considered in cryptogenic polyneuropathy when a hereditary neuropathy phenotype is present.

For cryptogenic polyneuropathy without a hereditary neuropathy phenotype, the evidence is rated Level U, meaning there is insufficient evidence to support or refute the usefulness of routine genetic testing. Initial testing should instead be guided by the clinical phenotype, inheritance pattern, and electrodiagnostic features when a hereditary neuropathy phenotype is present.

Routine genetic testing for cryptogenic polyneuropathy in the absence of a hereditary neuropathy phenotype is an unsupported testing scenario because available evidence is insufficient to establish clinical usefulness. Testing may be considered when the clinical presentation has features of hereditary neuropathy.

Background

Genetic testing for neurological disorders may support diagnosis, prognosis, risk assessment, and selection of appropriate clinical interventions. The policy addresses heritable disorders affecting the neuromuscular system, brain, spinal cord, and peripheral nerves, including ataxia, peripheral neuropathy, hereditary spastic paraplegia, congenital or metabolic myopathy, and muscular dystrophy. Testing strategy should be guided by the clinical phenotype, inheritance pattern, and relevant diagnostic findings, with targeted testing favored when the suspected disorder and associated genes are clinically defined.

Definitions

Ataxia

DefinitionA condition of the nervous system that causes loss of control of muscle movement and coordination. Ataxia can be a symptom of another condition or can happen on its own.

Comprehensive Panel

DefinitionAn assay that simultaneously tests more than one gene associated with a variety of conditions, symptoms, or nonoverlapping clinical presentations.

Congenital Myopathy

DefinitionAn abnormality affecting muscle development, typically manifesting at birth or during early infancy. The clinical presentation may include muscle weakness, hypotonia, and respiratory distress.

Policy Summary

PayerUnitedHealthcare

PolicyGenetic Testing for Neurological Disorders (for Kansas Only)

Policy CodePolicy CS165KS.05

Change TypeNo material clinical or coverage changes

Effective DateOctober 1, 2026

Next Review DateN/A

Key ActionEnsure the medical record includes relevant medical history, physical examination findings, and pertinent diagnostic test results supporting medical necessity.

SourceLink

On This Page

Screen for mutations causing primary or secondary alpha-dystroglycan deficiency, including DAG1, FKTN, POMGNT1, POMT1, or POMT2.

Proximal and distal weakness

Use specific clinical features, such as rippling muscles, cardiomyopathy, or atrophy of specific muscle groups, together with electromyography and biopsy features, such as irritability, myofibrillar myopathy, reduced emerin immunostaining, or rimmed vacuoles, to guide testing.
Testing may include ANO5, BAG3, CAV3, CRYAB, DES, DNAJB6, DYSF, EMD, FLNC, LMNA, MYOT, TTN, or ZASP.

Next-generation sequencing to identify the genetic abnormality

Charcot-Marie-Tooth hereditary neuropathy: The condition under evaluation is Charcot-Marie-Tooth hereditary neuropathy.
Duchenne-Becker muscular dystrophy: The condition under evaluation is Duchenne-Becker muscular dystrophy.
Glycogen storage disease type I: The condition under evaluation is glycogen storage disease type I.
Niemann-Pick disease types A or B: The condition under evaluation is Niemann-Pick disease type A or B (acid sphingomyelinase deficiency).

Suspected or Established Hereditary Neurological or Neuromuscular Disease

Phenotype- and inheritance-guided molecular testing may be considered for suspected or established hereditary neurological or neuromuscular disease, including:

Qualifying hereditary disease

Congenital muscular dystrophy: The patient has suspected or established congenital muscular dystrophy and evaluation follows pediatric neuromuscular specialist and phenotype-directed testing recommendations.
Muscular dystrophy: The patient has suspected or established muscular dystrophy and testing is guided by the clinical phenotype, inheritance pattern, associated manifestations, electrodiagnostic findings, or biopsy findings.
Hereditary neuropathy: The patient has suspected or established hereditary neuropathy and genetic testing is used for accurate diagnosis and classification.
Cryptogenic polyneuropathy with hereditary phenotype: The patient has cryptogenic polyneuropathy with a hereditary neuropathy phenotype.
Genetic testing may be considered; routine testing without a hereditary phenotype is not supported by sufficient evidence.

Diagnostic-Yield Evidence for Molecular Testing

Molecular testing may be evaluated for hereditary ataxia, neuromuscular disease, or peripheral neuropathy when the method is appropriate to the clinical presentation. Reported diagnostic yield varies by phenotype and cohort:

Applicable molecular evaluation

Hereditary ataxia: Evaluate hereditary ataxia using targeted next-generation sequencing, multigene-panel testing, whole-exome sequencing, whole-genome sequencing, or a related molecular method.
A systematic review reported a median diagnostic yield of 43% across studies; repeat-expansion testing may be necessary because NGS cannot detect repeat expansions.
Neuromuscular disease: Evaluate suspected neuromuscular disease using multigene-panel testing or a related molecular method.
A neuromuscular-disease panel cohort reported a definitive diagnosis rate of 35.9%.
Peripheral neuropathy: Evaluate suspected peripheral neuropathy using targeted NGS, multigene-panel testing, or related molecular testing.
A peripheral-neuropathy panel cohort reported a molecular diagnosis rate of 8.4%; results and clinical phenotype should guide interpretation.

Denial Risk

Targeted-Panel Criteria Must Be Met

Targeted-panel testing of five or more genes is medically necessary only when the patient has signs or symptoms of a heritable neurological disorder, results are expected to directly impact management, and the testing is intended to establish a genetic cause for a qualifying disorder.

Qualifying disorders include congenital or metabolic myopathy, ataxia, peripheral neuropathy, hereditary spastic paraplegia, and muscular dystrophy.

Note

FDA Approval Alone Does Not Establish Coverage

FDA approval or clearance of a genetic test, laboratory, platform, or device alone does not establish coverage. Coverage remains subject to the applicable benefit provisions and medical-necessity criteria.

Note

Document Genetic and Family-Planning Implications

When genetic testing is pursued, document the suspected or established genetic diagnosis and the clinical purpose of testing, including relevant genetic counseling, pedigree or family-history analysis, and implications for family planning when applicable.

Explain how results may affect diagnosis, management, prognosis, or screening of relatives.
Address reproductive and family-planning implications when relevant.

Prior Authorization

Qualified Specialist Ordering or Consultation Required

Targeted-panel testing must be ordered by, or performed in consultation with, an appropriately qualified specialist. The ordering or consulting clinician should document the clinical indication and how the test results are expected to affect medical management.

Medical geneticist
Developmental pediatrician
Adult or pediatric neuromuscular specialist
Neurogenetics specialist

Documentation Required

Pediatric Neuromuscular Consultation

For suspected congenital muscular dystrophy or another congenital neuromuscular disorder, obtain consultation from a pediatric neuromuscular specialist when clinically appropriate and document the specialist’s assessment, qualifying signs or symptoms, and testing rationale.

Document the relationship between the specialist evaluation and the suspected genetic cause.
Include supporting examination and diagnostic-test findings in the medical record.

DefinitionAn abnormality resulting from certain inborn errors of metabolism, such as the glycogen storage diseases and the fatty acid metabolism defects. The clinical presentation may include muscle cramps, exercise intolerance, and progressive weakness in the trunk and extremities.

Targeted Panel

DefinitionA curated assay that simultaneously tests more than one gene associated with a condition. It may consist of multiple genes associated with one specific genetic condition or with a symptom or nonspecific clinical presentation.