Tourette's Syndrome
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Clinical policy governing medical necessity, covered assessments, and treatments for Tourette's syndrome for Aetna members; applies to clinical providers seeking coverage determination for diagnostic and therapeutic services.
No material clinical or coverage changes in this revision.
Coverage Criteria
inv-01: Medical necessity — diagnostic selection criteria
Covered when ALL of the following are met:
All five elements must be met.
inv-02: Covered assessments and treatments
When the above selection criteria are met, the following are considered medically necessary:
EEG/neurology consult is conditional and indicated only with focal signs or suspicion of seizure/degenerative disease.
Self‑administered medications are covered under the pharmacy benefit; formulary restrictions may apply.
inv-03: DBS — candidate selection
Covered when ALL of the following are met (per guideline consensus and study contexts):
Based on European guideline recommendations and published DBS studies; DBS should be performed in specialized centers and ideally within controlled trials.
inv-04: Pharmacologic and behavioral therapy — Initial and continued therapy
Initial and continued therapy — consider medications and behavioral therapy as first-line:
Recommendations derived from systematic reviews and guideline consensus; stronger preference for alpha‑2 agonists in children.
inv-05: Experimental or insufficient evidence treatments
Not routinely covered/considered experimental or investigational when used for TS outside trials:
Cochrane and systematic reviews cite insufficient or preliminary evidence for these interventions.
inv-06: Evidence-based treatment considerations
Clinical guidance and evidence summaries indicating when therapies may be appropriate:
Based on systematic reviews and guideline consensus.
Weak recommendations due to side‑effect profiles.
CBIT evidence graded as probably efficacious/moderate confidence in systematic reviews.
Evidence limited to small trials and case series.
DBS considered evolving; careful patient selection and multidisciplinary evaluation required.
Guideline and review sources describe efficacy and adverse‑effect considerations.
inv-07: Evidence summaries for investigational/early treatments
Evidence summaries and outcomes for investigational treatments in this document section
Pilot study data; clinical significance unconfirmed.
No definitive superiority over sham demonstrated.
Early randomized evidence in small sample.
Preliminary behavioral data.
Promising phase IIb data pending larger confirmatory trials.
Negative/inconclusive RCT results reported.
Biomarker research remains investigational and not ready for clinical application.
Numerous assessment and treatment procedures are explicitly listed as experimental and investigational for Tourette's syndrome due to insufficient evidence of effectiveness. Examples include advanced assessments (e.g., computerized EEG/brain mapping, measurement of cytokines or T‑cell subsets, microRNAs as biomarkers, routine neuroimaging for diagnosis) and a broad range of therapeutic interventions (e.g., adaptive/responsive deep brain stimulation, several neuromodulation techniques, IVIG, many novel pharmacologic agents, and behavioral/device combinations). These services are identified in the policy as not supported for routine clinical use outside of well‑designed clinical trials.
Most Aetna medical plans exclude coverage of educational interventions. Under these plans, educational and achievement testing and educational interventions (including classroom environmental manipulation, academic skills training, and parental training) are not covered; providers and members should check the member's benefit plan description for specific coverage details.
The policy specifically lists several examples of procedures and treatments considered investigational or lacking sufficient evidence for Tourette's syndrome, including botulinum toxin (Botox) injections, various forms of biofeedback/EEG neurofeedback, bilateral stereotactic lesions of the anterior cingulate gyrus, bilateral thalamic stimulation (outside established DBS contexts), intravenous immunoglobulins (IVIG), and repetitive transcranial magnetic stimulation (rTMS). These interventions are not routinely covered for TS outside controlled clinical studies.
A systematic review and meta-analysis found limited and mixed data regarding the use of sodium valproate in children with Tourette's syndrome. While some small randomized trials reported reductions in YGTSS scores versus controls, pooled analyses showed no significant difference for number of tics in several trials; the authors concluded that routine use of sodium valproate in children with TS is not recommended based on the limited evidence and that further well‑conducted long‑term trials are needed.
Evidence for cannabinoid-based products in Tourette's is limited. A Cochrane review identified only two small randomized trials (total n=28) of delta‑9‑THC with modest and inconsistent improvements on some measures; larger reviews of cannabinoid RCTs across psychiatric disorders found limited short‑term effects and no evidence supporting mid‑ to long‑term effectiveness. Accordingly, cannabinoid products and cannabis flower are considered investigational for TS pending more robust data.
Randomized clinical trials of deutetrabenazine in children and adolescents with Tourette's syndrome did not demonstrate statistically significant improvement versus placebo on primary YGTSS endpoints in multiple phase II/III and phase III studies (including ARTISTS‑2). Trial results therefore do not support routine coverage of deutetrabenazine for tic reduction outside of research contexts, and any consideration should document trial details and the lack of demonstrated efficacy.
This Clinical Policy Bulletin provides a general description of plan or program benefits and criteria for Tourette's syndrome assessment and treatment. It is not a contract and does not replace the member's benefit plan documents; coverage determinations remain subject to the specific terms, exclusions, and limitations of the member's health plan.
Procedures and services listed under the policy's Experimental and Investigational section are considered not medically necessary for Tourette's syndrome due to insufficient evidence for this indication. Examples include adaptive DBS variants, cannabinoids, cranial electrotherapy stimulation, EEG biofeedback, IVIG, many novel neuromodulation techniques, deutetrabenazine, valbenazine, tDCS, rTMS variants, and others listed in the policy.
Cochrane and systematic reviews identified only small randomized trials of cannabinoids for tics (combined n approximately 28 across trials) and concluded there is insufficient evidence to support their use for tics or obsessive‑compulsive symptoms in TS; broader reviews similarly reported low‑to‑moderate quality evidence and no support for cannabis flower or current cannabinoid products as effective mid‑ or long‑term treatments.
Several interventions have low‑quality or insufficient evidence and are therefore considered investigational or not medically necessary for TS pending larger, rigorous trials. Examples include N‑acetylcysteine (NAC) (randomized trial showed no benefit), acupuncture (small trials with bias concerns), and various dietary or other physical interventions where evidence is limited or of low certainty.
Available trials of cannabis flower and related cannabinoid products do not provide robust evidence of benefit for Tourette's syndrome, and systematic reviews have highlighted trial limitations, small sample sizes, and failure to demonstrate durable effects. The policy therefore does not support use of cannabis flower or current cannabinoid formulations for TS outside investigational settings.
Many neuromodulation and device approaches remain in early, small, or single‑site pilot studies without replication. Examples include prefrontal cortical electrical stimulation (pilot N=4 with transient benefit at 6 months), cranial electrotherapy stimulation (CES) (randomized sham‑controlled trial with no significant between‑group difference at 4 weeks), and real‑time fMRI neurofeedback (small randomized crossover trial showing promise but requiring validation). These interventions are investigational until larger confirmatory studies are available.
Coding
| 90785 | Interactive complexity (List separately in addition to the code for primary procedure). |
| 90832 | Psychotherapy, 30 minutes with patient and/or family member. |
| 90838 | Psychotherapy, 60 minutes with patient and/or family member when performed with an evaluation and management service (List separately in addition to the code for primary procedure). |
| 90839 | Psychotherapy for crisis; first 60 minutes. |
| 90840 | Psychotherapy for crisis; each additional 30 minutes (List separately in addition to code for primary service). |
| 95812-95830 | Routine electroencephalography. |
| 99201-99215 | Evaluation and management, office or other outpatient services. |
| 0042T | Cerebral perfusion analysis using computed tomography with contrast administration, including post-processing of parametric maps with determination of cerebral blood flow, cerebral blood volume, and mean transit time. |
| 61735 | Creation of lesion by stereotactic method; subcortical structure(s) other than globus pallidus or thalamus. |
| 61863-61868 | Stereotactic implantation of neurostimulator electrode array in subcortical site, with/without microelectrode recording (includes related 61864, 61867, 61868). |
| E0732 | Cranial electrotherapy stimulation (CES) system, any type. |
| A4596 | Cranial electrotherapy stimulation (CES) system supplies and accessories, per month. |
| A9583 | Injection, Gadofosveset Trisodium, 1 ml. |
| A9585 | Injection, gadobutrol, 0.1 ml. |
| L8679-L8689 | Implantable neurostimulator and related device codes (generators, programmers, adaptors, recharging systems). |
| F95.2 | Tourette's disorder |
| J1561-J1569 | Various immune globulin IV/IM product codes (e.g., Gamunex, Octagam, Gammagard), 500 mg units. |
| J0132 | Injection, acetylcysteine, 100 mg. |
| J0475-J0476 | Baclofen injections / intrathecal trial codes (10 mg and intrathecal trial 50 mcg). |
| J0585-J0587 | Botulinum toxin type A/B codes (per unit/100 units). |
Provider Actions and Prior Authorization
Coverage contingent on meeting Tourette's selection criteria
Certain procedure and drug codes listed in this policy are covered only when the Tourette’s selection criteria are met; prior authorization may be required per plan for these services.
Prior authorization: deep brain stimulation (DBS) requires documentation
DBS should be considered only for adult patients with severe, treatment‑refractory Tourette’s syndrome and ideally performed within controlled trials or specialized multidisciplinary programs; prior authorization should require documentation of prior therapies tried and functional impairment.
- Candidate selection per ESSTS: adult, treatment‑resistant, severely affected patients; recommend DBS be performed in context of controlled trials.
- Prior authorization should verify documented trials of appropriate medications and behavioral therapy and evidence of significant functional impairment.
DBS for refractory TS: evolving option with safety considerations
DBS is an evolving option for a subset of medication‑refractory, severely affected patients and is associated with serious adverse events; prior authorization should verify medical refractoriness, prior therapies attempted, and that informed consent about risks was obtained.
- Registry and reviews note symptomatic improvement but also important adverse events and device complications.
- Randomized/controlled DBS trials reported serious adverse events (infections, electrode misplacement) and inconclusive short‑term efficacy.
Prior authorization: neurosurgical/implant procedures often investigational
Procedures such as deep brain stimulation variants (including combined DBS/capsulotomy) and cortical electrical stimulation are described as investigational or preliminary and would typically require prior authorization with supporting documentation of treatment‑refractoriness and multidisciplinary evaluation.
- Preliminary neurosurgical approaches (e.g., GPi‑DBS with capsulotomy) are reported only in small series and need validation by well‑designed studies.
- Prefrontal cortical electrical stimulation is a pilot proof‑of‑concept intervention requiring confirmatory trials.
Prior authorization: investigational/off‑label pharmacotherapies need trial evidence
Consider prior authorization for investigational or off‑label pharmacologic agents when evidence is limited; include trial‑grade evidence and patient‑specific rationale in the request to support medical necessity.
- Document trial phase, baseline YGTSS scores, age range, and treatment duration for investigational agents (e.g., ecopipam, deutetrabenazine).
- Drugs with negative or inconclusive RCT results (e.g., deutetrabenazine) may not meet coverage criteria without compelling justification.
Administrative note: no specific prior‑auth procedures defined in this policy text
The policy text does not specify additional administrative prior‑authorization rules beyond the clinical guidance; check plan‑specific prior authorization procedures.
- Administrative/prior‑auth procedures and contact details are provided elsewhere in plan materials; this policy describes clinical criteria rather than plan administrative workflows.
Pharmacotherapy coverage and formulary considerations
Pharmacotherapy options enumerated include typical antipsychotics, risperidone, clonidine, clonazepam, tetrabenazine, and tricyclic antidepressants; self‑administered meds are covered under the pharmacy benefit and may be subject to formulary restrictions.
- Examples listed as medically necessary when selection criteria met: aripiprazole, clonazepam, clonidine, fluphenazine, haloperidol, pimozide, risperidone, tetrabenazine, tricyclics.
- Check pharmacy formulary for coverage and prior‑authorization requirements.
Stepwise treatment: trial established medications and behavioral therapy first
Use established pharmacotherapies (alpha‑2 agonists, dopamine‑blocking agents, VMAT2 inhibitors) and behavioral therapy before considering invasive or experimental interventions; document prior trials and responses.
- Canadian guidelines and reviews recommend clonidine/guanfacine (strong for children) and antipsychotics or tetrabenazine where indicated.
- Prior authorization for advanced interventions should confirm failure/intolerance of appropriate pharmacologic and behavioral therapies.
Pediatric step preference: start with alpha‑2 agonists
For pediatric pharmacologic treatment, alpha‑2 adrenergic agonists (clonidine, guanfacine) are favored as first‑line agents; reserve antipsychotics for when these are ineffective or poorly tolerated.
- Systematic reviews show moderate certainty for clonidine/guanfacine benefit in children.
- High side‑effect rates with antipsychotics lead to weaker recommendations—use when benefits outweigh risks.
Pharmacologic step considerations: mixed evidence for VMAT2 and novel agents
Evidence for VMAT2 inhibitors and other novel agents is mixed or insufficient; document prior trial history and rationale when seeking coverage for these agents.
- Open‑label and small trials have mixed results (valbenazine failed to show statistical efficacy; deutetrabenazine trials failed primary endpoints).
- Provide prior treatment history and justification if requesting coverage for VMAT2 or other novel agents.
Behavioral therapy (CBIT/HRT) recommended as initial step
Behavioral interventions such as Comprehensive Behavioral Intervention for Tics (CBIT)/habit reversal therapy and relaxation techniques have evidence of effectiveness and should be considered early as initial therapy.
- Systematic reviews show HRT/CBIT reduces tics with moderate certainty; relaxation therapy showed benefit in small trials but less than HRT.
- Document trials of behavioral therapy (CBIT/HRT) when considering escalation to pharmacologic or invasive therapies.
No explicit administrative step‑therapy rules defined in this policy
No formal step‑therapy rules (programmatic forced‑step requirements) are defined in the reference and policy history chunks; clinical guidance emphasizes trial of established behavioral and pharmacologic options prior to investigational or surgical therapies.
- Policy provides clinical sequencing guidance but does not prescribe explicit administrative step‑therapy pathways or visit limits.
- Check plan specifics for any operational step‑therapy programs.
Required clinical documentation for diagnosis
Medical evaluation including complete history and physical examination is necessary for diagnosis; EEG or neurology consult is indicated only with focal signs or clinical suggestion of seizure or degenerative condition.
- Diagnosis is clinical—document history, family history, direct observation, and physical exam.
- Order EEG/neurology consult only when focal signs or seizure are suspected.
Clinical justification required for advanced/surgical therapies
Clinical justification for advanced or surgical therapies must document significant functional impairment, failure of conventional pharmacologic and behavioral interventions, and rationale for target selection given variable evidence across targets.
- Documentation should include trials attempted, objective measures of tic severity/functional impact, and multidisciplinary evaluation.
- Discuss risks (cognitive, oculomotor adverse effects) and obtain informed consent.
DBS candidate documentation: severity, refractoriness, prior therapies, and outcome measures
For DBS candidate consideration, include documentation of severe, medically refractory Tourette’s syndrome, prior treatments tried and failed, target selection rationale, and anticipated benefit; reported trials enrolled adults 18–60 with severe refractory TS.
- Include pre‑ and post‑procedure standardized tic severity scores (e.g., YGTSS, Modified Rush) used in trials.
- Confirm multidisciplinary assessment and that DBS is being considered in a specialized program or trial.
Documentation: include severity, prior therapy history, target rationale, and standardized outcome measures
Required documentation for advanced interventions should include severity and refractoriness of tics, prior therapy history, target selection rationale, and pre‑ and post‑procedure standardized tic severity scores (e.g., YGTSS, Modified Rush).
- Trials and reports routinely use YGTSS and Modified Rush scores—include baseline and follow‑up values.
- For investigational devices or combined procedures, provide trial phase or registry identifiers when applicable.
Document trial details when requesting coverage for investigational therapies
When considering investigational therapies in a trial context (e.g., ecopipam, deutetrabenazine), document trial phase, patient age range, baseline YGTSS scores, treatment duration, and other trial parameters to support prior authorization or coverage decisions.
- Phase IIb ecopipam trial enrolled children/adolescents with baseline YGTSS‑TTS ≥20 and reported significant reduction at 12 weeks.
- Deutetrabenazine phase II/III and ARTISTS 2 trials failed to meet primary endpoints—include trial results when requesting coverage.
Administrative resources and contact information — follow plan procedures
Administrative resources, policy glossary, and contact information are provided in the policy materials, but no additional provider‑level documentation requirements are specified in these reference chunks.
- Policy history and additional information links are available; follow plan‑specific administrative instructions for prior authorization submission and contacts.
Denial risk: experimental and investigational interventions
Requests for procedures and services listed as experimental and investigational (e.g., DBS variants, cannabinoids, cranial electrotherapy stimulation, EEG biofeedback, IVIG, and many novel pharmacologic or neuromodulation techniques) are considered experimental/investigational and can be denied.
- The policy explicitly lists numerous assessment and treatment procedures as experimental/investigational and not routinely covered outside controlled studies.
- Prior authorization requests lacking sufficient evidence or trial context for these interventions may be denied.
Denial risk: inadequate documentation for DBS candidate selection
DBS is recommended only for adult, treatment‑resistant, severely affected patients and ideally performed in the context of controlled trials; lack of documentation of treatment resistance or inadequate prior‑therapy evidence may trigger denial.
- ESSTS guidance strongly recommends DBS only in adults with severe, treatment‑resistant TS and within controlled trials.
- Prior authorization should document failed adequate trials of pharmacologic and behavioral therapies and functional impairment.
Denial risk: DBS short‑term efficacy and safety concerns
A randomized short‑term trial of aGPi DBS showed no significant difference in tic severity during the 3‑month blinded period and reported serious adverse events (including infections and device complications); absence of demonstrated short‑term benefit or inadequate safety discussion may lead to denial.
- Welter et al (aGPi DBS) found no significant YGTSS improvement at 3 months and reported 15 SAEs including infections and electrode misplacement.
- Prior authorization should include discussion of SAEs and rationale for proceeding despite mixed short‑term trial results.
Denial risk: preliminary evidence for combined neurosurgical/neurostimulation approaches
Interventions such as GPi‑DBS combined with anterior capsulotomy and prefrontal cortical electrical stimulation are preliminary and based on small or uncontrolled series; lack of well‑designed studies may lead to noncoverage or denial if considered experimental.
- GPi‑DBS combined with capsulotomy reported favorable outcomes in a small retrospective series but requires validation by well‑designed studies.
- Pilot prefrontal cortical stimulation studies (N=4) showed transient improvement and need confirmatory trials.
Denial risk: negative or inconclusive RCT evidence may affect drug coverage
Drugs with negative or inconclusive randomized controlled trial results (for example, deutetrabenazine trials that failed to meet primary endpoints) may not meet criteria for coverage as effective treatments without additional supporting evidence.
- ARTISTS 2 and other deutetrabenazine studies did not demonstrate significant benefit versus placebo in primary endpoints.
- Prior authorization requests for such agents should include compelling patient‑specific rationale and trial data if seeking coverage.
Note: references and policy history do not define authorization/denial rules
The policy reference and history chunks do not present explicit authorization or denial criteria; they provide bibliographic references, policy history, and administrative notes only.
- Administrative policy history and references are available in the policy materials but do not substitute for plan prior‑authorization rules.
- For coverage decisions, apply the clinical criteria and investigational/exclusion lists in this policy and follow plan procedures.
Background
Tourette's syndrome is a familial neurobehavioral disorder characterized by fluctuating motor and vocal tics that typically begin in childhood or adolescence. Diagnosis is clinical and requires multiple motor tics and one or more vocal tics at some time, onset before age 21, and persistence of tics many times per day for more than 1 year with no tic‑free period greater than 3 consecutive months. There are no definitive laboratory tests; a medical history, physical examination, and direct observation are required, and EEG or neurology consultation is reserved for cases with focal signs or concern for seizure or other neurologic disease.
Definitions
Level of Care Criteria
Treatment Modalities
inv-67: Pharmacotherapy and Psychotherapy
Self‑administered medications covered under pharmacy benefit; formulary restrictions may apply.
Covered under behavioral health benefits; continuation guided by clinical response.
inv-68: Habit Reversal Therapy (HRT)
Behavioral protocol components as described in HRT literature.
inv-69: Deep Brain Stimulation (DBS)
Selection and target uncertainty noted across case series and reviews.
inv-70: Behavioral therapy (HRT/CBIT, mindfulness-based approaches)
Evidence from systematic reviews and pilot studies supports behavioral approaches.
inv-71: Deep brain stimulation (DBS)
Randomized trial data show mixed results and notable serious adverse events; long‑term outcomes and optimal targets remain uncertain.
inv-72: DBS, responsive DBS, capsulotomy, cortical stimulation, tDCS, rTMS/TBS
Many modalities are experimental or evolving; careful evaluation required.
inv-73: Neurofeedback
Considered investigational until validated in larger studies.
inv-74: Various (pharmacologic, behavioral, surgical, neuromodulation)
Review and RCT references summarized in policy references.
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