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Fighting Misuse of Evidence in PANS/PANDAS Denials: Our Letter to the AAP
Read our letter to the American Academy of Pediatrics in collaboration with leading PANS/PANDAS organizations.

In 2024, the American Academy of Pediatrics published a Clinical Report on PANS. Despite being explicitly labeled "not a clinical guideline", this report has begun to be used by pediatrics providers, leading to failures in diagnosing and treating PANS/PANDAS.

Worse still, this report has been systematically misused by insurance providers to deny care for these patients – claiming that well-studied, evidence-backed treatment has no medical basis and thus, these patients and families have no claim to Insurance coverage for it. These denials are inappropriate and harms these young patients.

At Claimable, our role in fighting denials goes beyond generating appeals; it's about holding insurers accountable to fair, medically sound, and evidence-based practices. In this letter, we've collaborated with leading PANS/PANDAS organizations to bring light to what the science actually supports – and get these patients the treatment they deserve.

JOINT STATEMENT FROM FOUR NATIONAL PANS/PANDAS NON-PROFITS AND CLAIMABLE, A COMPANY SUPPORTING AFFECTED FAMILIES

Four leading PANS/PANDAS organizations, ASPIRE, NWPPN, PANDAS Network and the Look. Foundation, together with Claimable, a company providing advocacy and support for families navigating PANS/PANDAS, are raising serious concerns about the American Academy of Pediatrics’ (AAP) 2024 Clinical Report on PANS/PANDAS.

The AAP Report is not a clinical guideline—yet some pediatricians are citing it to block diagnosis and treatment, and by insurers to justify denials of critical therapies, including IVIG. This misuse is deeply concerning and has real-world consequences.

The report:

  • Omits key studies supporting the use of IVIG and steroids
  • Conflicts with peer-reviewed clinical guidelines from institutions like Stanford, Columbia, and the NIMH
  • Lacks transparency regarding authorship and expert input
  • Advises against important diagnostic tools like strep testing
  • As a result, children are being misdiagnosed, undertreated, or denied care altogether—leading to psychiatric crises, medical complications, and devastating impacts on families.

We respectfully urge the following actions:

  • The AAP should retract and revise the report to address its omissions and clarify its intended use
  • Pediatricians should rely on the established, peer-reviewed clinical guidelines
  • (JCAP) for diagnosing and treating PANS/PANDAS
  • Insurers should stop using the report to deny care and revisit all IVIG denials based on it

This is about more than policy—it's about protecting children from preventable suffering. We stand united in calling for an evidence-based, compassionate, and transparent approach to care.

DATE: July 25, 2025

RE: Rebuttal to the American Academy of Pediatrics Clinical Report on PANS (12/16/24)

TO:
Dr. Susan J. Kressly, M.D., FAAP, President, Board of Dir. American Academy of Pediatrics:
345 Park Boulevard Itasca, IL 60143
Dr. Pamela K. Shaw, M.D., FAAP, President-Elect, Board of Dir. American Academy of Pediatrics:
345 Park Boulevard, Itasca, IL 60143
Dr. Moira A. Szilagyi, M.D., Ph.D., Past Pres.-Elect, Board of Dir. American Academy of Pediatrics
: 345 Park Boulevard, Itasca, IL 60143
Dr. Brian P . Sanders, M.D., FAAP, Secretary/Treas., Board of Dir. American Academy of Pediatrics:
345 Park Boulevard, Itasca, IL 60143
Mark D. Del Monte, J.D. CEO/Exec.VP , Board of Dir. American Academy of Pediatrics:
345 Park Boulevard, Itasca, IL 60143
Robert F . Kennedy Jr, Sec. of Health & Human Serv:
Hubert H. Humphrey Building, 200 Independence Avenue, S.W.

CC:
Cory Harris, President & CEO, Wellmark:
1331 Grand Avenue, Des Moines, IA 50309
David Cordani, Chairman & CEO, The Cigna Group:
900 Coage Grove Road, Bloomfield, CT 06002
David Joyner, President, CVS Caremark:
1 CVS Drive, Woonsocket, RI 02895
Gail Boudreaux, President & CEO, Elevance Health:
220 Virginia Avenue, Indianapolis, IN 46204
Joseph Zubretsky, President & CEO, Molina Healthcare:
200 Oceangate, Suite 100, Long Beach, CA 90802
Kimberly Keck, President & CEO, Blue Cross Blue Shield Assoc.:
200 E. Randolph Street, Chicago, IL 60601
Sarah London, CEO, Centene Corporation:
7700 Forsyth Boulevard, St. Louis, MO 63105
Stephen Helmsley, CEO, UnitedHealth Group:
9900 Bren Road East, Minnetonka, MN 55343

Dear Drs. Kressly, Shaw, Szilagyi, and Sanders, Mr. Del Monte, and Secretary Kennedy:

We are compelled to respond to the American Academy of Pediatrics' (“ AAP”) Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Clinical Report (“Report”) published on December 16, 2024, which is now being misused by pediatric providers to diagnose and treat PANDAS/PANS, as well as by insurers to justify the denial of IVIG coverage.The AAP itself explicitly states that this document is not a clinical guideline and should not be used to dictate treatment decisions:

"Because they are limited by the present level of evidence on the topic, the findings are presented as a report rather than a clinical practice guideline."

Despite this disclaimer, pediatric providers are misapplying the report by disregarding established clinical guidelines, leading to failures in properly diagnosing and treating PANDAS/PANS. At the same time, insurers are misusing the report as definitive evidence against IVIG, ignoring its limitations, lack of transparency, and omied research. This misrepresentation threatens access to critical treatment and delays necessary medical care..

OUR IMMEDIATE REQUEST

Given the serious flaws in the AAP Report and the inappropriate ways in which it is being used, we call for the following immediate actions.:

  • The AAP must retract this report until its flaws are corrected and its intended use is clarified. Its lack of transparency, omitted research, and misrepresentation of IVIG make it unreliable and misleading.
  • The imperative of medical rule-out in psychiatric diagnoses: Under the DSM-5 guidelines, mental health practitioners and physicians must rule out any underlying medical cause before assigning a psychiatric diagnosis. However, much of this report relies heavily on psychiatric labeling. Failing to perform an “etiological medical rule-out” not only risks medical negligence but can also deny patients access to accurate, potentially life-saving diagnoses and treatments.
  • Insurers must stop using this report to deny care. It is not a clinical guideline, and its misuse harms families and obstructs physician-led treatment.
  • All IVIG denials based on this report must be reconsidered immediately in light of strong medical evidence supporting its use for moderate-severe PANS/PANDAS.

CONSEQUENCES OF A FAILURE TO ACT

The failure to act allows pediatricians and insurers to continue leveraging an incomplete document at the expense of patient care, forcing children into needless suffering and irreversible harm. Without treatment, these children may experience a panoply of consequences, including:

  • Severe neuropsychiatric decline, leaving them unable to speak, eat, or attend school
  • Malnutrition and medical starvation, requiring hospitalization and feeding tubes
  • Increase in autoimmune biomarkers demonstrated in 54.2% of children in a 2024 cohort study by Ma et al
  • Psychiatric crises, leading to emergency interventions and long-term disability
  • Permanent cognitive and developmental regression, forcing families into financial hardship
  • Fatalities - The POND brainbank was established in 2022 with the goal of understanding the pathogenesis and mechanisms associated with PANS/PANDAS. The 11 specimens within the brain bank were donated by the families of their deceased children.

When pediatric providers rely on a non-guideline document to guide diagnosis and treatment, it undermines evidence-based care and delays appropriate interventions, worsening outcomes and increasing long-term costs. Likewise, denying IVIG does not reduce costs—it escalates them, shifting the burden to emergency hospitalizations, feeding interventions, and more expensive treatments like plasmapheresis. Both examples fail to recognize established diagnostic and treatment guidelines published by subject experts having worked in the field of PANDAS/PANS for 30 years.

Why the AAP Report Fails as Pediatric Clinical Guidance and Justification for IVIG Denial

  1. It Is Not a Clinical Guideline.
    The AAP explicitly states that this report does not provide official treatment recommendations. It lacks consensus-based standards and does not establish clear directives for insurers to follow. This may represent misuse of clinical reports in medical practice.
  2. Impedes Access to Testing and Diagnosis.
    The 2024 AAP Report on PANS/PANDAS restricts key diagnostic tools, advising against routine streptococcus testing (e.g., throat cultures, rapid antigen tests) unless classic symptoms like pharyngitis are present, and discouraging brain imaging (e.g., MRI) unless focal neurological signs suggest alternative diagnoses such as autoimmune encephalitis. The imposed limitations risk delaying or preventing accurate diagnosis, making it harder for families to access appropriate testing, specialist care, and insurance coverage—ultimately obstructing timely intervention for children with acute-onset neuropsychiatric symptoms while driving up longer term direct and indirect costs to families, employers and insurers.
  3. Lack of Transparency and Expert Input
    The AAP report does not disclose its authors or the specialists consulted, raising serious credibility concerns. There is no indication that experts in pediatric neuroimmunology, infectious disease, or immunology—fields essential to understanding PANS/PANDAS as well as IVIG’s role—were involved.
  4. The AAP did not consult any of the major multidisciplinary university clinics that research and treat PANS/PANDAS. These institutions represent thousands of cases of collective experience, yet their input was neither sought nor included.
    "By failing to adequately disclose potential conflicts of interest, the AAP violated transparency standards, calling the report’s validity into question. According to International Committee of Medical Journal Editors (ICMJE) standards:

    "Authors should disclose relationships and activities that readers could perceive to have influenced, or that give the appearance of potentially influencing, their work. This includes, but is not limited to, relationships with for-profit and not-for-profit third parties whose interested may be affected by the content of the manuscript."
  5. Omits Key Studies and Is Already OutdatedThe review period for the AAP report ended in 2023, meaning it fails to incorporate newer research—including Melamed et al. (2024)— which demonstrated statistically significant improvements in OCD-related symptoms following IVIG treatment. Additionally, the omission of studies on the use of steroids to shorten the duration of flares.Even within its stated review period, the report omitted clinical guidelines and studies that support the use of steroids and IVIG, including: 1. Swedo, Cooperstock, Frankovich, Thienemann et al. (2017): Consensus Guidelines explicitly include IVIG as a recommended treatment for severe cases. These expert-driven guidelines remain a valid and authoritative clinical framework.2. Pavone (2020), Hajjari (2022), and Eremija (2023): All demonstrated IVIG’s effectiveness for severe or persistent cases.3. Melamed et al. (2021): A multi-site, open-label study of 21 patients over six monthsb showed measurable improvements in psychological function with IVIG. Results were statistically significant.4. Brown K, Farmer C, Farhadian B, Hernandez J, Thienemann M, Frankovich J. (2017): Corticosteroids may be a helpful treatment intervention in patients with new-onset and relapsing/remitting PANS and PANDAS, hastening symptom improvement or resolution. When corticosteroids are given earlier in a disease flare, symptoms improve more quickly and patients achieve clinical remission sooner. Additionally, the AAP report selectively dismisses positive IVIG studies due to small sample sizes while accepting weak or inconclusive evidence against IVIG without applying the same scrutiny, introducing bias into its conclusions.

Further, standard prescribing and coverage policies routinely approve off-label pediatric treatments (Carmack et al., 2020; Allen et al., 2018; Shah et al., 2007) and therapies for small patient populations using similar evidence standards. PANS/PANDAS is widely accepted to be a rare disease, and thus large multi-arm randomized and double-blinded studies are methodologically impractical.

A 2025 randomized, placebo-controlled Phase III study (NCT04508530) of PANZYGA® in PANS patients demonstrated a clinically meaningful reduction in CY-BOCS scores (31. 1% improvement vs. 12. 1% in placebo), though the p-value narrowly missed statistical significance (p = 0.072).

However, the secondary endpoint—the Clinical Global Impression scale (CGI-I)—achieved statistical significance (p = 0.017), validating PANZYGA®'s real-world clinical benefit across multiple domains of functioning. These findings directly contradict the AAP Report’s implication that evidence for IVIG is weak or unreliable.

Denials Based on This Report Contradicts Cost-Saving Measures

Blocking access to IVIG is not only harmful—it is financially irresponsible. Calaprice et al. (2023) found that unrestricted access to care for PANS results in more symptom-free days, significantly reducing the need for costly hospitalizations, psychiatric admissions, emergency interventions, and lost wages for caregiving parents.

When IVIG is denied, families face greater financial and medical burdens, including:

  • Severe psychiatric hospitalizations
  • Feeding tube interventions due to OCD-driven food refusal
  • Plasmapheresis, a far more expensive treatment that could have been avoided with IVIG

Families who are denied access based on the AAP Report have been forced to pay out of pocket, which serves to further widen the disparities associated outcomes along socioeconomic lines. Access problems caused by sequential denials may only be ameliorated with access to legal counsel, which again is generally not widely available to many families.

PEDIATRIC PROVIDERS ARE FAILING TO PROPERLY DIAGNOSE AND TREAT PANDAS/PANS — AND INSURERS ARE MISUSING THE AAP REPORT TO JUSTIFY DENIALS.

Many pediatric providers are citing the AAP Report to justify treating PANS/PANDAS solely as a psychiatric condition—directly contradicting peer-reviewed, evidence-based guidelines developed by the PANS Research Consortium. These guidelines were published in JCAP in 2017 and 2019, authored by leading experts from institutions including Stanford, Columbia, and the NIMH. Yet due to the AAP’s institutional weight, its flawed report is often prioritized over these more specialized clinical standards.

This widespread clinical misapplication is not occurring in isolation–insurers are seizing on it to justify treatment denials and further restrict access to care.

A review of over 100 denied PANS/PANDAS-related cases shows an accelerating paern since early 2025: insurers are increasingly invoking the 2024 AAP Report in ways that distort its intent. Although the report explicitly states it is not a clinical guideline, it is being treated as one—used to justify denials and restrict access to care, often without appropriate clinical justification or specialty input.

For example, Wellmark justified a denial by stating:

"A recent AAP review article-position published recently indicates essentially nothing has changed regarding the utilization of IVIG in the treatment of presumed PANS-PANDAS."

Here, Wellmark conflates the AAP Report and the outdated AAP Red Book, using both to assert a lack of evidence while disregarding more current, supportive data.

Premera Blue Cross similarly cited the AAP to dismiss IVIG, asserting:

"In 2024, the American Academy of Pediatrics (APP) published a clinical report in which their expert panel concluded... there are no well-designed trails that provide evidence-based guidance on treatment for PANS' symptoms..."

Premera’s framing misrepresents the evidence base, and the denial falsely implies that psychiatric and antibiotic care alone is sufficient—despite acknowledging that PANS is likely a valid diagnosis.

These examples demonstrate a dangerous pattern: insurers are using a non-guideline report to undermine medical judgment, deny treatment access, and sidestep robust clinical evidence.

CONCLUSION

The AAP report is not a clinical guideline and should not be used to dismiss diagnosis or treatment of PANS/PANDAS by pediatric providers, nor to justify IVIG denials. Coverage decisions must be based on clinical needs and strong medical evidence supporting IVIG for PANS/PANDAS.

We urge the following immediate actions:

  • Pediatricians must stop using the flawed AAP report in place of well-established, evidence-based clinical guidelines that are essential for the proper diagnosis and treatment of PANS/PANDAS.
  • The AAP should retract the report until its flaws are addressed and its intended use clarified.
  • Insurers must stop using the report for utilization management to deny care.
  • Insurers must reconsider all IVIG denials based on this report.
  • Employer fiduciaries of self-funded plans must ensure the AAP report is not used to restrict care.
  • State Departments of Insurance should sanction insurers for misusing unsound evidence in unsound coverage determinations.

The continued misuse of this non-guideline report to dismiss diagnosis and deny treatment is an unacceptable violation of the principles of non-maleficence (do no harm) and beneficence (act in the patient’s best interest). Denying IVIG based on this flawed report is medically unsound, financially reckless, and ethically indefensible—contradicting clinical guidelines, increasing long-term costs, and undermining clinician authority.

Sincerely,

Gabriella True, President, ASPIRE
Warris Bokhari, MD
, CEO & Co-Founder, Claimable
Jennifer M. Vitelli, MBA,
Executive Director, Look. Foundation
Sarah Lemley MPA; HA
, Executive Director, Northwest PANDAS/PANS Network
Diana Pohlman
, Executive Director, PANDAS Network

COMPARISON OF AAP REPORT CLAIM VS. LITERATURE EVIDENCE

AAP REPORT CLAIM EVIDENCE-BASED RESPONSE
IVIG lacks a robust evidence base for efficacy in treating PANS. Two randomized, placebo-controlled trials show significant improvements with IVIG. At least seven additional studies demonstrate benefits in neuropsychiatric outcomes and immune markers. Animal models also show abnormal behavior reversed after IVIG, supporting its mechanism of action.
IVIG carries significant risks In every trial to date, IVIG was well tolerated in PANS. The most common adverse events are headache, nausea, and vomiting, which are typically mild or moderate and self-limiting (e.g. Melamed 2021)
The pathophysiology of PANS is unclear PANS is an immune mediated neuroinflammatory disorder as is evidenced by a)animal model demonstrating Th17 mediated blood brain barrier breakdown, b)elevations in inflammatory monocytes and immune activation markers during flares, c) abnormal cytokine levels in patients, d) extremely high rate of family history of autoimmunity and known association with genetic variants affecting immune system, e) microbiome alterations in patients, f) association with immunoglobulin deficiencies, g) elevated markers of neuronal damage, h)autopsy data, h)polysomnography abnormalities similar to other basal ganglia disorders, i)neuroimaging studies showing basal ganglia edema during flares, j)elevated anti dopamine receptor antibodies, k) clinical similarities including treatment response to Sydenham Chorea, a well recognized post-infectious neuroimmune disorder.
RCT and Systematic Reviews Are Inconclusive Two randomized controlled trials (Perlmuer 1998 and Daines 2025—publication pending, data available online) have demonstrated the benefit of IVIG. The most authoritative review (Frankovich 2017) reflects consensus from experts in psychiatry, pediatrics, infectious disease, neurology, immunology, and related fields across NIH, major academic centers, and large practices. These RCTs and expert guidelines support IVIG for severe or refractory PANS and PANDAS. The PANDAS Physicians Network, an international consortium of researchers and clinicians, maintains updated treatment guidelines that continue to recommend IVIG as safe and effective in such cases.
Should Not Be Used Outside Clinical Trials or Specialty Centers Currently, there is no clinical trial of IVIG in PANS in progress. Specialty centers lack capacity to manage the volume of cases in the community. Stanford’s Immune Behavioral Health Clinic, for instance, can accept only 10% of referrals. Waiting lists for all PANS specialty centers are months to years. For this reason, PPN provides guidelines for community physicians such as “Seeing Your First Child with PANDAS/PANS,” since delaying care to wait for a trial or tertiary appointment is associated with worse neurological outcomes and more persistent disease.

REFERENCES

CLINICAL RESEARCH STUDIES

Calaprice-Whitty D, Tang A, Tona J. Factors associated with symptom persistence in PANS: Part I-Access to care. J Child Adolesc Psychopharmacol. 2023;33(9):356-364. doi:10. 1089/cap.2023.0022. Epub 2023 Oct 30. PMID: 37902790.

Kulumani Mahadevan LS, Murphy M, Selenica M, Latimer E, Harris BT . Clinicopathologic characteristics of PANDAS in a young adult: a case report. Dev Neurosci. 2023;45(6):335-341. doi:10. 1159/000534061. Epub 2023 Sep 12. PMID: 37699369; PMCID: PMC10753865.

Pavone P , Falsaperla R, Cacciaguerra G, et al. PANS/PANDAS: clinical experience in IVIG treatment and state of the art in rehabilitation approaches. NeuroSci. 2020;1:75–84. doi:10.3390/neurosci1020007.

Melamed I, Kobayashi RH, O’Connor M, et al. Evaluation of intravenous immunoglobulin in pediatric acute-onset neuropsychiatric syndrome. J Child Adolesc Psychopharmacol. 2021;31(2):118-128. doi:10. 1089/cap.2020.0100.

Hajjari P , Oldmark MH, Fernell E, et al. Pediatric acute-onset neuropsychiatric syndrome (PANS) and intravenous immunoglobulin (IVIG): comprehensive open-label trial in ten children. BMC Psychiatry. 2022;22(1):535. doi:10. 1186/s12888-022-04181-x. PMID: 35933358; PMCID: PMC9357317.

Eremija J, Patel S, Rice S, Daines M. Intravenous immunoglobulin treatment improves multiple neuropsychiatric outcomes in patients with pediatric acute-onset neuropsychiatric syndrome. Front Pediatr. 2023;11:1229150. doi:10.3389/fped.2023. 1229150. PMID: 37908968; PMCID: PMC10613689.

Melamed I, Rahman S, Pein H, et al. IVIG response in pediatric acute-onset neuropsychiatric syndrome correlates with reduction in pro-inflammatory monocytes and neuropsychiatric measures. Front Immunol. 2024;15:1383973. doi:10.3389/fimmu.2024. 1383973.

Vreeland A, et al. Postinfectious inflammation, autoimmunity, and obsessive-compulsive disorder: Sydenham chorea, pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection, and pediatric acute-onset neuropsychiatric disorder. Dev Neurosci. 2023;45(6):361-374. doi:10. 1159/000534261.

Carmack M, Hwang T , Bourgeois FT . Pediatric Drug Policies Supporting Safe And Effective Use Of Therapeutics In Children: A Systematic Analysis. Health A (Millwood). 2020 Oct;39(10):1799-1805. doi: 10. 1377/hlthaff.2020.00198. PMID: 33017255.

Allen HC, Garbe MC, Lees J, Aziz N, Chaaban H, Miller JL, Johnson P , DeLeon S. O-Label Medication use in Children, More Common than We Think: A Systematic Review of the Literature. J Okla State Med Assoc. 2018 Oct;111(8):776-783. PMID: 31379392; PMCID: PMC6677268.

Zheng J, Frankovich J, McKenna ES, et al. Association of Pediatric Acute-Onset Neuropsychiatric Syndrome With Microstructural Differences in Brain Regions Detected via Diffusion-Weighted Magnetic Resonance Imaging. JAMA Network Open. 2020;3(5):e204063. doi:10. 1001/jamanetworkopen.2020.4063.

Johnson M, Ehlers S, Fernell E, et al. Anti-Inflammatory, Antibacterial and Immunomodulatory Treatment in Children With Symptoms Corresponding to the Research Condition PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome): A Systematic Review. PloS One. 2021;16(7):e0253844.

Trifiletti R, Lachman HM, Manusama O, et al. Identification of Ultra-Rare Genetic Variants in Pediatric Acute Onset Neuropsychiatric Syndrome (PANS) by Exome and Whole Genome Sequencing. Scientific Reports. 2022;12(1):11106

Xu J, Frankovich J, Liu RJ, et al. Elevated Antibody Binding to Striatal Cholinergic Interneurons in Patients With Pediatric Acute-Onset Neuropsychiatric Syndrome. Brain, Behavior, and Immunity.

Shah SS, Hall M, Goodman DM, et al. Off-label drug use in hospitalized children [published correction appears in Arch Pediatr Adolesc Med. 2007 Jul;161(7):655]. Arch Pediatr Adolesc Med. 2007;161(3):282-290. doi:10. 1001/archpedi. 161.3.282.

Michael Daines, MD (PI). A Superiority Phase 3 Study to Compare the Eect of Panzyga Versus Placebo in Patients with Paediatric Acute-Onset Neuropsychiatric Syndrome, protocol NGAM-13.

Perlmutter SJ, Leitman SF , Garvey MA, Hamburger S, Feldman E, Leonard HL, et al. Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood. Lancet. 1999; 354(9185):1153–8. https:/ /doi.org/10. 1016/S0140-6736(98)12297-3.

Kovacevic M, Grant P , Swedo S. Use of Intravenous Immunoglobulin in the Treatment of Twelve Youths with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. J Child Adol Psychopharm 2015; 25(1): 65-69. DOI: 10. 1089/cap.2014.0067

Pavone P , Falsaperla R, Nicita F , et al. Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection (PANDAS): Clinical Manifestation, IVIG Treatment Outcomes, Results from a Cohort of Italian Patients. Neuropsychiatry 2018; 8(3): 854-860. DOI:10.4172/Neuropsychiatry. 1000412

LaRusso M, Gallego-Pérez DF , Abadía-Barrero CE. Untimely care: How the modern logics of coverage and medicine compromise children's health and development. Soc Sci Med. 2023 Feb;319:114962. doi:

10. 1016/j.socscimed.2022. 114962. Epub 2022 Apr 6. PMID: 35584978.

Tang AW, Appel HJ, Bennett SC, et al. Treatment barriers in PANS/PANDAS: Observations from eleven health care provider families. Fam Syst Health. 2021;39(3):477-487. doi:10. 1037/fsh0000602

Calaprice-Whiy D, Tang A, Tona J. Factors Associated with Symptom Persistence in PANS: Part I-Access to Care. J Child Adolesc Psychopharmacol. 2023;33(9):356-364

Taking It to the Next Level: An Update on Our Zepbound CVS Caremark Appeals Strategy
We're seeing mass form-letter denials of Zepbound appeals. So, it's time to escalate.

At Claimable, we’re dedicated to empowering patients to fight for the care that they deserve. That’s why, as of today, we’re officially supporting free second-level appeals for CVS Caremark Zepbound forced-switch denials — so you can be confident your case receives a full, fair, and individualized review.

First, What’s A Second-Level Appeal?

When you submit an appeal as a patient and it’s denied, it isn’t the end. You have the right to request a second-level appeal, which often involves review by a different department or an independent third party. Put simply? It’s another chance to have your case heard, and have your denial overturned.

Why We’re Escalating to Second-Level Appeals

Over the past weeks, we’ve had an influx of patients file appeals for Zepbound coverage with CVS Caremark. Unfortunately, we’ve begun to see responses to those appeals come back as form-letter denials – ignoring not only your unique health history, doctor’s notes, and plan details, but also state and federal laws. Federal rules are clear: every appeal must receive an individualized review. The copy paste answers we’re seeing? They’re not that.

In order to make sure that each of these appeals get the full and fair review they’re entitled to, it’s time to escalate it to the next level:

  • Internal vs. External Reviews
    • Internal appeal: Your denial is reviewed by CVS Caremark or your insurer. Yes, the same company that issued the denial – though federal law requires that the review be conducted by someone who wasn’t involved in the original decision.
    • External appeal: Also called an external review or, in some states, an Independent Medical Review (IMR). This is conducted by a licensed medical professional or organization not affiliated with your insurance provider, using objective, evidence-based criteria. External decisions are binding on the insurer, but you may still have the right to pursue legal action if the outcome is unfavorable.

For forced-switch denials of Zepbound, we pursue the external review – most likely to secure the coverage you need — free of charge.

What to Expect If Your First Zepbound Appeal Is Denied

  1. You Report the Denial
    Once you get the notification that your appeal has been denied, simply log into your Claimable account to report the outcome – or email us at support@getclaimable.com
  2. You Consent To Escalation
    We’ll confirm you’d like to continue to escalate to a second-level appeal. At this point, you’ll upload your appeal denial letter.
  3. We Build Your Strongest Case
    Once you consent, we’ll generate your second-level appeal package. This includes a newly drafted appeal letter with an expert legal opinion and your prior appeal materials.
  4. You Review & Submit
    We’ll notify you when your second-level appeal is ready for review.You’ll confirm where to send (fax/mail) your appeal, then click “Submit” once everything looks right.
  5. We Send – Expedited
    Claimable will fax and mail your appeal to both CVS and the independent reviewer. 

  6. Because all Zepbound forced-switch appeals involve ongoing treatment for a serious condition, your case will be marked urgent – requesting an expedited external review. This means that in most cases, the reviewer must issue a decision within 72 hours, though some may take longer.
  7. You Get Notified
    You’ll be notified of the outcome via portal message, email, or phone, as well as receiving a mailed copy of the decision.

If it’s approved? The decision is binding – and CVS must cover your Zepbound.

Key Questions – Answered

What is a second-level appeal?

It’s your right to request another review when your first appeal is denied—either internally by the insurer or externally by an independent reviewer. We choose the path most likely to win for you.

Why is Claimable offering free 2nd-level appeals?

With these early Zepbound appeals, we’ve seen a clear pattern of “cookie-cutter” denials that violate the full-fair-and-individualized-review requirement. To level the playing field, we’re offering these escalations free of charge to demand unbiased consideration.

Keep in mind, this only applies if you submitted your first-level appeal through Claimable. If you've appealed a different way and think you might need a second-level appeal, feel free to email us for help navigating the process.

What’s included in my Claimable second-level appeal?

A freshly drafted appeal letter with expert legal commentary, your first appeal materials, and previous denial letters—packaged to maximize your chance of success.

Is there any cost to second level appeals?

Nope – this service is completely free for CVS Caremark Zepbound forced-switch cases. Claimable’s appeal strategy is customized for each insurer and medication—and in these cases, supporting a second-level appeal is part of our core approach to winning.

What do I need to submit a second-level appeal?

You’ll need your appeal denial letter to confirm the instructions for submitting a second-level appeal, including where to send it and whether any forms are required.

If you’ve received your claim file and designated record set since initially submitting, we recommend uploading them when prompted (after you review your second-level appeal draft).

How do I track my appeal’s status?

If you haven’t heard back within 72 hours, call the number on your insurance card. Otherwise, we’ll notify you as soon as the reviewer issues a decision.

Do I have to redo the appeal questionnaire?

Never. All your first-level answers and uploads carry over automatically.

We know the appeals process can feel confusing and overwhelming. That’s why we built Claimable — to guide you every step of the way. With our new second-level appeal support, you can rest assured that we’ll fight tirelessly to get you the coverage you deserve.

Questions? We’re here for you. Reach out to support anytime.

Why was my migraine treatment denied? Common insurance denial reasons – and how to fight back.
While the science in treating migraine has advanced, insurance coverage hasn't kept up. Patients are still being denied access due to outdated policies, arbitrary formulary changes, and one-size-fits-all coverage rules. When that happens, we fight back.
Insurance denied coverage for Emgality, Aimovig, Nurtec or another migraine medication? Here's what you can do to get covered.

The past few years have brought major progress in how we prevent and manage migraine. CGRP-targeting medications like Aimovig, Emgality, Vyepti, Nurtec ODT, and Qulipta represent a shift in both the science and strategy of treating this condition.

They're often better tolerated and more effective than older medications, and they allow for more personalized care, whether that means a daily pill, a monthly injection, or a quarterly infusion.

But while the science has advanced, insurance coverage hasn’t kept up. Patients are still being denied access to these medications due to outdated policies, arbitrary formulary changes, and one-size-fits-all coverage rules. At Claimable, we’re working with patients, providers, and advocacy partners to challenge these barriers—and win.

If you’re facing a denied claim for a migraine medication, read on to understand the tactics insurance companies take to limit access to these treatments – and what you can do to get covered.

Understanding the migraine treatment landscape

As a migraine sufferer, I know that migraines are more than a bad headache. It’s a disabling neurological disease that affects over 40 million people in the U.S. and is a leading cause of missed work and reduced quality of life.

CGRP (calcitonin gene-related peptide) medications have transformed our ability to treat and prevent migraine. Unlike older medications developed for other conditions (like epilepsy or depression), CGRP drugs are designed specifically for migraine. They target the biological mechanisms believed to drive attacks, offering relief with fewer side effects.

Why migraine coverage is so challenging

Even though these medications are FDA-approved and supported by professional guidelines, insurance plans often:

  • Require you to fail older, less effective drugs first
  • Only cover one CGRP drug despite clinical differences
  • Force patients to switch medications mid-year due to rebate deals
  • Approve treatment only temporarily, requiring re-authorization every few months
  • Use vague or bureaucratic reasons to deny access altogether

This system doesn’t reflect the complexity of migraine or the individual needs of patients. It reflects cost-saving tactics that delay care.

Common migraine insurance denial reasons – and how we fight them

Step Therapy Requirements

What it is: Insurance insists you try and fail older medications (like triptans, topiramate or amitriptyline) before approving CGRP drugs.

Why it’s wrong: These older medications often come with tough side effects and weren’t designed for migraine. The American Headache Society supports CGRP drugs as a first-line option.

How we fight it: We submit detailed appeals outlining your treatment history, side effects from older meds, and professional guidelines that justify bypassing step therapy.

Formulary exclusions

What it is: Only one CGRP medication is covered. All others are denied.

Why it’s wrong: CGRP drugs aren’t interchangeable. A daily pill may work better for one person than a monthly injection. Side effects and effectiveness vary.

How we fight it: We explain the medical rationale for your chosen medication, using provider notes and evidence that shows why it’s not just a preference—it’s a necessity.

Mid-Year medication switching

What it is: Your plan changes coverage mid-year due to PBM rebate deals, forcing you to switch medications from a medication you’re stable on to what they prefer.

Why it’s wrong: Migraine treatment relies on consistency. Switching meds can cause rebound attacks and destabilize your care.

How we fight it: We focus on treatment stability and cite ERISA protections (if applicable) to challenge the fairness of mid-year changes.

Short-term or conditional approvals

What it is: You get approved for 30 or 60 days at a time, with constant re-authorization requirements.

Why it’s wrong: Migraine is chronic. Short-term approvals create anxiety, disrupt care, and burden providers.

How we fight it: We argue for long-term approval based on your condition and medication response, using both legal framing and clinical support.

"Not medically necessary" determinations

What it is: Your insurer denies a medication without a clear reason, claiming it’s not necessary.

Why it’s wrong: This ignores your provider’s judgment and contradicts clinical guidelines.

How we fight it: We present peer-reviewed studies, your provider’s rationale, and documentation showing how the treatment improves your quality of life.

Administrative or documentation barriers

What it is: Missing forms, technicalities, or unclear instructions result in denials.

Why it’s wrong: The insurer is making medical decisions by burying you in paperwork. Most people give up and concede to insurance demands. It’s generally understood that patients who accept non-medical switches have adverse side effects and poorer outcomes

How we fight it: We ensure everything is submitted cleanly and correctly, with language that anticipates common administrative objections.

How Claimable builds strong migraine appeals

As a patient, you have the right to challenge these denied claims. Insurers are required to comply with state and federal laws – which often require their denial rationale to be based on medical necessity, FDA standards, and other clinical, legal, and policy standards.

That means a strong appeal should include clinical evidence, legal standards, and policy compliance to hold insurance accountable to deliver your care and coverage. At Claimable, we use a multi-layered approach:

  • Personal narrative: We capture your history, prior treatments, and how migraine affects your life. In particular this could be how you’re not able to enjoy your hobbies or do basic things like drive safely at night. We hear of patients becoming socially isolated. 
  • Clinical evidence: We include the latest guidelines, studies, and medication-specific data. This includes the guidance from the American Headache Society, and other peer-reviewed studies and randomized controlled trials proving these medications are right for you. 
  • Legal leverage: We reference plan terms, medical necessity requirements, and ERISA protections. This helps reinforce your rights to have a full and fair review of your care. An insurance doctor who has never met you shouldn’t get to make the call. 
  • Collaborative advocacy: Your primary care doctor or neurologist can refer you for an appeal if they have a denial, or you can simply add their letter of medical necessity to your appeal to increase its strength.

Why this work matters – unlocking migraine coverage

The medications now available can change lives. But they only work if you can access and stay on them. No one should be forced to suffer just because their insurer hasn’t updated its playbook.

At Claimable, we don’t just file paperwork. We build appeals that reflect who you are, what you’ve been through, and why your treatment plan matters. If your migraine medication has been denied, disrupted, or downgraded, we’ll help you fight back—with precision, evidence, and persistence. Your journey matters to us.

Facing an insurance denial for Aimovig, Emgality, Nurtec or other migraine medication?

We’re here to help. Let’s make the system work for you—not against you.

Get started on your migraine appeal today.

Caremark appeals: What those Zepbound denial letters really mean
Got a Zepbound denial letter? Let's break down what's inside these, and why we think it won't hold up to courts or regulators.

The first responses to Zepbound appeals for the CVS Caremark forced switch have started to come in. Claimable COO Alicia Graham breaks down what's in these new denial letters, and what that means next.

If you've gotten one of these letters, know that we're going to keep fighting it. We don't believe this rationale is based on medical necessity, nor that it will hold up to a secondary review. We're actively escalating these appeals, because we believe that you will win.

This thing is getting more ridiculous by the day. As we start to see responses come back to CVS Caremark, I wanted to share what we've been seeing – because frankly, a lot of what they’ve said so far is vague, misleading and even straight up false. I don't believe these denials are in compliance with the plan policy, applicable laws, or clinical standards of care at all, and we're going to break down why that Is.

This is my take on exactly what’s in these denial letters, what it actually means, and what you can do if you got one. I know how confusing this is, and I hope this can help anyone navigating it.

The one size fits all “coverage request was not approved” denial letter

Some of the denial letters we're seeing. Notice something? They all say the same thing.

First of all, this is the language we’re seeing in almost all of these letters – just copy-pasted for everyone. By law, each appeal needs to be reviewed by a qualified human performing a full and fair review of specific case facts… so straight off the bat, it doesn’t look like they’re doing that.

“Your appeal for Zepbound has been determined as not medically necessary”

They say that current medical literature doesn’t support the use of Zepbound over the available formulary alternatives. Except it does (here's the head-to-head study we’ve been including in our appeals). They conveniently don’t include the studies they use to make their decision, which they’re supposed to do… so we have no idea why they ignored it and what they are using instead.

Plus, they’re saying Zepbound isn’t medically necessary, but Wegovy and Mounjaro are?! I don’t understand how that argument could ever stand up in a court. Wegovy is indicated for the same treatment with same coverage criteria, and Mounjaro... isn’t even indicated for weight loss.

“The primary covered drug for your plan is Wegovy”

“If the patient is unable to take the primary covered drug, chart notes must be submitted to CVS Health”. What they’re saying here is if you fail Wegovy, you could get back on Zepbound. This is step therapy, but in lots of states there are laws against this. If you live in New York, for example, they cannot require you to have previously failed Wegovy – but we’re seeing them do it anyway.

If you live in New York and got this, you should definitely fight it.

“The secondary covered drug for your plan is a tirzepatide product [Brand Mounjaro]”

This is a curveball – not what we expected to see. Yes, Mounjaro is a tirzepatide like Zepbound, but per the FDA it is only approved for type 2 diabetes.

If you and your doctor agree on you taking Mounjaro off-label, great! That’s completely up to you and what’s best for your care. But for your insurer to try to force you onto an off-label indication? Unethical, clinically absurd, and probably illegal.

But even more importantly this smells like a trap to me.

The trap: “Formulary alternatives may still require a clinical prior authorization”

They’re saying that Mounjaro may still require a PA. We’ve seen this before, so I want patients and providers to clearly understand the risk of going down this path.

The PA form states you do not qualify for Mounjaro unless you have type 2 diabetes, so the minute they ask for a PA your Mounjaro coverage will be gone. Even if they approve you without a PA today, at any time they can come back ask for it which will kick you off.

This has happened to several patients we’ve worked with who took Mounjaro for months and then were told they don’t qualify. They can force you off at any time because the criteria for Mounjaro is different.

The trap within the trap: The 180 day appeal window

I think a big part of them trying to lure you into doing Wegovy or Mounjaro is that by law, you only have 180 days to appeal your Zepbound denial. Hypothetically they could cover Mounjaro for those 180 days, and then on day 181 when that window expires and you’ve lost your right to fight for Zepbound, revoke your approval for Mounjaro – leaving you with nothing.

Even if you want to try Wegovy or Mounjaro, I would keep going on your Zepbound appeal at the same time. If you win a Zepbound appeal, they can’t just take it away.

Robocalls, app messages, and other nonsense

Legally, they have to send you a formal letter with details, full appeal rights, and more. But instead, they’re sending these mini-messages ahead of time and telling you to wait for the letter.

Why? Because not having all the info makes your response weaker and slows things down. Make sure you request your full claim file, formal denial letter, drug policy and all other decision documents. You’re legally entitled to them.

The bottom line: You don’t have to let them win

The TLDR; these denials don’t pass my smell test for compliance with the plan policy, applicable laws, or clinical standards of care. I don’t think these will hold up in external review, courts, or with regulators. So I say keep fighting.

If you got one of these, first request all the documents. Then, escalate it. In your denial letter there will be a number/address for the external reviewer to send it to. **You have the right for an external review and I think that if you do you will win.

At my company this is exactly what we’re doing. We’re creating secondary appeals that address every single piece of BS in these letters and escalating them to reviewers and regulators. Because PBMs and insurers are watching this – and the last thing I want is to show them that pulling stuff like this is ok. It’s not, and we’re going to fight it. And win.

– Alicia

PS – if you only have the “a change is coming on July 1” letter

I’ve seen a lot of people try to appeal using these letters – this will not work. This letter is not a denial of coverage for Zepbound. All this tells you that they will deny it if coverage is requested after July 1, but you can’t appeal based on this.

If you’ve only gotten this letter and want to try to stay on Zepbound, you need to get denied first. That means:

  1. Your provider needs to submit a new prior authorization request for Zepbound (form here)
    1. It’s best to do this with a LOMN attached (template here, Lilly has one also)
  2. You wait until that prior authorization gets denied
  3. Then you can appeal

Denials, formulary change notices, and more: What your Zepbound switch letters mean, and what to do next.
CVS Caremark denied Zepbound? Here are the documents you might get – and which ones you need to have to fight the switch.
Getting a lot of letters? We know it's confusing. Let's break it down.

If you’re one of the many patients impacted by the forced switch from Zepbound to Wegovy, you’ve probably received a confusing series of letters and messages – some from CVS Caremark, some from your doctor, and maybe even some from your pharmacy. Understanding what each document means is key to getting back on the path to coverage.

This article breaks down the three critical documents you’ve likely received through the process. We’ll show you what they are, what they mean, and – most importantly – how to use them to get covered again.

👉 If you haven’t already, check out our full guide to fighting the Zepbound switch here.

Document 1: The Formulary Change Notice Letter

Many patients began receiving these letters in May, notifying of an "upcoming change to your medication coverage".

What it is:

A notification of an upcoming change to your coverage. This letter tells you that soon, a change to formulary or drug policy will remove Zepbound and prefer Wegovy. It lays out steps to prepare, such as when to file a new prior authorization (for most people, after July 1st) and how to switch your prescription.

Why you get it:

Health insurers and pharmacy benefit managers, like CVS Caremark, must provide 60 days’ advance notice to plan participants before any mid-year formulary change that removes a drug from coverage or limits its availability (e.g. adds step therapy, prior authorization, or tiering).

How to read it:

The truth? There’s not a lot in here. These letters often use vague language like “no longer be covered” and “you’ll need to pay the full cost”, but don’t provide specifics. That’s because, importantly, this is not a denial, which is required to provide you much more detail. 

Key takeaway:

This letter alone does not mean that your Zepbound prescription has been denied, or trigger your right to appeal. It’s a heads-up, not a final decision.

What's inside a formulary change notice letter.

Document 2: Your Doctor’s New Prior Authorization Form

This form asks about your history and helps prove why the treatment is medically necessary for you.

What it is:

A prior authorization is a form your doctor submits ahead of prescribing something, so the insurer can sign off on your treatment before it gets prescribed. With the Caremark switch, even if you had a prior authorization (PA) approved for Zepbound, your doctor must submit a new one after July 1. This is the PA form they must submit, and we also recommend they draft a letter of medical necessity.

Why it’s necessary:

Because Caremark’s formulary changed, all existing PA approvals under the old formulary are essentially wiped out. Your provider needs to justify, again, that the treatment is medically necessary and follows standard guidelines. If this feels like a huge waste of time, providers agree: PA has been proven to delay care and harm patients, and it’s costly for providers to complete.

How to use it:

Ask your doctor if a new PA has been submitted. This is your official request for your insurance to cover Zepbound, and it needs to be on record after July 1 for the appeals process to work. For best results, have them include a letter of medical necessity (you’ll also want this ready for your appeal). A little appreciation goes a long way.

Key takeaway:

An official denial won’t come until a new PA is submitted. This form restarts the process.

Document 3: The Denial Letter (Now You Can Appeal)

You'll see language like "Request for coverage has been denied" in this letter.

What it is:

This is the official decision from your insurer rejecting the PA request for Zepbound. It typically arrives by mail or through your health plan portal.

Why you get it:

Insurers and PBMs (like CVS Caremark) are legally required to ensure you understand the reason for a coverage denial and have a meaningful opportunity to appeal. When denial language is vague, incomplete, or misleading, it undermines this legal purpose and obstructs fair access to care – and if that happens, we can help you fight it.

How to read it:

Look for the specific denial rationale and appeal instructions. You might see language like “the primary covered drug for your plan is Wegovy” or “another option for you is a tirzepatide product.” 

This language is misleading: You always have the right to request a formulary exception when no equivalent alternative exists. Zepbound is the only FDA-approved tirzepatide for obesity and sleep apnea, and has also been proven to be more effective, with fewer side effects, than Wegovy. Thus, it is the only tirzepatide product that should be covered by your plan.

What we think? This gives you a strong case to stay on Zepbound in your appeal.

Key takeaway:

This denial is what makes you eligible to file an appeal. If you haven’t gotten this yet, first make sure the PA has been submitted. If you appeal before you get this denial, it may be rejected or ignored – but don’t worry if this happens. You can resubmit.

What's inside an official denial letter. You may also get a notification inside of your insurance app or portal stating "the coverage request was denied", with the full letter to follow in the mail.

Putting It All Together

A successful Zepbound appeal means getting the documents right:

1. The 60-day notice tells you this is coming, but isn’t a denial.

2. Your doctor’s new PA starts the process under the new rules.

3. Your denial letter gives you the right to appeal.

👉 If you’ve received your denial letter and are ready to appeal, Claimable can help you fight back in minutes. Get started today.

Need Help?

Still confused? You’re not alone. These documents weren’t designed for patients. That’s why Claimable exists – to help you translate legal jargon into action. Reach out at support@getclaimable.com.

Why You Should Appeal Your Insurance Denial Yourself — Not Just Leave It to Your Doctor
A guide to understanding the different appeal options – and why you should be submitting it yourself.

When your insurance denies coverage for something your doctor says you need, it can feel like hitting a wall. The treatment is medically necessary. Your provider agrees. And somehow, your insurer still says “no.”

At that point, most people do the same thing: they call their doctor’s office and ask them to help. That makes sense – most patients haven’t had to appeal an insurance decision before, and assume that since the prescription came from their doctor, so should the appeal to cover it.

But here’s what most people don’t know: health insurance appeals aren’t just medical arguments. They’re regulatory, contractual, and strategic. They require paperwork, persistence, and the ability to challenge a policy – not just explain a diagnosis. 

Saying the quiet part out loud: your doctor’s appeal isn’t always enough. Sometimes, it’s not even the best place to start. That’s why if you want the best shot at getting coverage approved, you should appeal it yourself.

What’s the difference between my appeal and one that comes from my doctor?

A basic overview of patient vs. provider appeals

When your insurer denies a medication, treatment, or service, there are two types of appeals that can be submitted:

  • A provider appeal is when your doctor or their billing team contacts your insurer to argue that the treatment is medically necessary. These usually happen through the insurer’s internal system and often involve submitting clinical documentation.
  • A patient appeal is when you, the person covered by the plan, formally challenge the denial. This taps into patient and consumer protections, and gives you access to additional tools, like independent reviews and mandated timelines and processes.

They may sound similar, but they vary. How are these types of appeals different?

Patient Appeal Provider Appeal
Who submits it You, the patient, or an authorized representative Your provider or their team.
Who prepares it You partner with your doctor to get relevant documents from them, like a letter of medical necessity. Then, you can add other arguments into the appeal. Your provider, or their team, will put together an appeal stating why the treatment is necessary for you.
What’s in the appeal Broad arguments, including relevant laws, policy standards and compliance, clinical evidence, and your personal story – all advocating for your care. Typically contains clinical evidence and medical justification.
Response timelines Insurers are required to respond in a timely manner: 30 days for standard cases, 15 days for prior auth, and 72 hours for urgent appeals (incl. formulary exception requests). While there are regulatory statutes that dictate response, we’ve seen insurers blow right through them, as there is little a Provider (who is contracted by them) can do.
Escalation rights Patient appeals have more legal rights, including multiple levels and appeal and the right to escalate to an independent reviewer. Depending on the insurer’s policies, providers can appeal more than once – but don’t have the same legal protections.

Now you can see some of the strengths that come from choosing to appeal yourself, as a patient – but it might still seem scary to take on. Apprehension about appeals isn’t an accident – insurers have spent years trying to make this seem hard, so people don’t do it. 

Common misconceptions about insurance appeals – and what they get wrong.

If you’ve never appealed an insurance denial before, you’re not alone (and you’re not behind). Most people don’t learn how this works until they have to.

This is often made harder by the assumptions people make about appeals. Here’s three of the most common misconceptions—and the truth about what actually works when you’re fighting a denial.

Misconception #1: “My doctor will take care of it.”

We hear this all the time. You get denied, and your first call is to your doctor to ask what to do. After all, they prescribed the treatment – surely it’s up to them to explain why you need it covered, right?

Why this doesn’t work:

Your doctor can support an appeal, but they’re not insurance policy experts – and more importantly, they’re not the one whose plan is in question here. Their top priority is to care for their patients, and they have limited options and resources to address the rising denial volume.

The reality:

You, the patient, hold the contract. The job of an appeal is to prove a denied treatment or service was contractually obligated to be paid for. This is equal parts a patient and consumer protection issue.

Misconception #2: “I don’t know how to do this — I’ll mess it up.”

It makes sense to feel this way – the healthcare system is overwhelming, and insurance is confusing on purpose. They want you to give up. That means that if you’ve never appealed before, it can feel like you’re not qualified to try.

Why this doesn’t work:

Assuming you’re not capable leads to inaction while you search for someone else to do it. Lawyers are expensive and don’t take many cases. Doctors don’t have the time, resources or rights to escalate appeals. And every time an unjust denial goes unchallenged, insurers are emboldened to deny more medically necessary care.

The reality:

Not long ago, it felt impossible to make this case on your own. Not anymore. With tools like Claimable, all you have to do is share your story and answer a few easy, guided questions. Then, we’ll pull all of the right laws, policies, and studies to make you the strongest appeal.

Misconception #3: “Its pointless — If they denied me, it must not be covered.”

This is what insurance companies want you to believe. That a denial is final, that you’re out of options, and that fighting back is too complicated or hopeless to be worth it.

Why this doesn’t work:

It causes people to give up on treatment they need, or to pay out-of-pocket for something their insurance might have covered – if only they had pushed back.

The reality:

Insurance companies deny coverage in error all the time – either due to mistakes or misconduct. Appealing is a built-in protection from a broken system. In fact, more than half of denials are overturned on appeal – and you have the power to take them on.

Why you should lead your own appeal

The best person to advocate for your care is you. Here’s why:

You hold the contract (and the legal rights that go with it)

Your doctor is there to care for you — but you’re the one who has a legal agreement with your insurance company. That gives you rights your doctor doesn’t have on their own, including state and federal protections.

When you appeal directly, you can:

  • Trigger faster, legally mandated response times (like 72 hours for urgent cases)
  • Escalate to external reviewers or regulatory agencies – including the ability to file complaints with your state’s insurance board
  • Demand a full, fair review based on your policy’s language

You can move faster

When providers appeal, the paperwork often gets routed through internal insurer systems that are slow, opaque, and hard to track. Appeals can get stuck in “processing” or lost altogether.

When you appeal yourself, you’re in control. You don’t have to wait for office staff to call the insurer back or follow up on a fax. You set the pace – and you can hold your insurer accountable for timely responses.

You can make a stronger, more complete case.

Provider appeals are almost always focused only on clinical information. But winning an appeal often requires:

  • Legal or regulatory arguments
  • Citing FDA standards or policy precedent
  • Personal impact statements about how the denial is affecting your life

Your doctor isn’t trained in insurance law. And they shouldn’t have to be. By appealing yourself — especially with help from a tool like Claimable — you can bring all these elements together into a comprehensive case that’s much harder to ignore.

You care the most – and in your appeal, that shows

Your doctor has hundreds of patients, dozens of responsibilities, and limited time. Appeals are just one more administrative burden in a broken system.

But for you, this appeal matters. It’s your treatment, your time, your health. That motivation — paired with the right tools — is what makes you the most effective person to lead the charge.

Why doctors don’t always win appeals (and that’s ok)

When you bring a denial to your doctor, they do what they can. A good provider is invested in your care, and they want to help get you the treatment they’ve prescribed. But the truth is: most provider-led appeals are brief, clinical, and limited in how far they can go. 

Why? Doctors have no power over the insurance company. They don’t hold an insurance contract (like you do). And the system is set up to make it all too easy for the insurer just to say no all over again.

Here’s how provider appeals typically go:

  • First, they write a letter of medical necessity and send it over.
  • Once insurance denies it again, your provider has a “peer-to-peer review” with a doctor who works for the insurance company. The reality? The job of the peer reviewer is to explain to your doctor why the insurer isn’t going to pay for it.
  • And that might be it – they’ve reached the end of the road on this appeal.

That’s not their failure – it’s just a reflection of the system. Doctors aren’t trained or resourced to fight complex coverage decisions. That’s not what they went to med school for. They’re here to take care of you. The rest is up to you – and tools like Claimable.

How to work with your doctor – while staying in the drivers’ seat on your care

Appealing yourself doesn’t mean doing everything alone. Think of it like this: you’re the quarterback, and your provider is your key teammate.

When you get denied, here’s how to work with your doctor on your appeal.

  1. Loop them in: Let their office know that your medication or service was denied, and that you plan to submit your own appeal. Most will be supportive — and sometimes relieved — that you’re taking the lead. Try this: 
  2. “I’m planning to appeal my denial directly, since I can escalate it beyond internal review. Would you be willing to support the appeal with a letter or documentation showing this treatment is medically necessary?”
  3. Ask for what they do best: Medical support. You don’t need them to write a legal brief – just a solid medical explanation. Request:
    • A Letter of Medical Necessity (try our LOMN template to make it easy!)
    • Diagnosis codes and chart notes\
    • Any history of treatments that didn’t work
  4. Keep communication clear and focused. No need to forward your entire appeal draft. Instead:
    • Summarize what you’re submitting
    • Make 1–2 specific asks
    • Respect their time — they’ll appreciate it
  5. Follow up and share your success: Let your provider know the outcome of the appeal. It helps close the loop and might even help future patients.

The easiest, most effective way to do your appeal

By now, we hope you see the value in taking charge of your appeal – and your care – directly. But researching all of the laws, policies, and . Luckily, you don’t need to be an insurance expert to write a winning appeal. That’s exactly what we built Claimable to do.

Here’s how it works:

  • You answer a short set of questions about your medical and personal history
  • You provide key documents, like your doctor’s letter of medical necessity
  • We incorporate legal precedent, policy, and clinical standards
  • We create a strong, customized appeal with the best arguments
  • You approve – and we automatically sent it to your insurer and other key recipients

It’s that easy. In minutes – not days – you can build a case and fight back against your denial. And win.

The bottom line: You’re the best person to fight for your care

Your doctor is here to care for you. Your insurer is here to protect their business. And you? You’re the one who has the most to gain – or lose – from this decision.

Insurance companies count on confusion. On delays. On patients giving up. But you don’t have to play by those rules.

By appealing directly – and using every right the law gives you – you give yourself the best chance at getting the care you need. With your doctor on your side and Claimable in your corner, you’re not just filing an appeal. You’re creating a case that’s built to win.

You have the right. You have the tools. You’ve got this.

Start your appeal today →

Let's get you covered.

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