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Lynch Syndrome: when insurers say no, reviewers often say yes

In 15 published external-review decisions involving lynch syndrome, independent physician reviewers overturned the insurer’s denial 66.7% of the time.

Published decisions
15
2001–2026
Overturned
66.7%
10 denials reversed

What the insurer actually argued

Denials fall into different categories, and they don’t succeed equally — so the reason on your letter changes how you should answer it.
Reason givenDecisionsOverturned
Experimental/Investigational
The plan called the treatment unproven. These turn on published evidence, so the appeal is a literature argument.
11
54.5%
Medical Necessity
The plan said the care wasn’t medically necessary. The most common fight, and the most winnable.
4
100%
Typical time to a decision
18 days
Most land between 15 and 21 days
Handled as urgent
6.7%
Expedited when a delay would cause harm
What the reviewers wrote
Excerpts from the independent reviewers’ published findings — the actual reasoning, quoted, not summarised.

Where the denial was overturned

Nature of Statutory Criteria/Case Summary: An enrollee has requested reimbursement for genetic testing (CPT 81295 MSH2 gene full seq; CPT 81292 1 MLH1 gene full seq; CPT 81300 MSH6 gene dup/delete variant; CPT 81317 PMS2 gene full seq analysis; CPT 81403 MOPATH procedure level 4). Colorectal cancer can occur in patients with hereditary predisposition to cancer such as Lynch syndrome or hereditary nonpolyposis colorectal cancer (HNPCC). Sharaf and colleagues report that genetic testing appears to be underutilized by first-degree relatives of patients with Lynch syndrome. Sinicrope notes that it is critical to recognize inherited syndromes that are associated with colorectal cancer, of which the Lynch syndrome is the most common.
Experimental/Investigational · 2022 · IMR EI22-36814
Nature of Statutory Criteria/Case Summary: An enrollee has requested reimbursement for the genetic screening (MyRisk) for evaluation of the enrollee’s risk of cancer.Findings: The physician reviewer found that the genetic screening (MyRisk) was likely to be more beneficial for evaluation of the patient’s medical condition than any available standard therapy. The MyRisk panel testing is considered a standard of care for patients in this clinical setting. The patient’s father appears to be unavailable for testing and had colon cancer and a brain tumor younger than age 50 increasing the patient’s risk of Lynch syndrome. The MyRisk panel detects disease-causing mutations in the MLH1, MSH2, EPCAM, MSH6, PMS2 and MYH genes that are responsible for the majority of Lynch syndrome and MYH-associated polyposis (MAP) cases.
Experimental/Investigational · 2017 · IMR EI17-26466

Where the denial was upheld

Worth reading too — these show what an appeal has to overcome.
Nature of Statutory Criteria/Case Summary: An enrollee has requested Familial Adenomatous Polyposis (FAP) and/or Lynch Syndrome gene testing for evaluation of her medical condition. Findings: Two physician reviewers found that the requested FAP and Lynch Syndrome gene testing is not likely to be more effective for this patient than other available options. This patient does not meet the definition of high risk colorectal cancer syndromes according to the National Comprehensive Cancer Network (NCCN) guidelines. She also does not meet Amsterdam or Bethesda criteria. Thus, the requested gene testing is not likely to be more beneficial than her current standard therapy of increased surveillance with colonoscopy.
Experimental/Investigational · 2016 · IMR EI16-22230
The enrollee requested reimbursement for Lynch Syndrome genetic analysis testing. The enrollee has a medical history of Lynch syndrome. The genetic counselor determined the enrollee’s personal and family history is suggestive of a predisposition hereditary cancer. The report confirmed the enrollee was positive for a mutation, which is consistent with a diagnosis of hereditary non-polyposis colorectal cancer, also known as Lynch syndrome. The genetic cause of the illnesses affecting the enrollee and his family members was already known, based on results of prior testing. The new test only confirmed the results of the prior test.
Experimental/Investigational · 2020 · IMR EI20-32445

Figures and quotations on this page come from 42,749 published decisions in the California DMHC Independent Medical Review dataset. These are California outcomes — every state runs an equivalent external review, but the rates here are California’s. Excerpts are quoted verbatim from the public record and describe this condition generally, not any individual case.

How to use this in your appeal

These outcomes come from California’s external review program — an independent physician panel whose decision binds the insurer. Every state has an equivalent, and internal appeals succeed even more often. If your care for lynch syndrome was denied, the published record says the denial is worth fighting.

SOURCE: CALIFORNIA DMHC INDEPENDENT MEDICAL REVIEW OUTCOMES (CHHS OPEN DATA) · DERIVED AGGREGATE STATISTICS ONLY · METHODOLOGY

Not legal or medical advice. Coverage Rights is a self-help tool that helps you prepare your own appeal. For advice about your specific situation, talk to a licensed attorney or your doctor.

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