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.
What the insurer actually argued
| Reason given | Decisions | Overturned |
|---|---|---|
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% |
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.
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.
Where the denial was upheld
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.
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.
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.
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