Ehlers-danlos Syndrome denials in California external review
In the California DMHC record, independent physician reviewers decided 32 published external-review cases involving ehlers-danlos syndromeand overturned the plan’s denial in 68.8%. That is a historical result among cases that reached this program, not a forecast for an individual appeal.
What the insurer actually argued
| Reason given | Decisions | Overturned |
|---|---|---|
Medical Necessity The plan said the care wasn’t medically necessary. The most common fight, and the most winnable. | 27 | 66.7% |
Experimental/Investigational The plan called the treatment unproven. These turn on published evidence, so the appeal is a literature argument. | 5 | 80% |
What the reviewers wrote
Where the denial was overturned
Findings: The physician reviewer found that Nature of Statutory Criteria/Case Summary: The patient has requested reimbursement for electromyography (EMG). The records indicate that the patient presents with a history of Ehlers-Danlos syndrome, migraine headache, and cervical dystonia. A record review showed that the patient complains of neck pain radiating to the left arm with numbness and tingling in the left more than the right arm. The patient indicated that she was injured by a dog, and started having weakness, numbness, and tingling sensation in the left arm thereafter. The provider noted that the patient’s presentation was consistent with sciatica and tarsal tunnel syndrome of both lower extremities.
Nature of Statutory Criteria/Case Summary: The patient has requested authorization and coverage for placement of a port catheter for central venous access. A significant proportion of patients with postural orthostatic tachycardia syndrome (POTS) require non-oral nutrition and/or hydration, especially those presenting with nausea and vomiting, as is the case with this patient. Patients with POTS may also have several gastrointestinal symptoms, especially those with connective tissue diseases such as Ehlers-Danlos syndrome (EDS), which this patient has also been diagnosed with. Parenteral nutrition and hydration may be indicated in patients with POTS when there is nausea and vomiting. Parenteral nutrition is appropriate in patients with malnutrition who are unable to maintain nutritional status despite enteral means, or who are not able to be fed orally or enterally for various reasons.
Where the denial was upheld
Nature of Statutory Criteria/Case Summary: An enrollee has requested authorization and coverage for IVIG therapy.The submitted clinical documentation does not support that IVIG therapy is medically necessary for the patient. There are no visit notes demonstrating how diagnoses of mast cell activation syndrome (MCAS), Ehlers-Danlos syndrome or postural hypotension syndrome (POTS) were made. All of the patient’s submitted mast cell studies were normal and the records fail to demonstrate evidence of mast cell activation syndrome.
Nature of Statutory Criteria/Case Summary: The patient has requested authorization and coverage for (1) hydrocodone 10 mg, four times a day, or (2) hydrocodone 10 mg, three times a day. Findings: The physician reviewer found that when to initiate or continue opioids for chronic pain, Dowell and colleagues report, “Nonpharmacologic therapy and nonopioid pharmacologic therapy are preferred for chronic pain. Clinicians should consider opioid therapy only if expected benefits for both pain and function are anticipated to outweigh risks to the patient.
Figures and quotations on this page come from 42,749 published decisions in the California DMHC Independent Medical Review dataset. These are California external-review outcomes. Other state and federal programs have different eligibility rules, processes, and current availability; the rates here do not transfer to those programs or predict an individual result. Excerpts are quoted verbatim from the public record and describe this condition generally, not any individual case.
These outcomes describe eligible cases completed through California DMHC’s Independent Medical Review program. They do not estimate the chance that an internal appeal, an external review in another jurisdiction, or your individual case will succeed. Use the record to identify evidence patterns involving ehlers-danlos syndrome, then check the rights and deadlines that apply to your plan.
SOURCE: CALIFORNIA DMHC INDEPENDENT MEDICAL REVIEW OUTCOMES (CHHS OPEN DATA) · AGGREGATES + DEIDENTIFIED DECISION EXCERPTS/REFERENCE IDS · METHODOLOGY