ALS denials in California external review

In the California DMHC record, independent physician reviewers decided 46 published external-review cases involving ALSand overturned the plan’s denial in 63%. That is a historical result among cases that reached this program, not a forecast for an individual appeal.

California DMHC decisions
46
2002–2025
Overturned
63%
29 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
Medical Necessity
The plan said the care wasn’t medically necessary. The most common fight, and the most winnable.
32
68.8%
Experimental/Investigational
The plan called the treatment unproven. These turn on published evidence, so the appeal is a literature argument.
14
50%
Typical time to a decision
7 days
Most land between 3 and 19 days
Handled as urgent
69.6%
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 joint manipulation under anesthesia. Catalano and colleagues noted, “The stiff digit may be a consequence of trauma or surgery to the hand and fingers and can markedly affect a patient’s level of function and quality of life. Stiffness and contractures may be caused by one or a combination of factors, including joint, intrinsic, extensor, and flexor tendon pathology, and the patient’s individual biology. A thorough understanding of the anatomy, function, and relationship of these structures on finger joint range of motion is crucial for interpreting physical examination findings and preoperative planning.
Experimental/Investigational · 2021 · IMR EI21-35771
Findings: The physician reviewer found that Nature of Statutory Criteria/Case Summary: The patient requested authorization and coverage for Relyvrio and/or Radicava.ALS is a motor neuron degeneration disease primarily in the motor cortex and spinal cord that leads to progressive muscle weakness. The patient in this case has been diagnosed with ALS since June 2023 with the onset of symptoms in February 2021. As noted by government studies in their approval, Relyvrio and Radicava have been demonstrated to be safe and effective medications for the treatment of patients with ALS. These two medications are accepted as the two of three disease-modifying treatments for ALS. In addition, the current medical literature has provided support for Relyvrio and Radicava in the slowing of clinical deterioration in patients with ALS.
Medical Necessity · 2023 · IMR MN23-40281

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 authorization and coverage for Radicava (Edaravone Injection). The Health Plan has denied this request indicating that the requested medication is not medically necessary for treatment of the enrollee’s amyotrophic lateral sclerosis (ALS). At issue in this case is whether the requested medication Radicava (Edaravone Injection) is medically necessary for treatment of the enrollee’s medical condition.Amyotrophic lateral sclerosis is a progressive neurological disease that causes degeneration of muscles and leads to weakness with significant morbidity and mortality. The characteristics of the disease have a combination of lower motor neurological problems with upper motor neurological problems. Survival is poor with a median time of three to five years. Edaravone works on free radicals.
Medical Necessity · 2018 · IMR MN18-29850
Nature of Statutory Criteria/ Case Summary: The enrollee requested authorization and coverage for Functional Electric Stimulation Cycle Rehabilitation System (FES). The enrollee has spastic cerebral palsy. He was an active individual who was able to ambulate, work, and remain independent. He was diagnosed with C4 amyotrophic lateral sclerosis (ALS) cervical tetraplegia due to transverse myelitis. The enrollee has lost volitional motor function below C4 in his bilateral upper and lower extremities. His light touch sensation and proprioception is absent bilaterally below C4. The enrollee utilizes a standing frame weekly to maintain leg and trunk flexibility. He requires an alternative form of activity therapy since he cannot do this volitionally.
Experimental/Investigational · 2019 · IMR EI19-31601

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.

How to use this in your appeal

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 ALS, 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

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.

Fighting a denial for ALS? Use the California record to prepare.

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