Sodium phenylbutyrate-taurursodiol access, adherence and adverse event in patients with amyotrophic lateral sclerosis: Experience at one center in the United States.
Mansoureh MamarabadiEleni FafoutisAndrew M GeronimoSusan WalshZachary SimmonsPublished in: Muscle & nerve (2024)
Most patients received insurance approval for PB-TURSO, but one-fourth required appeals. Some out-of-pocket costs were very high. Investment of staff time was substantial. These findings have implications for insurance coverage of, and adherence to, future ALS treatments.
Keyphrases
- amyotrophic lateral sclerosis
- end stage renal disease
- affordable care act
- ejection fraction
- newly diagnosed
- long term care
- chronic kidney disease
- health insurance
- heavy metals
- peritoneal dialysis
- emergency department
- risk assessment
- current status
- glycemic control
- weight loss
- skeletal muscle
- patient reported
- electronic health record