Updated: Feb 18, 2020
United Healthcare policy regarding disease modifying therapy not in line with FDA guidelines.
A few days ago we sent letters on behalf of SMA United for Treatment Options to ask that the CureSMA workgroup revise the following statement which appears on both Spinraza and Zolgensma policies at United Healthcare insurance:
"Patients with four copies of SMN2 should be screened periodically for symptoms and referred to a geneticist to determine the exact number of SMN2 copies, but the working group recommends against immediate treatment with a disease modifying therapy.”
We need to make sure the FDA label is being adhered to and newborns are treated regardless of the number of SMN2 copies present, as soon as they are detected by new born screening.
We will keep everyone updated on further developments.