New Brunswick treatments

ROCHE: Evrysdi – Risdiplam


Effective May 24- , 2022 – According to Bulletin 1008, EVRYSDIⓇ (risdiplam) will be covered through the New Brunswick Drug Formulary. For the treatment of 5q spinal muscular atrophy (SMA), if the following criteria are met:
• Genetic documentation of 5q SMA homozygous gene deletion, or compound heterozygous
mutation; and
• Patient is not requiring permanent invasive ventilation; and
• Patient who is symptomatic with two or three copies of the SMN2 gene and is:
– 2 months to 7 months of age, or
– 8 months to 25 years of age and non-ambulatory.
Discontinuation Criteria:
• There is failure to demonstrate maintenance in motor milestone function as assessed using
age-appropriate scales since treatment initiation; or
• permanent invasive ventilation is required Clinical Notes: 1. An age-appropriate scale is defined as the Hammersmith Infant Neurological Examination (HINE) Section 2, Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND), or Hammersmith Functional Motor Scale-Expanded (HFMSE). New Brunswick Drug Plans 5 May 2022 2. A baseline assessment using an age-appropriate scale must be completed prior to initiation of treatment. 3. Yearly assessments must be completed using an age-appropriate scale no more than 12 weeks prior to the renewal date. 4. Permanent invasive ventilation is defined as the use of tracheostomy and a ventilator due to progression of SMA that is not due to an identifiable and reversible cause.

BIOGEN: Nusinersen – Spinraza


Initiation Criteria
1. Pre-symptomatic patients with two or three copies of the SMN2 gene, OR

2. Had the disease for <6 months, two copies of SMN2, and symptom onset after the first week after birth and on, or before seven months of age; OR 3. Patients under the age of 18 with symptom onset > 6 months of age, and never achieved the ability to walk independently.†

Stopping Criteria
1. For those pre-symptomatic at initiation: no improvement on HINE-2, CHOP INTEND, or HFMSE, OR

2. For those symptomatic at initiation: no improvement in HINE-2, CHOP INTENT, or HFMSE, OR

3. Permanent invasive ventilation required

“Requests for patients who do not meet the above criteria may be considered on a case-by-case basis.”

NOVARTIS: Onasemnogene abeparvovec – Zolgensma



Août est le mois de la sensibilisation à l’amyotrophie musculaire spinale (AMS) !

Août est le mois de la sensibilisation à l’amyotrophie musculaire spinale (AMS) ! Cure SMA Canada sensibilise le public dans tout le Canada afin d’apporter l’espoir d’un avenir où l’amyotrophie spinale sera une maladie guérissable.   Cette année, la Tour CN et la Tour de Montréal seront illuminées en violet et en orange, les couleurs…

Cure SMA Canada – Conférence canadienne d’AMS 19 – 21 août 2022 Montreal, Quebec Le Centre Sheraton Montréal 1201 Blvd Rene-Levesque West

{{ vc_btn:title=Agenda&style=classic&color=warning&align=center&button_block=true& }}

Novartis Community Update


103-7134 VEDDER RD.


TOLL FREE 855.824.1277

BC 604.824.1277

FAX 604.824.1363


Please email Susi Vander Wyk at head office