Spinraza Consumer Comments

URGENT ACTION REQUIRED

The next phase to see Spinraza (nusinursen) on the PBS is here, and this requires YOUR input.

Are you a family, person, support network, health professional carer who is living or supporting someone with Spinal Muscular Atrophy?

We encourage you to be part of the consumer comments process, so that you can provide comments about the impact of this drug for SMA.

There are no right or wrong answers, just follow the questions, and answer truthfully.

A funding application for nusinersen will be considered by the Pharmaceutical Benefits Advisory Committee (PBAC) at their November 2017 meeting.

The purpose of the application is to request Government funding of nusinersen on the PBS for the treatment of infantile-onset (Type 1) and childhood-onset (Type 2 and 3) SMA.

The full agenda for the November 2017 PBAC meeting, including the proposed PBS Listing, has been published on the PBS website and can be found at: http://www.pbs.gov.au/info/industry/listing/elements/pbac-meetings/agenda/november-2017-pbac-meeting 

As part of the PBAC submission process, clinicians, families, carers, patients and patient groups are invited to provide comments on the impact of SMA, for consideration by the PBAC.

The consumer comment period is now open till 4th October 2017.

Alternatively you may submit letters or documents via email to: CommentsPBAC@health.gov.au

Comments must be completed and submitted by 4th October 2017.

WHAT COMMENTS DO I MAKE?

What comments would you like the PBAC to take into account when it considers this submission? You may comment on any aspect of the drug, vaccine or medicinal product in question. The following points may be useful for guidance:

  • How does this condition/disease affect quality of life?
  • What would you most like to see from this treatment? Improved side effects? Slowing disease progression? More mobility? Other benefits?
  • If you have used or prescribed this new medicine, what was your experience of the beneficial effects?
  • If you have used or prescribed this new medicine, what side effects or toxicities did you experience or observe?
  • If you haven’t used the new medicine yet, what are your expectations of it?
  • If you use other currently available therapies or medicines you use to manage your condition (or for prescribers, for your patient’s condition), what are the benefits and/ or the challenges?
  • Where did you obtain the information that helped form your views on this treatment?
    • I have been a patient on this medicine;
    • Your doctor;
    • Other patients stories/experiences
    • Professional colleagues;
    • Support networks;
    • Own research;
    • Other patient resources;
    • Direct experience as a health professional or carer;

Consumer comments form

http://www.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form