Call for Comments

Please note: the submission deadline has now closed. Thank you to everyone who submitted their comments. We had a record 800 submissions.

 

Headache Australia helps educate patients on Channel Nine’s A Current Affair

Watch the 5 minute feature by clicking on the video above.

 

May 21, 2018

Have your say on the Australian Government’s PBS reimbursement of the first new treatment specifically designed to prevent migraine.

The deadline is Wednesday June 6, 2018.

It’s time for the members and readers of Headache Australia to have your say about what the reimbursement of this breakthrough new treatment for migraine would mean for you or anyone diagnosed with migraine.

Aimovig®, also known as ERENUMAB, is the first preventative treatment designed specifically to prevent migraine. Trials have shown that this treatment is safe and effective with many patients experiencing a significant reduction in their migraine frequency.

This treatment involves a sophisticated monoclonal antibody designed to specifically target molecules released during migraine and prevent them from triggering an attack. The development of this breakthrough treatment has involved decades of research. It was recently approved in the US on May 17, 2018. In Australia it is still under medical review but it hoped that this class of medicine will be approved and made available later this year.

Unfortunately, without PBS support, it is expected that the cost of this treatment will be beyond the affordability of the average patient with migraine.

 

Background

The Pharmaceutical Benefits Advisory Committee (PBAC) advises the Federal Government on which medicines to subsidise on the Pharmaceutical Benefits Scheme (PBS). 

The PBAC has requested public and personal comments from Australians who are living with or treating migraine or their carers. We are notifying you about how you can participate and make your voice heard.

If you or anyone you know has migraine please take a few minutes to fill out the PBAC submission. The PBAC are required to read every submission and do not publish or reveal the names of individuals. 

An important part of the reimbursement process involves the Government and the PBAC hearing from doctors, patients, their families and other medical and patient groups to incorporate everyone’s perspective into the decision to cover or include a particular type of treatment, or not.

 

Your Comments Needed By June 6, 2018

As part of this review you are invited to provide your comments which may help the Government’s advisors to understand:

– Your experience with treating or living with migraine.

– How you think this medicine will affect the lives of patients, their families and/or carers.

To support our submission the Government needs to hear from you. It’s easy and requires less than 10 minutes which could help you save thousands of dollars on treatment costs.


We need you to write to the PBAC to ensure they understand how painful and disabling migraine disease is, how limited in effectiveness current treatments are, and how great the need is for patient access to new and more effective preventive treatments.

Patient input must be received by Wednesday June 6, 2018. This is your story to tell and a chance to be heard and advocate. Everyone’s story will be different, but it’s important that we all emphasize key points to show that we are a strong and united community.

To have your own say and help improve patient access to better migraine treatments visit the PBAC website and follow the directions.

Remember the deadline is Wednesday June 6th, 2018



 

ADVOCATE FOR BETTER MIGRAINE TREATMENT

 

Step 1: Visit the PBAC submission page using this link

Step 2: Fill out the form on that link which corresponds with the below questions.

Step 3: Email Headache Australia here notifying that you have submitted a comment.

Step 4: Send this note to any friends or family who may be interested in helping to raise the voice of migraine patients.

 



 

INSTRUCTIONS

 

Below are the form questions and response suggestions. Click here to begin the form

 

Medicine Name:  Erenumab -Aimovig® (select from the drop-down menu). 
Submitted by: Individual (select from the drop-down menu). 
Email: Your email
Phone number: Your phone
Street address: Your address
Suburb: Your suburb
State: Your state
Post code: Your post code

 
Declaration of interest: 

Please include any declarations you wish to make regarding your PBAC submission. If you have no declarations to make, please respond “nil”.

 
Consumer input:

Please indicate whether you are a person with this medical condition, a friend or family member, a prescriber, a representative of an organisation or other interested person.

 
What comments would you like the PBAC to take into account when it considers this submission?

This is where you post your personal experience. This can be as short or as long as you wish. 

Consider highlighting in your comments:

  • What has been your migraine journey? e.g.
    • When did you first start experiencing attacks?
    • What does an attack feel like to you?
    • How often do you experience migraine attacks?
  • What has been the negative impact migraine has had in your life? e.g.
    • What are you unable to do now that you used to be able to do?
    • How have you had to alter your lifestyle due to migraine
    • The impact on education, work, family life, relationships etc. 
  • What has been your experience with other medications? e.g.
    • List what treatments you have tried or currently using.
    • Share the limitations or downsides of your current treatment regime including side effects and inability to fully treat migraine.
  • Has migraine led to other issues such as rebound headaches, depression, anxiety, or other challenges?
  • What would it mean to you to have a safe, affordable and effective treatment?

Note that this is not a “test” and all submissions will be reviewed by the committee and are appreciated for their personal and private nature. Be honest, direct, polite and respectful.

 
How did you learn about this submission process?

Headache Australia monitored the submission process and notified the community about this comment period. Headache Australia is part of the Brain Foundation, a registered national Australian charity.

We greatly appreciate your time and effort to support patients living with migraine. 

Questions? Ask us here.

Thank you,

Headache Australia

 

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