PBS approval for effective migraine medication

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The Hon. Greg Hunt, MP

Minister for the Health

Dear Minister

The PBAC this week declined a new medication onto the Pharmaceutical Benefits Scheme (PBS) despite very successful clinical trials over recent years. I had my first migraine attack at the age of 10. At 16 I was diagnosed with a migraine disorder.  I am now 52.  I'm one of the lucky ones - I've managed to marry, have three beautiful children, study and work. 

According to current statistics, (Migraine World Summit, 2019: Migraine White Paper, 2018) migraine is the second most costly disorder to society in terms of health treatment and loss of productivity. Up to seven million people in Australia are affected by migraine and headache (Headache Australia, 2019).  Nearly all migraine sufferers and 60% of people with tension type headaches experience reductions in social activities and work capacity (Headache Australia, 2019). The total economic cost of migraine in Australia is $35.7 BILLION per year including healthcare and loss of productivity costs (Headache Australia, 2019; Migraine in Australia, Deloitte Access Economics Report, 2018). 

I’ve experienced on average 8-10 migraines a month since I was 16. By the statistics, I’ve lost 6 productive years of my life.  I am usually admitted to hospital at least twice a year and miss work regularly. I am unable to work full time. Sadly, over the years, I’ve missed several of my children's birthday celebrations because I couldn’t get out of bed due to my migraine.  I can't even estimate the money we've spent on trying to reduce symptoms (including a trip to South Africa in 2014 for surgery) but I can tell you that currently, I spend $200 per WEEK on trying to improve my life. With my last attack my teenage children asked me if I had considered the disability pension!!  That made me feel sad and guilty.

RECOMMENDED TREATMENT: I have just finished a free three month trial of a medication only recently released in Australia called Aimovig - it's an injection that I self administer once every four weeks and it acts on the CGRP receptors in the brain. I this week PAYING $700 OUT OF POCKET each month to continue taking Aimovig. 

GREAT NEWS - the days lost to migraine per month have reduced from 8 down to 1 - that means only three migraines so far this year! I feel like I am starting to get my life back, I'm more confident at work, my anxiety is slowly reducing and I am working hard at my relationships. I feel like I’m contributing again. 

The pharma company and other parties involved are still hopeful that this medication will be approved for PBS funding in the future but meanwhile the money drain continues for our family. 

To keep this quality of life, which many take for granted, I am humbly asking for your help. Please address this issue URGENTLY with the PBAC so the migraine sufferers who do not respond to other treatment, can get their life back.  

Yours faithfully

Linda Rollason