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Please subsidise my life saving treatment

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Dear Minister Ley,

I am writing to you as a mother who is putting her life and that of her son’s within your hands.

I was diagnosed with the very rare Pompe's disease in mid-2012 after long years of inexplicable health deterioration. Although the treatment for Pompe's (made by Genzyme and called Myozyme) is subsidised by almost all Western and Middle Eastern countries, the Australian government has refused to subsidise the treatment for patients over 18, while my health is deteriorating rapidly and time is against me.

My muscles are weakening, including my lungs which will cause premature death. I have been on a Bi-Pap machine for more than two years and I have had numerous risky dangerous falls both inside my home and outside due to muscle wastage.

Unfortunately your office continues to say that they need more time, but this is something I simply don’t have as my health is deteriorating every week.

I'm a 47 year old single mother of a 13 year old beautiful son. We have no family in Australia and my son has no one but me in this world. My deterioration has impacted on him tremendously. It adds to my sorrow to see my child suffer due to all the challenges that we have been facing, instead of enjoying his life during his very sensitive teenage years. No child should be subjected to watching his mother die slowly, especially when it can be avoided. The treatment is locally available, subsidised and administered, but only for patients under 18.

I wish to maintain my independence and continue to work and pay my taxes. I do not wish to rely on the disability pension and community services which would cost the government more than the treatment. I want to be here a bit longer to make sure that my son can stand on his own feet. I am the sole provider for him.

In desperation, yours sincerely,

Lama Al-Akhras


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