Atypical Haemolytic Uraemia Syndrome

March 03, 2014


3rd March 2014

 

I draw the House’s attention to the inspirational story of Katherine Marshall and her family

who live in my electorate. Katherine is 23 years old and has been fighting an extremely rare

immune disease, Atypical Haemolytic Uraemia Syndrome or aHUS, since 2010.

 

When I first met the Marshall family in 2012, Katherine was consigned to a life at home,

besieged by constant fatigue and endless trips to the hospital.

 

Her family and physicians drew my urgent attention to Soliris, a drug produced by Alexion

Pharmaceuticals. Alexion has been gracious in providing a compassionate access supply of

Soliris to Katherine. The effect on Katherine was immediate and positive. In her father’s,

Gary’s, words: ‘She is a totally different girl now.’

 

Since then, the Marshall family have advocated for other aHUS sufferers, many of whom

do not have compassionate access. They have established a support group and attracted

national media about the need for aHUS sufferers to be covered for Soliris under the Life

Saving Drugs Program.

 

This support group has run a national petition calling on parliamentarians to support

funding for Soliris through the Life Saving Drugs Program for sufferers of aHUS. More than

22,000 Australians signed the petition, which was tabled in the House earlier today.

 

I want to commend their energy, compassion and sacrifice and to support their effort.

 

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