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aHUS Patient Support Group Australia

Warm but cautious welcome of Government funding for Soliris

Media release 
September 18, 2014
For immediate use 

Warm but cautious welcome of Government funding for Soliris 

The aHUS Patient Support Group Australia (aPSGA) warmly but cautiously welcomes today’s announcement by the Minister for Health, The Hon Peter Dutton MP regarding Federal Cabinet’s alleged approval and willingness to earmark $63 million over the next four years to fund Soliris (eculizumab) under Section 100: Highly Specialised Drugs Program on the Pharmaceutical Benefits Scheme (PBS) for the small group of Australians with aHUS whose lives ultimately depend on it. 

The announcement comes as a surprise to the aPSGA, given Soliris was approved for the treatment of aHUS by the Therapeutic Goods Administration (TGA) more than 23 months ago (October, 2012) and many of our members have since spent their life-savings, or gone bankrupt in a bid to access this life-saving, scientifically proven, yet cost-prohibitive medication. 

“It appears our proactive, ongoing government lobbying for access to Soliris is paying off and the government is showing some compassion towards Australians living with, or caring for those with aHUS,” said aPSGA President, Mrs Kerri Grey.

“While Mr Dutton’s announcement is certainly a step in the right direction for aHUS patients, it is in no way ideal. 

“The aPSGA does not agree with the PBAC’s August 25, 2014 proposed funding criteria to Mr Dutton which states treatment with Soliris will be discontinued in all aHUS patients, including those gaining the most benefit, after only 12 months, after which patients would need to experience another potentially life-threatening flare before being able to re-qualify for recommencing Soliris,” said Mrs Grey. 

“Furthermore, Medicare should not decide the fate of aHUS patients by determining whether they should stay on, or be removed from treatment, as per the PBAC recommended criteria, but rather their treating clinicians.” 

The TGA approved prescribing information for Soliris states treatment is recommended for the patient’s ‘lifetime’. 

At a cost of more than $600,000 per adult per year, the treatment, which sits largely untouched on hospital pharmacy shelves, has unconscionably been out of reach of every Australian living with aHUS, entangled in a quagmire of government bureaucracy for far too long. 

According to global estimates, approximately 60 to 70 Australians should be living with aHUS. Yet the aPSGA is only aware of less than 30 Australians. Mr Dutton’s reported ‘35 new cases of aHUS’ diagnosed each year therefore comes as news to the aPSGA. 

“We would like to see solid evidence of Federal Cabinet’s approval of Soliris, rather than just verbal rhetoric, and obtain absolute clarity around the treatment’s future administration in the hospital system,” Mrs Grey said. more#

“We will be meeting with Mr Dutton next Wednesday, September 24 to further explain our position.

“But for the sake of Australians living with aHUS who are gravely ill, it is certainly good news that the government has put some money aside. 

“So let’s get the treatment into these patients straight away, for right now, no Australian is receiving fully subsidised government access to Soliris,” said Mrs Grey. 

“We implore Mr Dutton and the manufacturer of Soliris to reach a hasty final agreement to avoid any further deaths from delay.

“Please stop the tug-of-war and make Soliris available to fellow Australians whose lives depend on it,” Mrs Grey said. 

Australians living with aHUS are encouraged to speak to their doctor about the proposed funding criteria and how and if, it applies to them. 


For more information, please contact Mark Henderson or Kirsten Bruce from VIVA! Communications on 02 9968 3741 or 0431 465 004 / 0401 717 566.