Acting Chief Medical Officer sentencing aHUS patients to grave based on farcical rationale – December 17, 2015

May Ali appearing on Channel 10's, The Project

May Ali appearing on Channel 10’s, The Project

What are your thoughts on the recent statement issued by the Federal Health Department’s Acting Chief Medical Officer, Dr Tony Hobbs, in response to mother-of-two and aHUS patient, May Ali, Perth, who has called upon the Federal Health Minister to reinstate her access to the lifesaving medication, Soliris (eculizumab)? Click here to view Dr Hobbs’ statement.

May’s treating doctors’ application (involving four specialists) for her to continue to access Soliris was recently rejected by the Federal Health Minister’s appointed ‘Expert Reference Group’ (ERG) because she had been achieving good clinical results on the treatment for the past 12 months and therefore required a break from treatment to determine whether Soliris was still suitable for her medical needs.

According to Dr Hobbs, this decision was made on the basis of “medical precaution and good clinical practice to ensure that patients are not taking medication unnecessarily, as all medicines have potential side-effects.

“If the tests show that a patient no longer has active disease, based on criteria developed with experts in this field, the PBAC has advised that regular monitoring following a break in treatment would be standard clinical management strategy”, Dr Hobbs said.

Dr Hobbs further stated, “in order to ensure that the right patients are assessed for temporary discontinuation of the treatment, the government has established a group of experts from the Haematology Society of Australia and New Zealand (HSANZ), the Australian and New Zealand Paediatric Nephrology Associations (ANZPNA), which is takes with reviewing applications to ensure there is an additional level of clinical protections to ensure the correct decisions are made regarding an individual patient’s circumstances” and that “these arrangements are not meant to put a patient at risk, but just good clinical practice.”

The aPSGA’s multiple requests to the Federal Health Minister to determine who these faceless so-called “experts” are, none of whom appear to be the treating specialists of any of our members, continue to fall on deaf ears.

Would you take a patient living with HIV off their anti-viral medication which they require for life? Would you take a patient living with an organ transplant off their immunosuppressant therapy which they require for life? Would you take a patient living with heart disease off their cholesterol lowering medication which they require for life?

The aPSGA likens this criteria to the Government performing cold-blooded murder, which is further compounded by being so close to Christmas – a time of year when hospitals and government departments lose staff to the holiday season.

May waited two weeks for the Government’s ERG to respond to her doctors’ application for Soliris reinitation, not the 72 hours as promised by the ERG, despite numerous prompts by her treating physicians.

As far as we’re concerned, the Government is sentencing many of our members to unjustly, premature death by a faceless guillotine.

We welcome your thoughts on this situation and the sharing of such with the Federal Health Minister, The Hon. Sussan Ley MP and the Acting Chief Medical Officer, Dr Tony Hobbs.

Show your support for May Ali and other Australians living with aHUS by reaching out and tagging the Minister on Facebook and Twitter –

Facebook: @Sussan Ley MP

Twitter: @sussanley


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