A year has passed since seven year old aHUS patient, Ashley Grey, Melbourne, was granted access to government-subsidised Soliris (eculizumab) through the Pharmaceutical Benefits Scheme (PBS) Section 100: Highly Specialised Drugs Program (HSDP).
Ashley received his last subsidised dose of the life-saving medication on Thursday, November 26, 2015.
His mother and President of the aPSGA, Kerri Grey, is continuing to fight for her son to gain urgent access to the medication.
“It’s terrifying to think that Ashley has come off Soliris.
“My kids are scared. Both my husband and I are scared,” Kerri said.
“I just finished my Nursing degree and am due to start work in February, 2016, but if Ashley gets sick again now that he’s off treatment, all of this will be put on hold.
“I don’t know what it will be like if he gets sick again, and I don’t know how sick he’ll have to be to get back on Soliris,” the desperate mother explained.
The doggedly determined aPSGA President reached out to her local Member, The Hon. Tony Smith MP, on November 18, 2015 for assistance, and was invited to meet in person with him two days later.
During the meeting, Kerri shared her son’s medical history with him, explaining that Ashley, along with a small number of Australians who owe their lives to Soliris, are all set to lose access to the lifesaving treatment over the next couple of weeks, as the government criteria deems they are no longer suitable to receive subsidised access to the cost-prohibitive therapy.
Kerri also shared the life stories of Cairns-based aPSGA members, Debbie Basham and Sarah Mulligan, whom had both met with an Adviser to the Federal Health Minister, The Hon. Susann Ley MP, to share their plea for life.
Mr Smith, who was in Canberra last week and this week, promised Kerri he would raise the issue of Australians losing access to Soliris with his peers and fellow influencers.
Following this interested response from her local MP, Kerri urges all other aPSGA members, their families and friends, to contact their respective local Members, and to share their aHUS stories and need for continuing access to Soliris.
“I wish to thank The Hon. Tony Smith MP for listening to me, and offering to assist Ashley and the broader aPSGA community,” Kerri said.
“The more local Members we have on side, the more direct pressure we place on the Government, which increases the likelihood that the criteria for accessing Soliris will be changed.”
We have a great tool available to assist you with approaching your local and Federal MP. Access our aPSGA blog here to learn more.