In October, 2012, Holly, now 10, Melbourne, was diagnosed with the often devastating, ultra-rare blood disease, aHUS. He only treatment option at the time was plasma exchange.
For the eight months following her diagnosis, Holly’s mum, Linda, watched helplessly as her daughter lived with a catheter in her stomach, and battled ongoing tiredness due to her gruelling treatment regimen.
“On plasma exchange, Holly couldn’t be herself. She couldn’t play outside or in the playground,” said Linda.
“She still lives with kidney damage and high blood pressure due to her aHUS episode, and still has to visit her doctor for blood tests every six weeks, and her paediatric specialist every 12 weeks to review her condition.
“It was amazing to read the story of the little boy, Joseph, that featured on the aHUS Patient Support Group Australia (aPSGA) website on 16 September 2015, and to hear how he was granted access to Soliris following his diagnosis, and within a month, was back to kindergarten,” Linda said.
“Should Holly’s aHUS ever flare again, I would hope that she was granted immediate access to Soliris, rather than having to resort to painful plasma exchange therapy again.
“Now that we know what plasma exchange is really like, I don’t think Holly could handle it again,” said Linda.
Appealing to the Federal government to exercise compassion, Linda contends it should be the doctors who work with the aHUS patients every day, and understand their disease, who should be charged with determining whether they should continue to have access to Soliris, or not.
“It’s not fair to deny the small number of Australians living with aHUS access to a treatment that is saving their lives.
“If they need Soliris, they should be able to access it,” Linda said.
“I don’t understand why it’s up to the government to allow people access to Soliris.
“If people need access to a life-saving medicine that is available, they should be able to do so.” Linda said.