Toward the end of November last year, as aHUS patients began to lose their subsidised access to the life-saving treatment, Soliris, six year old Emma’s parents, Tracey and John, felt hopeless and nervous about their daughter’s future.
“When it [continuing access to Soliris] was up in the air, we were really nervous about what would happen to Emma,” said Tracey.
“We didn’t want her to get sick again, and we were so worried about what could happen.
“Emma’s doctors were saying that they wanted her to stay on Soliris, but without subsidised access, we were left in limbo, which was very nerve-wracking,” Tracey said.
“When we thought she was due to come off Soliris, we were advised by her doctors that she had one more dose, scheduled for December 15, 2015.
“So we took Emma in to hospital to obtain, what we thought, would be her final dose of Soliris,” said Tracey.
“However, the very next day [December 16, 2015], The Hon. Sussan Ley MP announced all eligible aHUS patients would be granted extended access to Soliris for up to 12 months and Emma was approved for 24 more doses, which will last her six months, before her doctors are required to reapply for continued access for the following six-months.
“When she completes her subsidised course of treatment, Emma’s doctors will need to reapply for her continuing access,” Tracey said.
Since securing continuing access to Soliris, Emma, who turns seven next month, has remained in good health.
“Emma loves to swim, and thanks to Soliris, she’s able to swim regularly,” said Tracey.
“Prior to accessing Soliris, her treatment regimen left her completely spent, and unable to get into the water.”
Originally granted subsidised access to Soliris in October 2013, Emma has continued to improve in leaps and bounds.
In September 2015, Emma and her family were able to take a long, overdue holiday. So they jetted off to the UK. The only constraint they had at the time, was that Emma had to be back home in time to obtain her fortnightly dose of Soliris.
“It was a long way to go for two weeks. But we’ve since been advised that when we next travel, we may be able to obtain a dose of Soliris while overseas,” Tracey said.