In January, 2009, then six-and-a-half month old Ashley, now seven, became increasingly agitated and unsettled. This uncharacteristic behaviour prompted his mother, Kerri, 37, to seek prompt medical attention.
Kerri’s “perfect baby boy” was subsequently diagnosed with anaemia, and she was advised to take him to hospital straight away.
It was in hospital that Kerri learned Ashley was living with an ultra-rare, life-threatening blood disease known as atypical haemolytic uraemic syndrome or ‘aHUS’.
This is Ashley’s story told through the eyes of his loving mother.
“It took around three weeks for the news that Ashley was living with an ultra-rare, deadly disease to sink in,” said the grief-stricken mother-of-five, whose son Ashley, is her second youngest.
“When I finally came to terms with the news, I cried and cried and cried.”
Following his diagnosis, Ashley spent 13 agonising months in hospital undergoing constant dialysis and receiving plasma therapies, and was rarely able to leave.
In February, 2010, this harrowing scenario changed when, literally on death’s door, Ashley became Australia’s first aHUS patient to be granted the life-saving and life-transforming, yet cost-prohibitive treatment, Soliris (eculizumab) through the manufacturer’s compassionate use scheme. Since then, Soliris has allowed Ashley to reduce his “at least” 5-times-per-week hospital visits to only fortnightly, and to resume a relatively normal life.
Kerri, who later founded and became President of the aHUS Patient Support Group Australia (aPSGA), has rallied the Federal Government rigorously, to save the lives of all Australians living with aHUS, by granting them access to the life-saving, yet cost-prohibitive treatment, Soliris.
In December, 2014, the fruits of Kerri’s labour and that of the greater aPSGA’s membership, were recognised with the Pharmaceutical Benefits Scheme (PBS) listing of Soliris under Section 100: The Highly Specialised Drugs Program, with the government allocating $63 million in funding for Soliris for the ensuing four years, for those aHUS patients who met the Government’s strict treatment access criteria.
Fortunately, Ashley, unlike various other aHUS patients, met the treatment access criteria, and he was subsequently granted government-subsidised access to the cost-prohibitive medication.
“Ashley commenced his PBS-subsidised treatment on December 11, 2014,” said Kerri.
However, the restrictive criteria imposed by the government for accessing Soliris, provided aHUS patients, including Ashley, with only 12 months’ access to the life-saving treatment. As such, Ashley received his final, subsidised dose of Soliris on November 26, 2015.
“It’s terrifying knowing that Ashley is no longer on Soliris,” Kerri said.
“My kids, husband and I are all so scared.
“I just completed my Nursing degree and I’m due to start work in February, 2016. But should Ashley fall sick again, given he is no longer on Soliris, that will put my new job on hold,” said Kerri.
“Worse still, we don’t know what will happen to Ashley if he falls sick again, or how sick he will need to be to requalify for access to Soliris.”
Since being granted access to Soliris, Ashley has begun to enjoy life. He recently went on a camping trip with the Challenge Group – a hospital-funded camping trip for children living with chronic illnesses, including aHUS. He has also been able to attend school, and has even started swimming lessons.
“Ashley was doing really well on Soliris,” said Kerri.
“It was such a relief, knowing he had access to the life-saving treatment.
“Soliris allowed Ashley to spend more time at home; more time at school; and more time being a normal kid again,” Kerri said.
“Before accessing Soliris, Ashley spent most of his life in hospital, attached to dialysis and plasma exchange machines.
“Our biggest concern, now that Ashley no longer has access to Soliris, is the substantial organ damage he sustained for more than a year, before he was granted initial access to the treatment through the manufacturer’s compassionate treatment program,” Kerri said.
“If Ashley stops accessing Soliris, his organs could fail completely, and he would be forced onto dialysis. Should this occur, we are gravely concerned that Ashley would be considered a treatment failure, and never again able to access the treatment [Soliris] that has improved his life so much.”
Kerri is appealing to the Federal Health Minister, The Hon. Sussan Ley MP, her local MP and all Australian MPs of various political persuasions, representing the electorates of patients living with aHUS, to continue funding Soliris for individuals unable to survive without access to the treatment.
“On behalf of the aPSGA, I am calling upon Minister Ley and the PBAC to please consider developing a separate set of criteria for those who have sustained irreversible organ damage from aHUS, before receiving access to Soliris,” said Kerri.
“These patients, like Ashley, are facing a very different set of challenges to those patients who were granted immediate access to Soliris following an aHUS diagnosis.
“Accessing Soliris is critical. Without Soliris, Ashley could die,” Kerri said.
“The government must create a separate set of criteria so that people, like my son Ashley, have a shot at leading a long, healthy and active life.”