Gerry Roussianos, 40, Adelaide, was at peak health and fitness when he was rushed to hospital with suspected pancreatitis earlier this year.
Gerry was subsequently diagnosed with the ultra-rare, life-threatening blood disease, atypical haemolytic uremic syndrome (aHUS).
After a month of hospitalisation, Gerry was thrown a lifeline – he was granted access to Soliris (eculizumab), the only available and clinically proven treatment for aHUS.
Since receiving the life-saving treatment, Gerry has been able to lead a relatively normal life, returning to full-time work and even managing to kick the soccer ball around with his two sons.
However, due to the Federal Government’s strict treatment access criteria, Gerry now faces an uncertain future, with his current fortnightly infusions of Soliris likely to end in January 2017.
This is Gerry’s story.
Hailing from the Riverland, South Australia, Gerry, 40, an avid soccer fan and player, was diagnosed with aHUS in January 2016, following his admission to Ashford Hospital, Adelaide, with abdominal pain.
“One minute I was celebrating my 40th birthday and running around the soccer field. The next minute I was in hospital with pancreatitis and advanced renal failure.
“If it wasn’t for the pancreatitis, my aHUS may very well have remained undiagnosed for some time. I consider myself lucky in that respect,” Gerry said.
“I had never heard of aHUS, so the uncertainty of the disease, and slowly learning how it affects the body, was in itself, extremely stressful.”
While in hospital, Gerry was introduced to Associate Professor Toby Coates, a renal specialist from the Royal Adelaide Hospital.
“Toby was able to provide my wife, Theonie and I with a lot of reassurance and information. He gave me his mobile number and told me to contact him anytime, anywhere.
“For someone who is so smart, Toby is so laid back, approachable and able to explain complex scientific concepts in an easy to understand manner,” said Gerry.
In his third week in hospital, Gerry was granted access to Soliris, and has been receiving fortnightly infusions of the medication ever since.
Reflecting on the past year, Theonie, 38, explains how much life has changed for her family since Gerry’s diagnosis.
“Life has been a whole lot more crazy. Only he knows how he feels, but this disease has impacted on the whole family.
“Watching someone you love suffer from pain, frequent hospital visits, investigative procedures and blood transfusions, and knowing there’s often not a thing you can do to help, is hard,” Theonie said.
“Some days, he’s completely fine. Other days, he comes home from work and plonks himself on the couch with the heat pack.
“It’s heartbreaking when our two sons ask me whether their dad is going to die,” said Theonie.
Gerry concedes that while he has endured extremely tough times, his family, friends, soccer club and management at work have all been a constant source of support and strength.
“Theonie and the kids have been great. When I’m feeling crap, they know to leave me alone and not pester me.
“Management at work has been equally as supportive. They have read up on the disease and now understand how it affects people. They give me whatever time I need off,” Gerry said.
Due to the Federal Government’s treatment criteria for Soliris, Gerry and Theonie must now come to terms with what a life without Soliris will look like.
“Knowing Gerry, at this point, doesn’t have access to Soliris post- January 2017, is a scary thought.
“I don’t want Christmas this year to come, because I’m worried about what next year will hold,” said Theonie.
“If he loses access to treatment, and ends up back in the advanced stages of renal failure and is unlucky enough to then require dialysis, where is the sense in that?”
While Gerry faces an uncertain future, he is baffled by the senselessness of a child being denied access to the life-saving treatment.
“I look at young people who are on dialysis… You can’t live like that.
“What kind of lifestyle is that and how long do these young people have to live?” Gerry asked.
“A lot of the time adults can fight through it. They’re strong enough. It’s the kids I’m really worried about.”
Since Gerry’s diagnosis, Theonie has been actively lobbying the Federal Government to reconsider the parameters of funding for Soliris.
“We really need to do everything we can to make noise and raise awareness.
“People need to be seen as more than the $600,000 treatment bill,” said Theonie.
“All patients deserve to be given a fair shot at a normal life.”