The treatment clock is ticking for this brave South Australian family
Imagine measuring your life in 12 monthly increments?
For 40-year-old father of two Gerry Roussianos this is his new reality after falling ill and being diagnosed with atypical Haemolytic Uraemic Syndrome (aHUS) earlier this year.
aHUS is an extremely rare, life-threatening blood disease which affects one-in-two million Australians. Caused by chronic activation of the complement system, (part of the immune system) the disease severely damages the body’s vital organs including the kidneys, heart and brain.
The only approved treatment for aHUS is a drug called Soliris (eculizumab). The drug, a form of chemotherapy that prevents aHUS progressing and restores kidney and major organ damage, sits beyond the reach of most people at an annual cost of $500,000 per adult.
“I can’t quite believe what has happened in just eight months. One moment I was working, playing my regular game of soccer and celebrating my 40th birthday with family and friends; next I was desperately ill in hospital,” Gerry said.
“Now we are facing an uncertain future with my current fortnightly infusions of Soliris possibly ending in January 2017. It’s a year-by-year thing – where each case is assessed individually so we are in a holding pattern for now,” he said.
Despite the disease attacking Gerry’s body with force, he says he has returned to reasonable health due to the Soliris treatment.
“I have been able to return to work and even managed a kick of the soccer ball,” he said.
“The drug is actually repairing the damage that has been done – so I hope we can raise this with the Federal Government so they can let people have access to the drug not just for Gerry but others in similar situations,” Gerry’s wife Theonie explained.
“We are so grateful to our doctors like kidney specialist Professor Toby Coates who have been incredibly supportive. They have given us so much to hope for including giving Gerry access to Soliris treatment so far,” she said.
Without the drug the couple know Gerry’s condition could worsen. He could end up in renal failure and be added to a waiting list for a kidney transplant.
“We are now having genetic testing done to see if Gerry’s aHUS is genetically acquired. If it is something we have to live with we might as well know as much as we can about it,” Theonie said.
Prof Coates said “We are incredibly lucky to have access to such life-saving drugs and technology in Australia but more research is needed to understand the basis of these diseases and what we can do to stop and prevent them.”
In the meantime Gerry and Theonie remain hopeful.
“We have to be optimistic – for ourselves but more importantly for our two young sons, Nikolas and Kristos.
“Gerry has always been a positive person, so he keeps smiling despite the obstacles we face.
“Even when he was so ill in hospital for all those weeks, with clots in his lungs, an inflamed pancreas and advanced kidney failure he kept playing guitar to entertain the other patients.
“We have to be strong and keep going so we can help others going through similar tough times.
“If we can raise awareness about the urgent need to access clinically proven treatments like Soliris then we will have achieved something,” she said.
Currently there are more than 30 countries worldwide giving their aHUS patients access to the Soliris treatment through Government or private health insurance programs.