July, 2015 will mark 12 years since, Debbie Basham, 53, Cairns, was diagnosed with the ultra-rare, life-threatening disease, aHUS.
“Back then, so little was known about the disease, that any information whatsoever on aHUS was extremely difficult to find,” said Debbie, who is also Treasurer of the aHUS Patient Support Group Australia (aPSGA).
“So, when Soliris (eculizumab) was approved for use on December 1, 2014, it was very exciting.
“We knew obtaining access to the treatment was always going to be difficult, even following its approval, but it offered us hope,” Debbie said.
For Debbie, being granted access to Soliris would mean she could be placed on the organ transplant list, offering her a chance to reclaim the freedom that aHUS has robbed from her.
“In March, 2015 I had a meeting with my renal specialist, Dr Mantha,” Debbie said.
“I really tried not to get my hopes up, or to expect too much, but as we hedged closer to March, I allowed myself, for the very first time, to get excited, because there was a genuine chance that I may be placed on the organ transplant list.”
However, after meeting with her specialist in March this year, Debbie’s excitement soon evaporated when she was advised that until Soliris was approved for both pre-and-post- organ transplant, he could not afford to take the risk of placing her on the organ donation list.
“When I heard the news that I couldn’t go on the organ donation list without pre-and-post approval, I was disappointed,” said Debbie.
“It’s what I expected, but for the first time in a very long time, I had allowed myself to get excited.”
Debbie continues to dialise five days a week, and until Soliris is approved for pre-and-post-transplant patients, she will not be considered for a kidney transplant.
“The only way to get a transplant is to fund Soliris yourself, or for your hospital to fund the treatment for you pre-and-post transplant.
“After fighting so long for Soliris to be approved, and then having it approved with all of the conditions attached to it, it’s disappointing that 50 per cent of Australians living with aHUS are still unable to access the only treatment proven to save aHUS lives,” Debbie said.
“It’s scary as well, because the government wants to collect more clinical data [to support increased patient access to Soliris], and under the current conditions, all patients who were granted compassionate access to Soliris at the outset will be taken off the life-saving treatment,” said Debbie.
“That’s around a dozen patients. And it’s really frightening to think what might happen to them without Soliris.
“We want to know exactly how much clinical data is enough, to remove the conditions the government has imposed,” said Debbie.
In the interim, Debbie, along with other members of the tight-knit aHUS community, will continue to fight to secure approval of Soliris for all Australians living with the devastating disease.
“Soliris is the only clinically proven, life-saving treatment for aHUS.
“I will continue to fight for removal of these conditions [with regard to accessing Soliris] because I want to keep living,” Debbie said.
“And as soon as Soliris is approved for all Australians living with aHUS, I hope the doctors will approve me for an organ transplant.”
To learn more about Debbie’s plea for life, watch her short video here.