Sarah Grant, 29, North Avoca, NSW, is entangled in a cruel “catch 22”, having spent the last eight years moving in and out of intensive care, attached to a dialysis machine to ultimately keep her alive.
Sarah has been living with the ultra-rare, life-threatening blood disease, atypical haemolytic uremic syndrome (aHUS), for just shy of a decade.
The only available and clinically proven treatment that can save her life, Soliris (eculizumab) is currently available to some experiencing acute episodes of aHUS who are yet to progress to end stage renal disease (ESRD).
However, the treatment is out of reach of Sarah because she is on dialysis, and can’t be taken off dialysis until she is first granted access to Soliris.
This is Sarah’s story.
In 2008, Sarah had just celebrated her 21st birthday and was in the prime of her life when she was diagnosed with aHUS.
“I began vomiting uncontrollably and became a bit delirious. I knew something wasn’t right, so I went to the GP. He didn’t think it was anything to worry about, and told me to just eat dry biscuits and get some rest.
“For two weeks I couldn’t hold down any water. I had to take my dad back to the doctors to demand a blood test,” Sarah said.
Sarah was eventually admitted to the emergency at Nepean Hospital, Sydney, at 9pm and within a matter of hours, was told she was in renal failure due to a rare blood disease. She was rushed to ICU where she was hooked up to a machine and immediately commenced plasmapheresis.
“I remember asking the nurses whether I was going to die. They couldn’t give me a straight answer. I was terrified.”
“I had been healthy my whole life and then overnight a switch flicked, and just like that, my life was never going to be the same,” said Sarah.
“Over the next few weeks in ICU, I began to understand. It dawned upon me that I wasn’t actually going to get better, and that I could die.”
In ICU, Sarah was introduced to Dr Eddy Fischer, a Nephrologist from Nepean Hospital.
Dr Fischer refers to Sarah as his “number 1”, because she is the worst aHUS patient he has allegedly ever seen.
In 2010, Sarah’s mother donated a kidney to her, granting her three dialysis-free years during which she was able lead a “relatively normal life.”
During this period, Sarah moved to Wagga Wagga to complete her second degree in Medical Radiation Science.
While an average kidney transplant has a lifespan of eight years, a blood test and eventual biopsy confirmed Sarah’s body had rejected the new kidney after only 3.5 years.
The aHUS had eaten away at Sarah’s kidney, and within two weeks of learning that her kidney transplant had failed, she was plunged straight back into the world of dialysis.
“My second transition onto dialysis was so much worse than the first time because my body was fighting a non-native kidney. I vomited every day for a year,” Sarah said.
In November 2014, Sarah’s older sister, Rebecca, 31, presented with similar symptoms at Nepean Hospital, and she too was subsequently diagnosed with aHUS, confirming the condition was in fact genetic.
However, as a patient in the early stages of diagnosis, Rebecca was fortunate enough to receive a compassionate dose of Soliris – the treatment with which her younger sister had been denied for six years.
Now aged 29, Sarah lives with her mum, dad and fiancé on the NSW Central Coast and spends every second day tied to a dialysis machine.
“The actual length of each treatment episode takes 5 hours. However it takes an hour either side to set it [the treatment] up. Then the following day, I almost always end up with a migraine which lasts the whole day. Then the whole process starts again the next day,” explained Sarah.
“A dialysis nurse once told me that undergoing dialysis is equivalent to your body running a half marathon every time you do a session.”
Armed with a steely determination, Sarah is now calling upon the Federal government and Federal Health Minister, The Hon. Sussan Ley MP, to make Soliris available to dialysis patients living with aHUS.
Avid aHUS campaigner whose daughter is also living with aHUS, American Jeff Schmidt, has started a Change.org petition to plead with the Federal government to reconsider the parameters around funding Soliris. The petition has attracted a significant 43,603 signatories to date.
Sarah has been senselessly robbed of her 20’s, having spent the last eight years unable to work, travel, drive and socialise with her friends.
Sarah concedes that some days she feels like a 21 year old trapped in a 29 year old’s body, after spending the past eight years in a limbo state of mind.
She envisions a future where, with help from Soliris, she can marry her fiancé, Jarred, return to work, and eventually start a family.
Sarah’s message to the government is simple.
“Life tied to a machine is not really a life.
“I’m not asking for something impossible. It’s like there’s something being dangled right in front of my face and I can’t grab hold of it,” Sarah said.
“The government must talk to different people. They must talk to specialists and look at the cold, hard facts.
“This is not about the dollar; we’re talking about people’s lives here,” said Sarah.
“We just want a chance at life.”
To support Sarah and others on dialysis requiring urgent access to Soliris, sign and share the petition at https://www.change.org/p/make-soliris-eculizumab-available-for-dialysis-patients-with-ahus-in-australia.