Mother & daughter’s ongoing battle against aHUS, GOLD COAST – December 15, 2015

12039602_10153597086679675_7119732185917668468_nAt just seven months of age, Bianca, 19, Gold Coast, was diagnosed with a debilitating, ultra-rare, life-threatening disease known as atypical haemolytic uraemic syndrome or ‘aHUS’.

After being treated with two blood transfusions by hospital doctors, the disease went into remission for 17 years, allowing Bianca to lead a normal, healthy life.

That was until December 2, 2013, when her disease flared following her high-school graduation.

This is Bianca’s story, told from her mother’s perspective.

When the life-threatening blood disease attacked Bianca’s body, she was hospital-bound on and off for 3 months, with both her kidney and heart experiencing irreversible damage.

“She had a fever for a few days, but it went away. She then developed cold-like symptoms, and when her eyes and lips started to swell, we visited the GP,” explained Bianca’s mum, Tammy Hamawi.

“Bianca was given a script for hydrocortisone.

“Strangely enough, I asked the doctor if it was okay for Bianca to take hydrocortisone as she had aHUS, and thought nothing more of it,” Tammy said.

Bianca improved on this treatment, and the following day, felt completely well. A day later however, she fell violently ill. She was throwing up, had severe abdominal pain and stopped eating.

Recalling this behaviour in Bianca from when she was seven months of age, Tammy’s motherly instinct urged her to mention aHUS, when she took Bianca to Gold Coast University Hospital (GCUH) and insisted on only having a doctor that understood aHUS, to attend to her. That quick thinking meant that within two hours of Bianca being admitted to hospital, she had been diagnosed correctly, which confirmed Tammy’s worst nightmare.

“We never thought aHUS would be a part of Bianca’s life again. It came as such a shock to us, because we believed after her first attack 17 years ago, and subsequent complete recovery, that this disease would never return,” said Tammy.

Bianca was fighting for her life. She was readmitted to hospital, battling the illness as doctors continued to treat her with Plasma therapy, which sadly, never stopped aHUS attacking her organs. Bianca lost healthy kidney function to the disease in both of her kidneys in less than 20 days. From that point onwards, Bianca’s life became a living hell, with gruelling, 10-hour-long treatments each day connected to Plasma and then Dialysis.

“The type of treatment Bianca was receiving had never saved organs from failing,” Tammy said.

“The best it could do was to prolong her life, but that was no life, being hooked onto machines and receiving painful treatments that left her exhausted, depressed and with many painful reactions.”

Six weeks into the initial attack and loss of kidneys, Tammy made the drastic decision to self-fund the treatment that could potentially save Bianca’s life, and protect her organs from further irrecoverable damage.

“I went into overdrive, reading everything I could find on the internet. I knew the longer the disease was left to attack her organs, the higher the risk of them never recovering,” said Tammy.

“So we started to pay $20,000 every two weeks, to buy the fortnightly doses.”

The treatment that Tammy (with help from family, friends and the public) started to pay for, was Soliris (eculizumab) – the only available, clinically proven, yet cost-prohibitive treatment, known to save aHUS lives.

“The plasma exchange and dialysis treatments were horribly painful treatments that left Bianca in a constant state of agony, and it tore me apart to think that was all the health system was prepared to offer, when there was a known treatment, being used internationally, and with amazing results, and that treatment was also already being given to Australians, but for another ultra-rare blood disease called PNH.”

While Bianca battled the devastating illness, Tammy worked vigorously with the aHUS Patient Support Group Australia (aPSGA), to rally the government to help save Bianca’s life, and the lives of other Australians living with aHUS.

She spoke to politicians, media outlets and anyone willing to lend a sympathetic and/or influential ear to the imminent death her beloved daughter was facing without access to Soliris.

After close to a year of political lobbying, Bianca was granted three months’ worth of doses of Soliris, courtesy of QLD Health and GCUH, which continued to protect Bianca from further attack and damage to her organs, and allowed her body to heal. During this time, her general health improved. By September, 2014, Bianca had no further need for dialysis, for her kidney function was slowly returning, although they would never be returned to optimal health.

On December 1, 2014, Bianca, along with just over a handful of other Australians living with aHUS, was granted Federal Government-subsidised access to Soliris, under strict criteria.

“Since gaining subsidised access to Soliris last year, we’ve seen a marked improvement in all aspects of Bianca’s life,” Tammy said.

“She has been able to attend University to pursue her dream of studying fashion design, which would have been impossible without access to Soliris.”

Given the proven effectiveness of Soliris for Bianca, and the dire consequences, should she not receive access to the medication, she and her Mum were recently informed of her continuing access to the treatment for at least the next six months.

In the interim, Mum and daughter, along with treating doctors, will continue to rally for Bianca’s indefinite access to Soliris.

“We wish to acknowledge, and are very thankful for, the pro-active and compassionate action we are seeing from the Federal Health Minister’s office.

“Through relationship building and communication, we’re receiving a lot of positive feedback from Bianca’s doctors and QLD Health,” said Tammy.

Despite being granted extended access to Soliris, both Tammy and Bianca are continuing their plea to the Federal Health Minister and the PBAC, to grant all Australians living with aHUS, extended and ongoing access to the lifesaving treatment.

“It’s not Bianca’s, or any other patient’s fault, that they have been diagnosed with aHUS. This is a genetic disease. It’s also not the patient’s fault that Soliris is so cost-prohibitive.

“Every Australian deserves a chance at life with minimal suffering, and Soliris has granted Bianca that chance,” Tammy said.

In a direct message to The Hon. Sussan Ley MP, Tammy cited, “Ms Ley, your team and office is doing a wonderful thing by providing Soliris to Bianca. For that, I wish to thank you. You have saved our lives.

“I do urge you, however, to please continue to look after the best interests of every Australian living with aHUS, whether or not they have been granted access to Soliris, and to allow clinicians to determine whether a patient should be granted access to, or remain on, this life-saving therapy, rather than making this decision based on cost.

“Please continue to support more research into other indications for Soliris, and to foster your relationship with the manufacturer of Soliris, in order to reduce its cost,” Tammy said.

“It is in our best interests, and that our Health Department, to work proactively the pharmaceutical company that produces this life-saving treatment.

“Let’s continue to provide Australians with the most innovative treatments in our Australian hospitals, and to remain committed to maintaining our reputation for having the best health system in the world,” said Tammy.

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