Bianca- 17, urgently needs the drug Soliris to stop her immune system from destroying her heart, brain and kidneys (aHUS). In real time, Bianca's kidneys are slowly shutting down- while within grasp, the drug Solaris, for approximately $18,000/ wk for 4 weeks, then $24,000/ fortnight, indefinitely, can halt this cascade effect and save her kidneys.
Bianca Scott, now suffering from aHUS, became very sick two weeks after completing year 12 (December 2013), and remains in hospital to date. Bianca's kidneys have since very quickly deteriorated- her heart is also straining, and her life has shrunk remarkably. There are two treatment options available for aHUS:
1. Plasma Exchange & Dialysis/ ISO While this approach slows down the deterioration process, plasma & dialysis are lengthy intrusive therapies with serious side effects that do not mitigate against kidney failure; and,
2. Soliris a drug also with side effects, but stops the auto-destructive immune system and stabilises the kidneys.
Bianca presently spends up to 9 hours per day undergoing dialysis & plasma exchange, and more recently ISO treatment. She needs high doses of antihistamines and steroids to counter the effects of plasma & dialysis, these too tax her kidneys, that are still- and inspite of her intensive treatment, steadily deteriorating. More importantly, kidney transplant is not an option with Bianca's aHUS genetic mutation.
aHUS- plasma & dialysis/ ISO or Soliris?
1. In aHUS, long term plasma and dialysis will not mitigate against kidney failure.
2. Should Bianca’s kidneys fail, Bianca's aHUS strain makes her a poor candidate for kidney transplant.
3. The drug Soliris, the only available medication to halt Bianca’s kidneys from deterioration, would free young people like Bianca from the shackles of the 9 hour / day plasma & dialysis therapy- which barely sustains their basic body function. The mostly young sufferers of this disease under these protracted and taxing therapies have one career, hanging to dear life, dependent on healthcare and welfare.
4. The cure Soliris, administered first weekly for 4 weeks and then fortnightly in ~ 45 minutes, has been shown to stabilise aHUS and specifically kidney damage. Presently, Soliris uniquely shows this level of efficacy in stopping auto-immune melt down seen in aHUS. This drug however is not available under the pharmaceutical benefit scheme PBS, and at the cost of ~ $500,000 per year, remains prohibitively expensive.
5.The drug Soliris will free Bianca and other predominantly young aHUS sufferers to live as integrated members of the community capable to reciprocate through employment and social interaction.
We have two pleas. Please help us fund this drug to save Bianca Scott from the perils of aHUS now? Bianca’s heart and kidneys cannot wait till March, at which time the government will consider Solaris’s case and whether it fulfils the criteria to become available under the Life Saving Drug Program LSDP. Every day's delay brings higher danger to Bianca. Please give us a solution.
But also, please help save all aHUS sufferers and make the drug available to those who desperately need it under the LSDP?
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