December 1, 2014 marked a very important day in Australia. That was the day their government finally started providing access to the life-saving drug Soliris (eculizumab) for some patients with aHUS in Australia. This has saved lives. But according to policy, those who started Soliris last December will be forced to stop their treatments at the end of November (after 12 months) unless their aHUS is active. That will likely be everyone as Soliris effectively shuts off the disease making their aHUS inactive.
Then what will happen next is some (or all) will have their aHUS become active again forcing a relapse. aHUS can attack at any time. There is no cure, there is only an effective treatment with the drug Soliris. aHUS patients in Australia can’t afford to “see what happens” by having their treatments stopped.
There may be no long term data yet on Soliris for treating aHUS but rather than stopping after 12 months and letting a relapse occur that will cause permanent damage to major organs (kidneys, heart, or brain) or even death, they should continue the Soliris until research shows it’s not the solution. Many experts in the US recommend Soliris be taken for life. There is much more data on Soliris in the US than in Australia as their government has only recently started funding it. And there are other countries besides the US like Spain, France, Germany, Russia, Netherlands, and Italy that are providing access to Soliris long term. England also this year ruled that Soliris is the only effective drug for treating aHUS and they are now be providing Soliris for their aHUS patients immediately and long term.
Not only are there patients coming off Soliris at the end of November, but there are those in need of a kidney transplant because they did not have access to Soliris and they lost all of their kidney function. In order to get a successful kidney transplant they need to be on Soliris. And with the shortage of organs in Australia for donation, we can’t afford those current restrictions as they will put newly transplanted organs at risk. A transplanted kidney will be destroyed by aHUS without long term access to Soliris.
Please help me help our Australian friends by signing the online petition to convince The Honorable Sussan Ley, MP, Health Minister of Australia, to not force our friends to stop their Soliris treatments.
And of course it never hurts to email your personal plea to the Health Minister.