Perth mother, May Ali, who lives with aHUS as well as a combination of autoimmune disorders, including necrotising autoimmune myopathy (NAM), is continuing to praise the fact that she was granted access to Soliris, which she attributes her life to.
May was granted continued access to Soliris in December, 2015, however, just a few weeks after regaining access to this treatment, May experienced a relapse of NAM, which she feared might jeopardise the stability of her aHUS.
“When my necrotising autoimmune myopathy (which basically means death of my muscles) relapsed I believe, had I not had access to Soliris, I would have seen a flare in my aHUS,” said May.
When May was diagnosed with aHUS, her doctor had informed her that the cause was directly linked to ramifications of her NAM.
“After relapsing I knew that because my NAM had triggered my aHUS, without having access to Soliris, I would have been in serious danger,”
“When my NAM became worse my family were very relieved that I had been granted access to Soliris because they knew that without it I may have been at serious risk,” May said.
In order to gain access to her NAM treatment, May was required to apply for approval, which was not confirmed until January 22, 2016.
Currently, May is in a stable condition, however, after this almost fatal experience her motivation to fight for the right of all those living with aHUS is in full swing.
“In 2016, I will be continuing to work with my science and medical connections in Australia, in attempts to amend the government criteria that limits the access Australians living with aHUS have to Soliris, because right now I believe it is unethical and I believe it needs to change,” said May.
Federal MP The Hon. Eleni Evangel, on February 10, 2016 approached May seeking to participate in any future movements to help Australians living with aHUS win the right to gain access to their lifesaving treatment.
“We need to make sure that those who are not eligible to get the treatment gain access, and those who already have access are doing all that they can to help the fight for our basic human rights,” May said.
Along with the aPSGA, May is continuing to lobby government to #saveaHUSlives by providing ongoing access to Soliris to Australians living with aHUS, who require it.