What incredible strength.
May Ali is an aspiring artist. She has two young daughter’s and a loving husband.
May had a “bright” future ahead of her. But in July 2014, May’s “healthy and active” life was turned on it’s head, as she was diagnosed with autoimmune conditions Sjogren’s Syndrome and Myositis.
On Change.org May writes, “my condition deteriorated rapidly, puzzling my specialists as my symptoms intensified and began affecting multiple organs.” May’s deteriorating health brought her close to death on mulitple occasions. “I also became severely disabled,” she says. “Unable to sit, walk and feed myself. I required full-time care and medical attention.”
In addition to her preexisting conditions, May was eventually diagnosed with atypical haemolytic uremic syndrome (aHUS). May explained to The Project team, the condition causes “lots of minute blood clots that attack all of the bodies organs, including the brain, the heart, the kidneys, and the liver.”
Watch May’s full interview with The Project below:
As a last hope, May was prescribed Eculizumab. “This drug literally saved my life,” writes May. “Allowing me to be reunited with my family and friends after a harrowing five months in hospital.” She told The Project the drug inhibits the part of her immune system that attacks her organs.
The aHUS resource centre states that the condition is life-threatening, but “you and your healthcare team can work together to manage the disease once it has been diagnosed.”
Therein lies the problem.
The medication is extremely expensive costing approximately $500,000 per annum without government subsidy. For the last year, May’s Eculizumab treatment has been subsidised by the PBS.
But last Thursday, that all changed. May told The Project her application was rejected because the condition is not “actively” attacking her organs. But May believes Eculizumab, the drug she can no longer afford, is the reason for her current state of relative health.
Acting Chief Medical Officer Dr Tony Hobbs has since issued a statement, which states that is May Ali’s health deteriorates at all she will be “re-initiated on treatment immediately”.
So May, and other Australian sufferers of aHUS, can only stay on their medication, if their health is deteriorating.
Obviously, it is a system that is far from ideal.
May is urging everyone to sign her petition, approach local politicians and lobby for the continuation of subsidisation. When explaining just how much this would mean for her and her family, May broke down.
She composed herself to reveal that there are approximately 70 aHUS sufferers in Australia, and not all have access to the life-saving drug. She said 67% of aHUS sufferers who are not on Eculizumab die with in a year.
“I am doing this for my family,” said May.
“They should be very, very proud of you,” said Project host Waleed Aly putting out the call for viewers to support the campaign.
Top Comments
The current recommendation is 6-12 months therapy and that it can be stopped if the disease is in remission.
http://ndt.oxfordjournals.o...
This is why the media should keep out of science.
While this is true for the average person with auto-immune haemolytic uraemic syndrome, May has a very rare (as far as I'm aware undocumented) variation of this disease. Whilst this approach of treatment is reasonable for many, it is not appropriate (and could be a death sentence) for May considering her unique variant. As a medical doctor myself I understand that uniform approaches to healthcare are generally necessary, but in this particular case (and no doubt many others) individual factors need to be taken into account. The cost of an ICU bed as a result of relapse and associated dialysis and transplant would likely be significantly more costly for the government than the cost of this medication until it's patent runs out in 2017 and it is more affordable.
Successful treatment is not the same as remission. The point is that, given the severity and combination of May's conditions, application of this policy is likely to cause irreversible damage if not death. Minister Sussan Ley is on public record saying that a sufferer of this condition should not be denied treatment against the wishes of their medical team, which is exactly what is about to happen to May. As a PhD-qualified medical researcher I agree that the media often misunderstand or misrepresent science. But the media are also able to inform the public when it is politicians misunderstanding the science, as is happening here. I urge people to sign May's petition.