On December 1, 2014, the small aHUS Australian community celebrated with the PBS listing of Soliris (eculizumab) through Section 100: Highly Specialised Drugs Program for those who meet certain criteria, and the earmarking of $63 million in treatment funding over the next four years.
Since then, our celebrations have begun to sour, as aHUS patients currently accessing life-saving treatment face the loss of such allegedly between the end of October to December 2015, as the government introduces its “let’s see what happens” mandate, by demanding patients come off treatment after only one year.
We are therefore continuing to ‘our plea for life’ to the government, by providing all Australians living with aHUS with lifetime access to Soliris.
A young Australian who is at-risk of losing subsidised access to Soliris at the end of October this year is six year old Esme from Perth, Western Australia. Here, her mother, Esme, reflects on her experience with the life-saving treatment today, and renews her appeal to the government to save her daughter’s life.
Esme is in Year one this year, and has really been enjoying school and making friends.
My husband, Andrew and I have both been really pleased with her growing confidence and her academic and social achievements, which is probably what most parents wish for their child in primary school.
We were actually extremely fortunate, because Esme was granted access to Soliris in May 2010, when she was 15 months old.
I truly believe that being able to have this medication has saved Esme’s life, and has allowed her to develop like most normal healthy children, both physically and mentally.
She’s been able to attend Kindergarten and pre-primary, like any other child going through the early school years.
Apart from the fortnightly trip to the Children’s Hospital for her Soliris infusion, Esme has been able to participate in the normal activities associated with school.
I’ve had conversations with other mothers at school who have said they would not have known Esme had such a serious health condition because she appears to be like any other typical kid in school, developing an occasional cold or sniffle.
Being on Soliris has given our beautiful girl a normal quality of life.
With her Soliris treatments being scheduled to stop by the end of October, I fully expect that her aHUS will be activated when her immune system starts to fight any infection that she may contract. Andrew and I are both dreading this time, because it represents a looming deadline for our child to begin what, in our opinion, is an unnecessary medical decline into possible kidney failure and hospitalisation.
As parents, it is very difficult to accept that our child’s health is being knowingly risked due to the Australian government’s failure to follow medical recommendations that other countries like America have no problems in accepting and implementing.
I wish to ask our new Health Minister, The Hon. Sussan Ley MP, and other officials, to put themselves in our shoes.
How would you feel knowing that your healthy child is going to be denied access to a medication that has proven to work so well for her, and given her a full and rich life over the past five years?
How would you feel knowing that your child will probably need a long hospitalisation, and attain possible permanent damage to her kidney, liver and/or heart when her aHUS is triggered again?
How would you, your spouse or older child cope with the impact of caring for a very sick child, together with the knowledge that this situation could have been prevented?
How will you cope with having to tell your child that they will have to stop the medicine that makes them stay healthy and strong?
These are the issues and questions that my husband and I will have to deal with in the very near future. It is very real for us, and it is something we would not wish upon anyone to endure.
Yes, Esme is among the extremely rare number of Australians living with this chronic aHUS disease, but I do not imagine that her life is of any less value than that of other Australians who are not battling this devastating disease.
We are not asking the government for a miracle cure, because for us, Soliris represents that miracle cure.
Rather, we implore the government to make our miracle cure available to Esme, so that she can live a long and healthy life.”