Proud mom of Christian Dierkx
I am a proud and caring mom to two boys. My husband and I work to together to be advocates for our son Christian and other families with MPS-II.
When Christian was two years old (mid 2009) we approached his metabolic doctor and together we applied for Elaprase enzyme replacement therapy (ERT) for Christian. Shortly after he was approved for treatment a port-a-cath was installed to allow access. He commenced treatment shortly thereafter. Christian was one of the youngest patients in the world to be treated with Elaprase ERT and he was doing well.
Removed from LSDP
After two and a half years into his treatment, we had just landed back in Australia from overseas when we were told by his treating doctor that his ERT would be stopped. A letter of explanation from the Australian Life Saving Drugs Program followed shortly thereafter.
Campaign began to have Elaprase reinstated
My husband and I decided we cannot sit idly by and let our son suffer. We decided to use our professional experiences and my husband’s legal knowledge to commence a campaign to overturn the decision. We first appealed the decision in February 2012 using a lawyer but the appeal was rejected by the LSDP. We then decided to appeal directly to the Federal Health Minister, she wrote back to us stating ‘she will get back to us as soon as practicable”. Five months went by and we heard nothing from the minister. Meanwhile we were emailing and calling the minister’s office. We then decided to fight further using the media, our local Federal MP, our Advocate groups, MPS society and others.
After all the public outcry of our case, the Minister still failed to respond to our letter. We made the decision to seek legal advice and were willing to take the matter to the Federal Court of Australia if that became necessary. We asked our lawyers to examine whether Elaprase Eligibility guidelines were in breach of the Australian Disability Discrimination Act of 1992 and we also began to do our own research.
Decision overturned and his Elaprase reinstated
From our research we believed the guidelines were in breach of the ( Act) and this was later confirmed by our Lawyers. We wrote to the Minister once more expressing our understanding of the Act and stated the guidelines needed to be reviewed as we believe they discriminate against people with CNS involvement. Three weeks later, the Minister wrote to tell us Christian’s treatment was reinstated. There were no conditions assigned no contracts applied to the reinstatement. It was a long and hard fought battle but we had the decision overturned and many have called the decision unprecedented in Australia.
We knew getting Christian back on Elaprase (intravenous) was important firstly to stabilize his physical symptoms but also because we could not be eligible for Intrathecal clinical trials (elaprase going to the brain) until the issue was resolved.. Getting back ERT for Christian was round one of our fight for Christian!