A letter published on the Irish MPS Society website on 20 July confirms that the HSE has decided to refuse funding for Vimizim in Ireland. The letter states that “due to lack of clinical data and a perceived lack of value for money” the HSE has made this surprising decision despite the UK experience of nearly 50 children and young adults showing there is robust clinical evidence outlining the benefits of access to Vimizim.
The Group Chief Executive for the MPS Society in the UK, Christine Lavery said:
“It is impossible to understand how two out of the three children in Ireland who have benefited from the new drug Vimizim for MPS IVA Morquio are being denied treatment. We would see this as discriminatory that HSE have chosen to treat just one child with no clinical rational. In England nearly 50 children and young adults are benefiting from Vimizim under a Managed Access Agreement between NICE and NHS England. We hope the HSE sees the error of their ways and treat the other two children with the compassion they have shown to Grace Cogan.”
The MPS Society are also aware of other children and adults in Ireland who would potentially be eligible for this life changing treatment. It is beyond belief that given Vimizim is widely available across Europe the HSE have taken this backward looking stance. Perhaps most frustratingly for Irish families, if they were to live only a few miles North they would be able to access Vimizim in Northern Ireland. It is shocking that the HSE have deemed that there is insufficient clinical evidence when other countries have been able to approve access based on the same level of data.
The HSE needs to act now to make this treatment available for all.
For any Irish patients who are concerned please get in touch with the Irish MPS Society in the first instance.