Vimizim update – 19th December 2014

Greg Mulholland MP meets with Minister for Life Sciences to discuss Vimizim

Without the Brown’s hard work and Suzanne Mallah’s son’s legal challenge the conversations pushing for fair access to treatments for rare diseases would not have reached as far as they have. The Minister told the MPS Society, Dr Chris Hendriksz and BioMarin along with Greg Mulholland that a further meeting will be arranged in early January with representatives from NHS England.

Whilst we are grateful that the conversations are continuing, there is still a lot of uncertainty. We expected a decision on the 16th December and NHS England still lack a non-discriminatory decision making process for treatments for ultra-rare diseases. For every week a Morquio sufferer does not receive the drug, the disease does permanent damage which is why any delay even by a matter of weeks is detrimental to individuals health.

We urge NHS England to consider an interim funding decision whilst a fair decision making process is developed. If you would like to be involved in the campaign please contact Charlotte at c.roberts@mpssociety.org.uk