DON’T MAKE FOOLS OUT OF US
April Fools’ Day protest
Date: 1st April 2015
Location: Downing Street
Time: 10am – 4pm
Wear Bright Colours / Jester Hats / Funky Hats
The MPS Society alongside other patients organisations have been working tirelessly to raise awareness for the failings of NHS England and are pushing for interim funding whilst they sort out their debacle of a commissioning process.
The licensed drug Vimizim received its marketing authorisation in April 2014 and since then NHS England has failed to put in place arrangements to reimburse the treatment in order to make it available to all those with MPS IVA Morquio.
The UK led on the clinical trial and to date the treatment is available in over 20 other countries including France, Germany, Czech Republic and Hungary.
With the support of Greg Mullholland MP who has asked three questions in the House, as well as coordinating a joint letter signed by a number of MPs to the Prime Minister and tabling an EDM demanding funding for rare disease treatments we are still making little progress.
It cannot be right that NHS Englands’ lack of process is making patients suffer the consequences of permanent deterioration, pain, suffering and early death.
Therefore, the MPS Society along with Action Duchenne and other charity organisations will be organising a rally opposite Downing Street on April 1st. This date is key as it was when we were initially expecting funding for Vimizim had NHS England’s commissioning process been fit for purpose. From this date onwards every day that Vimzim remains unavailable lifelong deterioration is occurring for our children and young adults with Morquio.
Whilst this issue is no laughing matter, this date is also April Fool’s Day, giving us the opportunity to say to NHS ENGLAND- YOU CAN’T MAKE FOOLS OUT OF US!
LEND YOUR SUPPORT TO THE APRIL FOOLS DAY CAMPAIGN
1. Tweet your pictures, messages and satire to @DrBruceKeogh (Medical Director of NHS England) @Freeman_George (Minister for Life Sciences). The more creative the better! #nolaughingmatter #fundourdrugsNOW #translarna. Contact your MPs and encourage them to tweet their support!
2. Come along to the rally opposite Downing St. We recommended Jesters Hats to tie into the April Fool’s Day Theme and catch public attention.
Please note if your child’s school has not broken up for Easter holidays on 1st April we are not encouraging that they attend the protest during school hours unless permission has been given by the school.
Any questions regarding this protest, please contact Charlotte on 0345 389 9901 or email firstname.lastname@example.org