Vimizim4Morquio – The Campaign

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Vimizim4Morquio – The Campaign

 

1. In 2009 the first ever person infused with Vimizim was in the UK.

2. 235 people took Vimizim during the clinical trial. This is equivalent to 10% of the World population of Morquio

3. In 2013, Government abandoned the expert body AGNSS which previously advised on specialist treatments and in April 2013 NHS England become responsible for specialised commissioning

4. April 28th 2014 #Vimizim4Morquio was licensed by the European Medicines Agency (EMA) following scientific evaluation

5. 28th Oct 2014 NHS England’s CPAG meeting took place using a non-consulted scorecard to make treatment reimbursement decisions. This scorecard discriminated against rare diseases

6. November 28th 2014 – 10 year old boy with Morquio legally challenges NHS England over discriminatory scorecard used to decide his future treatment.

7. NHS England go back to the drawing board admitting process was discriminatory. Read more here.

8. 9th December MPS Society, MDUK, families affected by Morquio and Duchenne Muscular Dystrophy and Greg Mulholland meet Minister George Freeman. NHS England do not attend. Read more here.

9. 18th December 2014 MPS Society, MDUK, Greg Mulholland and respective pharma companies meet with George Freeman. NHS England do not attend

10. 20th January 2015 Greg Mulholland leads Parliamentary debate on Drug Funding for Rare Diseases. Read more here.

11. Jan 2015 NHS England launch process on consultation which unfortunately lacks detail, methodology and transparency. Consultation ends 27th April 2015. Read more here.

12. 4th Feb Greg Mulholland asks the PM to act urgently. Read more here.

13. Keep Sam Smiling delivering his school’s letters to No. 10 made BBC ‘Week in pictures’

14. 27th February TSA and MPS Society launch video with David Suchet.Watch the video here.

15. 28th February 2015 following lack of engagement from NHS England Phama Company give notice that they cannot keep providing free treatment indefinitely without timescales when a decision is going to be made.

16. May 12th 2015 (over a year since Vimizim was licensed) is given as an end date for Vimizim.

17. 6th March 2015 pharma company respond to NHS England’s threat of legal action. Read more here.

18. Following Greg Mulholland’s question to David Cameron, DC suggests that he can’t see why there can’t be continuity of care (only if pharma pay for it which will exclude those who weren’t on the clinical trial). Read more here.

19. 10th March 2015 Protest 

20. 26th March 2015 MPS Society, MDUK, TSA, Joining Jack, Action Duchenne, Greg Mulholland attend meeting with George Freeman – NHS England do not attend

21. Letter sent to George Freeman highlighting the failures of NHS England 

22. HSJ article Headline ‘Drug policy delay led to ‘absolute preventable’ deaths. Read the full article here.

23. MPS Society and Action Duchenne Protest outside Downing St ‘No one is home no one is listening’

24. HSJ article – Exclusive: NHS England labelled ‘dysfunctional’ over drug policy delay and misleading government ministers. Read the article here.

25. HSJ article ‘Dysfunctional NHS England slammed over prescribing ‘fiasco’

26. HSJ article ‘Doctors in open letter to NHS England warn of ‘preventable deaths’ due to drug access policy delays’. Read article here.

27. Those who were on the clinical trial have 3 weeks left until Vimizim treatment starts to be withdrawn

28. What does it mean to Keep Sam Smiling? 

29. Those not on the clinical trial have been waiting a year for treatment

30. Open letter from Lily May who was diagnosed too late to be part of the clinical trial 

31. David Cameron has been asked about access to Vimizim on camera on two separate occasions. Watch here.

32. It is now being reimbursed in more than 10 European countries even though the clinical trial was pioneered in the UK

33. Policy failures and children and young adults suffering the consequences is just not right.

34. During our campaign period the 100k genome project was launched to identify rare conditions. Will they fund trials for treatments for these conditions and then fund them afterwards?