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UsHow we told NICE ‘Hands Off PH Treatments’
PHA-UK delegation handing in the petition containing 32,000 names to 10 Downing Street, April 2nd 2008. A high resolution version is available by clicking here.
Latest News
April 6th 2009
NICE announces that a significant number of commentators were of the view that NICE could not add value by continuing its appraisal. This was because NHS specialised commissioners have now put in place agreed arrangements for the supply of targeted therapies for all patients affected at the most severe stages of the condition. The Institute discussed the result of this consultation with the Department of Health (DH) and Ministers have agreed that this topic should be removed from the work programme. Thus bringing to an end of the NICE process.
The Story So Far
March 3rd 2008
The National Institute of Health and Clinical Excellence (NICE) published an Appraisal Consultation Document on treatments for Pulmonary Arterial Hypertension. (To view the NICE appraisal document click here.)
Had these recommendations been implemented it would have seen the removal of a whole class of drugs used to treat Pulmonary Hypertension. All sides of the PH community agreed that this would be a huge step backwards.
Taking the Fight to Westminster
April 2nd 2008
Thanks to PHA-UK trustee and leader of the All Party Parliamentary Group on PH, Nick Ainger MP- and a small army of fellow trustees and supporters, a series of activities took place at Westminster to highlight our concerns surrounding the NICE proposals. This included a stakeholder investigation (click here to access the stakeholder report) and Parliamentary debate (click here to view the Westminster Hall debate).
A fantastic effort by our members and supporters from across the world meant that a PHA-UK delegation, led by our patron Dr Chris Steele, was able to deliver a petition containing 32,000 signatures to 10 Downing Street- calling on NICE to change their stance.
Click on any of the photos above to access a short video made as part of the ‘Hands off’ PH treatments campaign
November 5th 2008
Following intense lobbying, , from all sides of the PH community NICE effectively ‘scrapped’ their preliminary recommendations and following consultation with the Department of Health have proposed restarting the process with a new scope of appraisal- which would only look at classes 1 to 3 of the disease. Click here to read the NICE communication.
PHA-UK believe that this appraisal should not be happening. We feel that the National Commissioning Document, published in July 2008, while not perfect, makes clear provision for high-quality care and management of PH- so there is no reason for NICE to undertake another costly appraisal at this stage.
November 25th 2008
PHA-UK formally responded to NICE, lodging it’s objections based on the views of over 600 members who took part in the imPHAct survey. We are also grateful, once more, to the clinicians from the PH specialist centres for their invaluable perspective and support.
We Still Need Your Help
The cost of managing this campaign has been considerable and we need your help to continue our fight. PHA-UK is dependent on the generosity of it’s supporters. Any donation that you can make will be greatly appreciated.
Click here for details of how you can donate online or by post.
Media Enquiries
Call the PHA Press office on 0207 272 3915 or email media@phassociation.uk.com
For background information on PH click here to visit our media centre.
