The UK Pulmonary Hypertension Association (PHA-UK) was concerned for patients’ lives when NICE published guidance to withdraw a number of medications for PH in March 2008.
The draft guidance stated that intravenous epoprostenol and inhaled iloprost are not recommended in treatment of PH in adults.
While bosentan and sitaxentan are only recommended if sildenafil is contraindicated.
Clinicians from PH specialist centres and friends of the UK PH community from around the world joined the association in creating a petition of 32,000 signatures. This was delivered to Downing Street, which led to parliamentary investigation and Westminster debate.
Iain Armstrong, chairman of PHA-UK, said: ‘In the past decade treatments have transformed the way in which this condition is treated – 75% of patients are now alive two years after diagnosis. I am not being over dramatic when I say that if the preliminary recommendations from NICE had been carried out, it would have been a sentence of death for a significant number of the PH patient community.’
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