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DERBYSHIRE’S ONE IN A MILLION WOMAN HELPS SPEARHEADS WESTMINSTER CAMPAIGN TO TELL ‘NICE HANDS OFF TREATMENTS FOR LITTLE KNOWN DISEASE THAT CAN KILL ALMOST THREE QUARTERS OF SUFFERERS BEFORE THEY RECEIVE TREATMENT.
Amanda Henchliffe (36) from Belper in Derbyshire is one of 4000 people across the UK whose lives have been affected by the potentially fatal condition, Pulmonary Hypertension (PH). On, Wednesday the 2nd of April, Amanda joined Dr Chris Steele from ITV’s This Morning and a delegation from the Pulmonary Hypertension Association UK (PHA-UK) to deliver a 32,000 signatures in a petition to 10 Downing Street as part of a concerted campaign being mounted by the PHA-UK to try and over turn a series of recommendations made by the National Institute Health and Clinical Excellence (NICE) who are trying to change the way the life threatening lung disease is treated.
Paul Pennington from PHA-UK said, "We are so grateful to Amanda, she has played such an important role in our campaign and has raised vital awareness of this life threatening diseas through the video film she made with us and the media activity she and her family have given up there time to get involved with. At our recent national conference I was deighted to present her with one of our Special Emphasis Awards in recognition of the extra-ordinary efforts she has made to help others with this condition both here in thre UK and across the world.
IMPROVED SURVIVAL, BETTER QUALITY OF LIFE YET NICE SET TO ‘THROW AWAY HOPE’
Despite 75% of PH patients living longer and 83% enjoying a better quality of life, established life saving treatments would be withdrawn from the NHS if NICE guidance on the treatments for the life threatening lung disease Pulmonary Hypertension (PH) are implemented, a new Parliamentary Inquiry report launched today (16.00hrs 2/04/08) has revealed. (Embargoed report attached)
The Parliamentary inquiry, led by Nick Ainger MP leader of the All Party Parliamentary Group on PH, learnt that if NICE’s recommendations (published 3rd of March 2008) are implemented the first line treatment for PH in future would be the cheapest drug, Sildenafil (also known as Viagra). Only if Sildenafil fails or it is unsafe to use in the first place will they be able to move the patient onto the more expensive oral treatment options of Bosentan or sitaxentan. The most advanced treatments available, the prostacyclins, a series of treatments generally reserved for the sickest of patients that have been used successfully within the NHS for over 15 years would not be available for patients in future. MP’s heard that there is no treatment alternative to the prostacyclins for patients who do not respond to the oral therapies and that heart and lung transplants are not a viable alternative, due to the lack of available organs. Experts couldn’t find an example where a life saving treatment, with no pharmaceutical alternative, was removed from the NHS on NICE’s recommendation.
FROM TOP OF THE WORLD TO BOTTOM OF THE LEAGUE
All the experts providing evidence agreed that treatment and care for PH in the UK is the envy of world and a huge NHS success story. Fears were expressed that alongside the costs of lives, one of the consequences of the NICE guidance would be that the countless millions of pounds invested by the NHS in developing services for patients with PH at the 8 Specialist Centres across the UK could be squandered and one of the fastest growing areas of development in specialised healthcare in the UK, could be set back generations.
A ‘DEATH SENTENCE’
Iain Armstrong, PH Nurse Consultant and Chairman of the patient support charity the Pulmonary Hypertension Association UK (PHA-UK) who provided evidence to the Inquiry stated, “PH affects around 2,000 people in England and Wales requiring targeted therapy. It is difficult to diagnose, as the primary symptom is breathlessness, a common symptom of many more common conditions. Therefore it typically takes approximately two years from initial symptoms to diagnosis. Without treatment, 50% of patients would be dead within a further two years. However, treatments have transformed the way in which PH is treated – over recent times 75% of patients are now alive two years after diagnosis. I am not being over dramatic when I say that if these recommendations from NICE are carried out, it is a sentence of death for some people with PH.”
Amanda Henchliffe is available for interview via the PHA-UK Press Office 020 7272 3915 media@pha-uk.com
For a full backgrounder on PH follow this link:
http://www.pha-uk.com/downloads/PHA_background_information.pdf
100 MPs have so far signed Early Day Motion 1173 and an adjournment debate arranged by Nick Ainger MP took place between 9.30 - 11am in Westminster Hall on the 2nd of April 2008.
Notes To Editors
PHA-UK (charity number 1120756) provides support, understanding, and information for all those people whose lives are touched by Pulmonary Hypertension (PH). By bringing people together, and providing a focus for everyone throughout the UK and around the world, PHA-UK aims to make the lives of patients, relatives and carers easier and more able to cope with the challenges that PH imposes.
To find out more about PH visit the Pulmonary Hypertension Association UK's website www.pha-uk.com or contact our Helpline 0800 3898 156
