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UsPress Release 06/04/08
MPs & Leading TV Doctor Call On NICE To Overturn Their 'Serious Error' To Prevent Removal Of Established Life Saving Drugs For Severely Ill Patients
MPs this week claimed that NICE had ‘gone against its own rules’ in looking to restrict established life saving & enhancing drugs for severely ill patients with a rare lung disease and urged them to develop a better dialogue with the pharmaceutical industry to ensure the NHS is getting a better deal on drug purchases
This request came about further to a Westminster Hall Debate focusing on the issues currently facing patients with the life threatening lung disease, Pulmonary Hypertension (PH)
Several MPs raised issues relating to the overall costs of PH drugs and their comparatively cheaper costs in other countries. Nick Ainger MP reflected on his experience of assisting in the importation of a PH treatment from the USA for a constituent which, although manufactured here in the UK, was an eighth of the price that the NHS were being asked to pay. He and his Parliamentary colleagues called on NICE to work more closely with the Pharmaceutical industry to resolve such anomalies.
PARLIAMENTARY INQUIRY
Prior to the Westminster Hall Debate a Parliamentary Inquiry, led by Nick Ainger MP learnt that NICE propose:
- 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 will Clinicians be able to move the patient to 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.
“If the NICE guidelines are implemented in their current form we will see the removal of a series of treatments which are keeping 75% of people with the lung disease Pulmonary Hypertension alive longer and providing 83% of them with a fair to good quality of life. We believe this is the first time that NICE will have removed a class of drugs that has no alternative. ”Says Paul Pennington from PHA-UK. “We are grateful to the Under Secretary for Health, Ann Keen for agreeing to meet Nick Ainger and a delegation from PHA-UK to discuss central funding for all 6 PH specialist centres in England, following the highly successful model of PH services for Children at Great Ormond Street Hospital. This may then produce another route via the power of collective negotiation, so that the costs of these treatments might be reduced. "
A ‘DEATH SENTENCE’
Iain Armstrong, PH Nurse Consultant at Sheffields Royal Hallamshire Hospital 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.”
DR CHRIS STEELE MBE
Pulmonary Hypertension Association UK (PHA-UK) patron Dr Chris Steele from ITV’s This Morning said on the steps of 10 Downing Street when, together with a delegation from PHA-UK , he handed in 32,000 names in a petition gathered by members of PHA-UK in just two and a half weeks.
“We are urging NICE to think again and consider the submissions that have been made by all sides of the PH community in response to their preliminary recommendations. This guidance, if implemented, will result in unnecessary deaths, devastation to families and increased costs to the NHS through increased emergency admissions, hospital stays and extra care.” He added, “The treatment of Pulmonary Hypertension in the UK through the 8 specialist centres in London, Sheffield, Newcastle, Cambridge and Glasgow is the envy of the world, a real NHS success story for us to be proud of. If NICE get their way then we will fall behind every other country in the developed world in treating this disease.”
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
MEDIA CONTACTS:
PHA-UK Press office on 020 7272 3915 Or 07711 181 374
media@pha-uk.com
For a full backgrounder on PH follow this link:
http://www.pha-uk.com/downloads/PHA_background_information.pdf
