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Petition for UK Government Funding for the drug Soliris |
1599 Signatures |
Published by PNH Patients UK on Jul 30, 2008
Closed on Sep 26, 2008
Closed on Sep 26, 2008
Category: Health
Region: United Kingdom
Target: Gordon Brown, Prime Minster; Dawn Primarolo, Health Minister, the NHS
Web site: http://pnhlondon.wordpress.com
Result:
We were able to achieve a favourable decision from the government. The Department of Health are funding two PNH treatment centres in the UK and Soliris for PNH patients who clinically need it.
Thank you so much for all your support.
Thank you so much for all your support.
Description/History:
Soliris is the first drug of its kind to treat the symptoms of Paroxysmal Nocturnal Haemoglobinuria, a rare and serious haemolytic anaemia. It has been developed and run in trial in the UK, North America and other European countries for the past four years and is extremely successful in symptom management of PNH.
Patients in the United Kingdom are now being told that this drug and specialist clinics may not be funded by the NHS for the small number of patients who need it because of the high cost of the drug. Health and lives are being measured against cost effectiveness.
The UK is currently the only country not to fund Soliris for patients after it has been licensed.
Without Soliris, patients are chronically ill. Soliris ensures management of symptoms and quality of life for PNH sufferers.
Please go to http://pnhlondon.wordpress.com for more details.
The above blog gives insight, from a patient's perspective, into the success of Soliris as symptom management medication and the improvement in the quality of basic life for PNH patients.
We ask Health Minister, Dawn Primarolo to:
(a) accept the medical advice of the consultants who were researchers on the trial in their recommendation of Soliris as a treatment management drug for PNH;
(b) accept the results of the trial studies to date, all of which support the vast improvement of quality of life for PNH patients;
(c) expand the provision of Soliris to patients who were not on the original trial to ensure access to humane health care to PNH suffers in the UK.
Patients in the United Kingdom are now being told that this drug and specialist clinics may not be funded by the NHS for the small number of patients who need it because of the high cost of the drug. Health and lives are being measured against cost effectiveness.
The UK is currently the only country not to fund Soliris for patients after it has been licensed.
Without Soliris, patients are chronically ill. Soliris ensures management of symptoms and quality of life for PNH sufferers.
Please go to http://pnhlondon.wordpress.com for more details.
The above blog gives insight, from a patient's perspective, into the success of Soliris as symptom management medication and the improvement in the quality of basic life for PNH patients.
We ask Health Minister, Dawn Primarolo to:
(a) accept the medical advice of the consultants who were researchers on the trial in their recommendation of Soliris as a treatment management drug for PNH;
(b) accept the results of the trial studies to date, all of which support the vast improvement of quality of life for PNH patients;
(c) expand the provision of Soliris to patients who were not on the original trial to ensure access to humane health care to PNH suffers in the UK.
Petition:
We, the undersigned, residents and citizens of the UK, believe that the NHS should fund the drug Soliris to UK Paroxysmal Nocturnal Haemoglobinuria patients.
We call on the National Commissioning Groups, the NHS, the Health Minister, Dawn Primarolo and the Prime Minister, Gordon Brown to take this opportunity to demonstrate leadership in ensuring basic health care and quality of life for PNH patients. We ask the Government to the end of the postcode lottery for NHS care.
We call on the National Commissioning Groups, the NHS, the Health Minister, Dawn Primarolo and the Prime Minister, Gordon Brown to take this opportunity to demonstrate leadership in ensuring basic health care and quality of life for PNH patients. We ask the Government to the end of the postcode lottery for NHS care.
The Petition for UK Government Funding for the drug Soliris petition to Gordon Brown, Prime Minster; Dawn Primarolo, Health Minister, the NHS was written by PNH Patients UK and is hosted free of charge at GoPetition.
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