Letter to the Telegraph – Pass the Medical Innovation Bill say senior oncologists, researchers and patient groups

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Letter to the editor of the Telegraph from senior oncologists, researchers and patient groups.
Letter to the editor of the Telegraph from senior oncologists, researchers and patient groups.

 

Letter to the Telegraph published today in support of the Medical Innovation Bill (Saatchi Bill) from senior oncologists, professors across numerous disciplines, cancer and rare disease CEOs, research groups, early access to medicine campaigners and patient advocates.

They ask, “Ultimately the question that must be addressed is: what can we responsibly offer to those patients for whom there are no suitable clinical trials?”

Letter to the Telegraph on Medical Innovation Bill (Saatchi Bill)

SIR – We note the successful third reading of the proposed Medical Innovation Bill (the Saatchi Bill).

While there have been significant advances in cancer treatments in recent decades, there remain areas where there has been no meaningful advance. Diseases such as glioblastoma, sarcoma or pancreatic cancer have seen no clinically relevant improvements over those decades.

While clinicians have leeway to prescribe drugs “off-label”, we know from our direct experience with patients that viable clinical options are not being used in the vast majority of “terminal” cases. When all standard therapies have failed, and there are no clinical trials available, the response is almost uniformly to move that patient into palliative care.

We do not dispute that the clinical trial is necessary in order to identify those advances that work and those that do not. However, the evidence base for medicine can come from many different sources. Data collection is a necessary corollary of increased off-label usage and the new registry included in the Bill will record information (including side-effects and outcome data) in every instance of an innovative treatment. This ground-breaking registry will enable us to analyse real-world data, thereby providing greater patient protection than exists at present.

Ultimately the question that must be addressed is: what can we responsibly offer to those patients for whom there are no suitable clinical trials?

Pan Pantziarka
The George Pantziarka TP53 Trust
Dominic Hill
Film maker & patient advocate
Professor Marc-Eric Halatsch
Professor of Neurosurgery, University of Ulm
Lydie Meheus
Managing Director, Anticancer Fund, Brussels
Dr Gauthier Bouche
Medical Director, Anticancer Fund, Brussels
Richard Gerber
Glioblastoma survivor and patient advocate
Professor Angus Dalgleish
St George’s Hospital, University of London
Professor Ahmed Ashour Ahmed
Professor of Gynaecological Oncology, University of Oxford
James Hargrave
Empower Access to Medicine
Dr John Symons
Director, Cancer of Unknown Primary Foundation
Flóra Raffai
Findacure
Professor Stephen Kennedy
Professor of Reproductive Medicine, University of Oxford
Dr Ian N Hampson
Reader in Viral Oncology, University of Manchester
Professor Andy Hall
Associate Dean of Translational Research, Newcastle University
Professor Emeritus Ben A Williams
Psychology, long-term glioblastoma survivor, patient advocate, Moore’s Cancer Center, University of California, San Diego
Dr Al Musella
President, Musella Foundation, founder The Grey Ribbon crusade: umbrella organisation for over 100 brain cancer charities
Professor John Boockvar
Director, Brain Tumor Center Lenox Hill Hospital NYC
Professor Emil J Freireich
Ruth Harriet Ainsworth Chair, Developmental Therapeutics, The University of Texas, MD Anderson Cancer Center, Houston, Texas
Brett Shockley
Patient advocate
Professor David Walker
Professor Pediatric Oncology, University of Nottingham
Laura Mancini
Clinical Scientist, National Hospital for Neurology and Neurosurgery, UCLH NHS Foundation Trust, London
John Morrissey
Adviser to the Children’s Cancer Research Fund
Stephen Western
Patient advocate, Astrocytomaoptions.com
Richard E Kast
MD, IIAIGC Study Center
Charlie Chan FRCS
Consultant Breast Surgeon
Professor Chas Bountra
Professor of Translational Medicine, University of Oxford
Dr Henrietta Morton-King
North Cumbria University Hospitals Trust
Dr Andrew Brunskill
Clinical Assistant Professor of Epidemiology and Health Services, University of Washington Seattle)
Vincent Galbiati
President & CEO of Tomorrow’s Cures Today, Washington DC
Neil Hutchison
Founder, Magic Water Pediatric Cancer Foundation, San Diego
Fiona Court
Consultant Oncoplastic Breast Surgeon, Cheltenham
Professor Alastair Buchan
Head of the Medical Science Division and the Dean of the Medical School at the University of Oxford
Dr Georgios Evangelopoulos
Patient advocate, lawyer & political scientist
Professor John Yarnold
Professor of Clinical Oncology at The Royal Marsden and Institute of Cancer Research
Professor Jerome H Pereira
Consultant General & Oncoplastic Breast Surgeon, Norwich Medical School University of East Anglia
Dr Lynne Hampson
Non Clinical Lecturer in Oncology, Institute of Cancer Sciences, Manchester
Dr Robert Kirby
Senior Lecturer, Hospital Dean, University Hospitals of North Midlands
Professor Gareth Evans
Professor of Medical Genetics and Cancer Epidemiology, University of Manchester
Dr Rupert McShane
Coordinating Editor Cochrane Dementia and Cognitive Improvement Group, Oxford University
Michael Shackcloth
Consultant Thoracic Surgeon, Liverpool Heart and Chest Hospital
Professor Vikas P Sukhatme
Professor of Medicine, Harvard Medical School, Co-founder Global Cures
Vidula Sukhatme
Co-founder Global Cures
Sarah Lindsell
CEO, The Brain Tumour Charity
Neil Dickson
Chairman, The Brain Tumour Charity
Alex Smith
Founder, Harrison’s Fund
Giles Cunnick
Consultant General & Breast Surgeon, Bucks Healthcare NHS Trust
Dr Piers Mahon
Biotech Consultant
Paul Fitzpatrick
Chairman, Duchenne Now
Dr David Faurrugia
Consultant Oncologist, Cheltenham General Hospital
Dr Chris Govender
Medical Officer in Addictions
Sue Farrington Smith
Chief Executive, Brain Tumour Research
Professor Steven Gill
Professor in Neurosurgery, University of Bristol

 

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