In July 2016 NHS England announced that it would not routinely fund second stem cell transplants for patients with blood cancer or blood disorders.
We believe this is simply wrong. If a stem cell transplant is the best option for a patient, and a donor can be found, we believe the treatment should be available. We know that there are many people alive today, leading fulfilling and active lives with their families, because they had a second transplant.
In response, a number of leading doctors joined Anthony Nolan in voicing their concern in a letter to The Times, calling on NHS England to reconsider the decision. The letter can be read in full below.
To add your voice to the campaign and urge the Government to ensure every patient can access the treatment they need, you can sign our open letter to the Secretary of State for Health.
NHS England’s decision to deny funding for second stem cell transplants is of grave concern to those of us in the transplant community.
We are protesting against a misguided decision which represents a troubling step backwards for the health service in England.
It will mean that those with blood cancer or blood disorders, who have had one donor transplant already and relapsed, will be denied the treatment that offers them their best chance of survival.
With this decision, NHS England is ignoring the advice of the clinical community, thereby effectively handing most of these patients a death sentence.
Without a second stem cell transplant, many of these patients will die. With another transplant, there is hope; evidence suggests there is a one in three chance that they will achieve the milestone of five year survival.
There are many people alive today, leading fulfilling and active lives with their families, after a second transplant.
If a patient is willing to undergo the procedure, if their consultant believes a transplant is their best option, and if a donor is willing to provide their stem cells, it is devastating that NHS England will deny them a second chance of life.
We strongly urge NHS England to reconsider; another year without a resolution is unacceptable and will only mean that even more lives are lost.
Professor Charles Craddock
Director of the Blood and Marrow Transplant Unit, Queen Elizabeth Hospital, Birmingham, and Professor of Haemato-oncology, at the University of Birmingham
Dr Charles Crawley
Consultant Haematologist, Cambridge University Hospital
Professor Jane Apperley
Consultant Haematologist, Hammersmith Hospital
Professor Paul Veys
Director of the Bone Marrow Transplant Unit, Great Ormond Street Hospital
Chief Executive, Anthony Nolan
Chief Executive, Lymphoma Association
Chief Executive, MDS Patient Support
Dr Chloe Anthias
Medical Director, Anthony Nolan
Dr Angela Bowen
Consultant Haematologist, Northampton General Hospital
Dr Jenny Byrne
Haematologist, Faculty of Medicine & Health Sciences, Nottingham University Hospital
Dr Simon Hallam
Consultant in Haemato-Oncology, Barts Health NHS Trust
Professor Ann Hunter
Consultant Haematologist and Honorary Professor of Cancer Studies, Director of Stem Cell Transplantation, University Hospitals of Leicester NHS Trust
Dr Mickey Koh
Director - Stem Cell Transplantation, Consultant Haematologist/Hon Senior Lecturer, St George’s Hospital and Medical School
Professor David Marks
Consultant in Haematology and BMT, University Hospitals Bristol
Dr Fiona Miall
Consultant Haematologist & Lead clinician for lymphoma, University Hospitals of Leicester
Professor Emma Morris
Professor of Clinical Cell and Gene Therapy, UCL Institute of Immunity and Transplantation
Dr Rifca Le Dieu
Clinical Senior Lecturer, Barts Cancer Institute
Dr Jane Parker
Consultant Haematologist, Northampton General Hospital
Dr Rachel Pawson
Consultant Haematologist, Medical Director for NHS Cord Blood Bank and British Bone Marrow Registry, NHS Blood and Transplant
Dr Andy Peniket
Clinical Director of Haematology and Bone Marrow Transplantation
Dr Eleni Tholouli
Consultant Haematologist and Director of the Adult Stem Cell Transplant Unit
Royal Infirmary Manchester
Dr Kirsty Thomson
Consultant Haematologist, University College Hospital
Professor Graham Jackson
Consultant Haematologist, Newcastle Hospitals NHS Foundation Trust
Professor Robert Wynn
Honorary Clinical Professor of Paediatric Haematology and Cellular Therapy
Royal Manchester Children’s Hospital
Dr Hannah Hunter
Consultant Haematologist, Derriford Hospital, Plymouth
Dr Shankara Paneesha
Consultant Haematologist, Birmingham Heartlands Hospital
Dr Beki James
Consultant Paediatric Haematologist, Leeds Children's Hospital
Professor John G Gribben
Chair of Medical Oncology, Barts Cancer Institute
Professor Rod Skinner
Consultant in Paediatric and Adolescent Oncology, Great North Children's Hospital
Chief Executive, Bloodwise
Chief Exectuive, Leukaemia Care
Dr Sophia Skyers
Chair of the Basil Skyers Myeloma Foundation
Dr Karl Peggs
Senior Lecturer in Stem Cell Transplantation and Immunotherapy, UCL
Chair of the Chronic Myeloid Leukaemia Support Group
Dr Kim Orchard
Haematology Consultant, University Hospital Southampton
Announcing the decision, NHS England said this was among proposals that ‘are not currently affordable… these policies will be considered again next year in the relative prioritisation process for 2017/18.’
The decision means anyone with blood cancer or a blood disorder who has had one donor transplant already and subsequently relapsed will be denied the treatment that could offer them their best chance of survival.
The judgement comes despite a group of experts, including clinicians and patients, recommending second transplants are funded and a public consultation – a process which included Anthony Nolan. However, their recommendation was not accepted by NHS England.
Before 2013, patients in need of a second transplant received the potentially lifesaving treatment they needed. In the same circumstances today, these people would be denied the treatment that saved their life.
A recent study* found that of patients who receive a second transplant, one in three achieved the five-year survival milestone.
Henny Braund, Chief Executive at Anthony Nolan, said: ‘If a patient is willing to undergo the procedure, if their consultant believes a transplant is their best option, and if a donor is willing to provide their stem cells, it is devastating that NHS England will deny them a second chance of life.
‘Patients are left with only one option which is unlikely to succeed and very stressful to experience. If second transplants are not ‘routinely commissioned,’ every patient in need will be required to make their own Individual Funding Request.
‘The bar is set very high and the odds are stacked against the patient unless they can show they are an exceptional case; this will be even harder with the precedent set by the recent NHS England decision.’
Emily Wellfare, 25, a dental nurse from Eastbourne, had a second transplant in March. She said, ‘I can’t put it into words how grateful I am that I had a second transplant. It’s everything to me and my family.’
Emily knows she is lucky that her transplant went ahead, as her application for NHS funding was declined. Thankfully, her consultants argued strongly that the transplant was necessary and the hospital funded the transplant themselves.
‘Unbeknown to me, my application for a second transplant had been rejected by the NHS, even though all the doctors were saying it should go ahead and I had a good chance being cured. My doctor didn’t tell me until he’d sorted out a solution, which was kind of him - but I now realise how much he had to fight to save my life,’ said Emily.
‘I want to know why the NHS thought my life wasn’t worth fighting for. This was a treatment that could save my life, there was still hope - why didn’t they feel it was necessary to try everything possible?
‘Now I’ve had another chance at life, lots of people say, are you going to climb a mountain or do a skydive? But I just want to be normal. I see people moaning about going back to work on a Monday, and I just think, I wish I could go to work on Monday! All I want is to be with my family, to live with my boyfriend, to go on holidays, and to go back to the job I love. That’s what everyone would hope for, and it’s enough for me.’
*Ref: Orti et al (2015), ‘Outcome of Second Allogeneic Hematopoietic Cell Transplantation after Relapse of Myeloid Malignancies following Allogeneic Hematopoietic Cell Transplantation’, Biology of Blood and Marrow Transplantation.