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Advocacy

The UK Myeloma Society advocates on behalf of healthcare professionals to improve access to treatments for our patients.  The society nominates clinical experts that are involved in all stages of the NICE appraisals process, providing feedback on draft scoping documents, attending workshops and appraisal meetings.  We are keen to involve patients and patient and carer groups in consultation processes and work closely with Myeloma UK to achieve this.  A summary of recent NICE appraisals where we have advocated on behalf of the clinical community are listed below.

We also advocate in other areas such as working towards stream-lines treatment pathways and ensuring state of the art diagnostics for all patients in the UK.

One of the UKMRA’s central aims is to generate supportive and substantive evidence to inform better care for myeloma patients in the NHS. For this goal, the UKMRA is working jointly with the UKMS Pathway Optimisation Group, which performs rolling, long-term horizon scanning and demand signalling to identify areas of unmet patient need and evidence requirements for improved access. The UKMS Pathway Optimisation group also utilises alternative commissioning routes, where evidence is not suitable or eligible for evaluation via the main, commercial route via NICE. Through their joint strategy, UKMRA and UKMS therefore develop forward-looking, patient-focussed access strategies for patients with myeloma in the UK and elsewhere. In case of any queries about the Pathway Optimisation Group, please contact martin.kaiser@icr.ac.uk .

Daratumumab with lenalidomide and dexamethasone for untreated multiple myeloma when stem cell transplant is unsuitable

Technology appraisal guidance [ID4014] Expected publication 25 October 2023

 

Daratumumab with bortezomib and dexamethasone for previously treated multiple myeloma (TA897) June 2023

 

Daratumumab monotherapy for treating relapsed and refractory multiple myeloma (TA783) April 2023

 

Ixazomib with lenalidomide and dexamethasone for treating relapsed or refractory multiple myeloma (TA870) February 2023

 

Daratumumab in combination for untreated multiple myeloma when a stem cell transplant is suitable (TA763) February 2022

 

Lenalidomide maintenance treatment after an autologous stem cell transplant for newly diagnosed multiple myeloma (TA680) March 2021 

 

Carfilzomib with dexamethasone and lenalidomide for previously treated multiple myeloma (TA587) June 2019

 

Carfilzomib for previously treated multiple myeloma (TA695) April 2021

Isatuximab with pomalidomide and dexamethasone for treating relapsed and refractory multiple myeloma [Review of TA658] [ID4067]

  • Available via CDF
  • NICE appraisal ongoing


Belantamab mafodotin for treating relapsed or refractory multiple myeloma after 4 or more therapies [ID2701]

  • Consultation on suggested remit, draft scope and provisional stakeholder list of consultees and commentators

Carfilzomib with daratumumab and dexamethasone for treating relapsed or refractory multiple myeloma [ID2709]

  • Following on from advice received from the company the timelines for this appraisal remain to be confirmed.
  • Further information regarding the scheduling of this appraisal will be available in due course.

Selinexor with bortezomib and low-dose dexamethasone for treating relapsed refractory multiple myeloma [ID3797]

  • Timelines for this appraisal are to be confirmed. Further information regarding the scheduling of this appraisal will be available in due course.

Ciltacabtagene autoleucel for treating relapsed or refractory multiple myeloma [ID3816]

  • Following on from information received from the company, NICE has decided to suspend this appraisal from its current work programme. The timelines for this appraisal are to be aligned with the latest regulatory and UK launch expectations and further information regarding the scheduling of this appraisal will be available in due course.

Idecabtagene vicleucel for treating relapsed and refractory multiple myeloma in people who have received at least 3 prior therapies [ID1442]

  • On hold

Based on information available on NICE website (https://www.nice.org.uk/search?q=myeloma&gst=In%20development)

Dr Neil Rabin

Chair

Read Biography

Dr Karthik Ramasamy

Communications lead

Read Biography

Dr John Ashcroft

Past Chair

Read Biography

Prof Gordon Cook

Dean of College of Myeloma

Read Biography

Dr Martin Kaiser

Read Biography

Annual Report

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About Us

Find out more about the UK Myeloma Society.

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Dr Neil Rabin

Chair

Consultant Haematologist. University College London Hospitals & North Middlesex University Hospital

Dr Neil Rabin is a consultant haematologist with a specialist interest in myeloma and plasma cell disorders at University College London Hospital (UCLH) and North Middlesex University Hospital, as well as Honorary Associate Professor at University College London (UCL). He graduated from University College London Medical School, and completed his postgraduate training in London. He was awarded a PhD from University College London for his work investigating novel therapies for myeloma bone disease, prior to taking up his consultant post.

In his current role he works within the large myeloma team at UCLH where he is responsible for the myeloma autologous stem cell programme. He is principal and co-investigator on several studies evaluating new treatments for myeloma, both at diagnosis and in relapse. He on the trial management committee of national trials and is a member of the UK Myeloma Research Alliance. He is actively involved in training and education and was until recently Training Programme Director for Haematology (North Central London).

Dr Rabin has been on the Executive Committee of the UKMF since 2013 and is the current Chair. He has particular interest in advocacy and promoting the care of patients at a national level

Dr Karthik Ramasamy

Communications lead

Karthik Ramasamy MBBS, FRCP, FRCPath, PhD

Karthik Ramasamy is a Consultant Haematologist at Oxford University Hospitals NHS Trust and Associate Professor of Haematology, Radcliffe Department of Medicine, Oxford UK. Dr Ramasamy is the Director of the Oxford Myeloma Translational Research Centre https://oxford-myeloma.org.uk, and a Lead Clinician for myeloma and other plasma cell dyscrasias at the Thames Valley Cancer Alliance Group. He is the Divisional Lead for Cancer research for National Institute for Health Research, Clinical Research Network Thames Valley and South Midlands, UK. Since 2021 Karthik chairs the NIHR Haem Onc and Lymphoma oversight group. He is an Executive member of the UK Myeloma Forum and is an active member of UK Myeloma Research Alliance. Karthik serves on the Myeloma UK Board, a patient charity exclusively dealing with myeloma advocacy and research. Dr Ramasamy completed his haematology training in London. Following this, he completed three years as a clinical research fellow working on bone marrow microenvironment in myeloma at King’s College London. Dr Ramasamy is a Chief Investigator of national myeloma studies and his translational research interests are early diagnosis of myeloma with current Medical research council and cancer research UK funding, bone disease and myeloma drug resistance mechanisms. Karthik has published over 100 papers and authored textbooks/ chapters on myeloma.

Academic Interests

Early diagnosis of myeloma and its precursor states: Collaborators – Prof C Schofield (Chemistry, Oxford), Prof Guy Pratt (Univ of Birmingham), Dr Ross Sadler (Oxford University Hospital), Prof Kassim Javaid ( Botnar Research Centre, Oxford University)

Pathophysiology and clinical management of myeloma induced bone disease: Collaborators – Prof K Javaid and Dr C Edwards (Botnar Research Centre, Oxford University)

Development of drug resistance and characterise the BM microenvironment in myeloma:

Collaborators – Prof Udo Oppermann ( NDORMS, Oxford), Prof Anjan Thakurta (NDORMS, Oxford), Dr Sarah Gooding ( WIMM, Oxford) , Prof Paresh Vyas ( WIMM, Oxford)

Dr John Ashcroft

Past Chair

John trained at Cambridge University qualifying in 1992. Following Junior Doctor training in East Anglia he moved to Leeds as a Specialist Registrar in Haematology where he completed both training and his PhD studying bone disease and how the underlying systems can be targeted to both prevent and reverse bone destruction.

John has been a Consultant Haematologist in Leeds and Mid Yorkshire NHS Trusts since 2005 and holds Honorary Senior Lecturer positions in the Universities of Leeds and York alongside his role as Mid Yorkshire Trust Research Director. His main research interests are multiple myeloma and bone disease. He is the UK Chief investigator for the ongoing bone study comparing Denusomab© and Zoledronic Acid, a member Trials management groups of other Uk studies including NCRI Myeloma X and the upcoming Myeloma XII trials and has contributed to the most recent UK Myeloma Guidelines

Professor Gordon Cook

Dean of College of Myeloma

Professor of Haematology & Myeloma Studies, Consultant Haematologist

St James Institute of Oncology, Leeds Teaching Hospitals, Leeds, UK

I am a graduate of the University of Glasgow School of Medicine. I received my higher professional training in haematology in the West of Scotland. After completion of my PhD, I was appointed as a consultant Haematologist in the West of Scotland before moving to take up my present post based at Leeds Teaching Hospitals, in 2002.

I run a small peer-review grant-funded basic research group with areas of interests in transplantation and tumour immunology.

I am currently the President of the British Society of Blood & Marrow Transplantation. I represent the transplant society at the Government strategic and national commissioning level. I am a member of the NCRI Haematology-Oncology Clinical Studies Group. I am the secretary of the United Kingdom Myeloma Forum (UKMF) and have represented the interests of myeloma clinicians and patients in NICE reviews. I am a member of the NCRI Haem-Onc Myeloma sub-group and Principal Investigator for NCRI Myeloma X. In addition, I am a Board member of Myeloma UK and Medical Editor of Myeloma Today.

Dr Martin Kaiser

Martin Kaiser is a Clinician Scientist at The Institute of Cancer Research and Honorary Consultant Haematologist at The Royal Marsden Hospital London. He trained in medicine and haematology in Germany and joined the ICR and RMH in 2011. His research focuses on molecular biomarker discovery and target identification for stratified treatment in myeloma, with a focus on molecular high-risk disease. He also has a major interest in novel imaging approaches in myeloma. Martin leads a number of multi-centre clinical trials in myeloma, including one of the first stratified trials for high-risk myeloma. His laboratory performs central genetic and molecular analyses for a number of national clinical trials. He is Translational Lead for the UKMRA.