Asked by: Bob Blackman (Conservative - Harrow East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he has taken to encourage higher donor registration among mixed ethnicity donors to the UK stem cell and bone marrow register.
Answered by Helen Whately - Shadow Secretary of State for Work and Pensions
Since 2011 the Department has provided over £26.8 million in financial support to NHS Blood and Transplant and Anthony Nolan to enable the establishment of a unified United Kingdom Stem Cell Registry and improve access to, and outcomes of, stem cell donation.
This includes improving equity of access to unrelated donor stem cell transplantation for all ethnicities, including those with mixed ethnicities, through targeted recruitment to the UK Stem Cell Registry. Anthony Nolan have established a taskforce dedicated to engaging with supporters from minority ethnic backgrounds, including those with mixed ethnicities, which will co-create content and recruitment campaigns that serve and resonate with target audiences. Additionally, they are working closely with partners – such as the African Caribbean Leukaemia Trust and the Rik Basra Leukaemia Campaign - to focus recruitment in ethnically diverse areas of the UK, and to target recruitment on currently under-represented groups.
Asked by: Bob Blackman (Conservative - Harrow East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he has taken to encourage higher donor registration among (a) all people and (b) mixed ethnicity donors to the UK stem cell and bone marrow register.
Answered by Helen Whately - Shadow Secretary of State for Work and Pensions
Since 2011 the Department has provided over £26.8 million in financial support to NHS Blood and Transplant and Anthony Nolan to enable the establishment of a unified United Kingdom Stem Cell Registry and improve access to, and outcomes of, stem cell donation. This includes improving equity of access to unrelated donor stem cell transplantation for black, Asian and minority ethnic (BAME) patients through targeted recruitment to the UK Stem Cell Registry.
There are now 1.6 million donors on the UK’s aligned stem cell registry which is part of a worldwide network of 76 stem cell registries, which list over 36 million donors worldwide and co-operate to match donors to patients across the globe.
Current funding includes very specific stipulations about the numbers of newly registered bone marrow donors, and the proportion of umbilical cords stored in the UK Cord Blood Bank that must be from BAME backgrounds (35-40%). There are now 1.6 million donors on the UK’s aligned stem cell registry and the proportion of BAME donors in the UK registry has gone up from 11% to 14% between 2014 and 2019. In 2018, 22% of newly registered potential donors were from BAME backgrounds.
Asked by: Martyn Day (Scottish National Party - Linlithgow and East Falkirk)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what treatment options are available to patients with multiple myeloma who have become refractory to previous lines of therapy.
Answered by Jo Churchill
For patients who have received previous lines of treatment, the National Institute for Health and Care Excellence (NICE) currently recommends the following subsequent treatments in England:
- Daratumumab with bortezomib and dexamethasone (NICE TA573);
- Carfilzomib (NICE TA 457);
- Bortezomib (NICE TA 129); and
- Ixazomib with lenalidomide and dexamethasone (NICE TA505).
For some patients, stem cell transplantation may also be considered, however, the treatment is very intensive and requires a good level of fitness.
Asked by: Gareth Thomas (Labour (Co-op) - Harrow West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to (a) raise awareness of the need for stem cell donations from the BAME communities and (b) encourage more people to join the stem cell donor register; and if he will make a statement.
Answered by Caroline Dinenage
Since 2011 the Department has provided over £26.8 million in financial support to NHS Blood and Transplant and Anthony Nolan to enable the establishment of a unified United Kingdom Stem Cell Registry and improve access to and outcomes of stem cell donation. This includes improving equity of access to unrelated donor stem cell transplantation for black, Asian and minority ethnic (BAME) patients through targeted recruitment to the UK Stem Cell Registry.
Current funding includes very specific stipulations about the numbers of newly registered bone marrow donors, and the proportion of umbilical cords stored in the UK Cord Blood Bank that must be from BAME backgrounds (35-40%). There are now 1.6 million donors on the UK’s aligned stem cell registry and the proportion of BAME donors in the UK registry has gone up from 11% to 14% between 2014 and 2019. In 2018, 22% of newly registered potential donors were from BAME backgrounds.
Asked by: Chris Ruane (Labour - Vale of Clwyd)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 9 July 2019 to Question 273333 on Stem cells: donors, what the targets are for the proportion of donors that must be from BAME backgrounds.
Answered by Caroline Dinenage
Since 2011 the Department has provided more than £26 million in financial support to NHS Blood and Transplant and Anthony Nolan to enable the establishment of a unified United Kingdom Stem Cell Registry and improve stem cell donation. This includes improving equity of access to unrelated donor stem cell transplantation for Black Asian Minority Ethnic (BAME) patients through targeted recruitment to the UK Stem Cell Registry. This funding is in addition to the recruitment campaigns run by NHS Blood and Transplant, Anthony Nolan and other partners
In 2017 the Department funded recruitment for 6,000 extra donors from BAME background and continues to fund recruitment of genome-typed BAME donors who are then much more likely to donate. Working collaboratively to recruit more BAME donors with our partners, 22% of donors recruited in 2018-19 were of BAME background.1
As part of the funding outlined above an Umbilical Cord Blood bank has been established. In its funding contribution the Department has set specific targets about the proportion of donors that must be from BAME background which is at least 35% and this target is being met.
1 https://www.anthonynolan.org/sites/default/files/State_Of_The_Registry_201819.pdf
Asked by: Chris Ruane (Labour - Vale of Clwyd)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to increase BAME recruitment to the stem cell registry.
Answered by Caroline Dinenage
Since 2011 the Department has provided over £26.8 million in financial support to NHS Blood and Transplant and Anthony Nolan to enable the establishment of a unified United Kingdom Stem Cell Registry and improve access to and outcomes of stem cell donation. This includes improving equity of access to unrelated donor stem cell transplantation for black, Asian and minority ethnic (BAME) patients through targeted recruitment to the UK Stem Cell Registry and the Department has set specific targets about the proportion of donors that must be from BAME backgrounds.
Asked by: Julian Knight (Independent - Solihull)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to encourage organ donation.
Answered by Jackie Doyle-Price
I refer the hon. Member to the answer I gave to the hon. Member for Solihull on 9 April 2019 to Question 240020.
A number of steps are being taken, including the implementation of the UK-wide ‘Taking Organ Transplantation to 2020’ Strategy (2013); the introduction of the Organ Donation (Deemed Consent Act) 2019 from 2020 which will introduce a new system of consent for organ and tissue donation in England; a 12-month communication campaign, launched by NHS Blood and Transplant on 25 April 2019, to raise awareness of these changes and the options available under the new system; and, from 2020, teaching of the science relating to blood, organ and stem cell donation in all state-funded primary and secondary schools.
Shortages of organs for transplant are relevant to people from all backgrounds but are particularly acute for black, Asian and minority ethnic (BAME) patients, who are more likely to need an organ transplant. It is for this reason the Department launched a campaign in July 2018, delivered by NHS Blood and Transplant, with support from the National Black, Asian, Mixed Race and Minority Ethnic Transplant Alliance, to raise awareness and break down barriers to donation within these communities. A Community Investment Scheme was also launched and in January 2019, 25 projects were successful in sharing £140,000 in funding to break down myths and barriers and increase support for organ donation among BAME communities. Organisations representing Jain, Sikh, Hindu, Muslim, Swahili, black and Asian Christians, black African and Caribbean and multi-faith groups received funding for their projects.
A toolkit is available to help hon. Members engage locally which includes details of the resources available to support such engagement. This is available at the following link:
Asked by: Tanmanjeet Singh Dhesi (Labour - Slough)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to engage with BAME communities on stem cell donations.
Answered by Jackie Doyle-Price
Since 2011 the Department has provided more than £26 million in financial support to NHS Blood and Transplant and Anthony Nolan to enable the establishment of a unified United Kingdom Stem Cell Registry and improve stem cell donation. This includes improving equity of access to unrelated donor stem cell transplantation for Black African Minority Ethnic (BAME) patients through targeted recruitment to the UK Stem Cell Registry and the Department has set specific targets about the proportion of donors that must be from BAME backgrounds.
Asked by: Rosie Cooper (Labour - West Lancashire)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, why my constituent’s stem cell treatment for MS has been halted due to NHS England’s decision to no longer allow GPs to refer patients for the treatment.
Answered by Caroline Dinenage
NHS England first published its commissioning policy in 2013, revised in 2015, which permits access to autologous haematopoietic stem cell transplant (HSCT) as a clinical option for some patients with multiple sclerosis (MS). The commissioning policy is available at the following link:
As with any HSCT there are risks to the procedure and when considering this treatment for patients with MS the balance of risk and benefit must be carefully assessed for each patient. Neurologists and transplant doctors in the United Kingdom are guided by the recommendations of the European Society for Blood and Marrow Transplantation, published in 2012, and the guidance of the British Society of Blood and Marrow Transplantation when considering the suitability of transplant. These criteria restrict the use of autologous HSCT to a small group of MS patients with high levels of inflammatory activity despite one or more approved disease modifying therapies and very rare patients with 'malignant' forms of MS. Patients should be assessed by both MS and transplant specialists.
Neurologist and transplant doctors should be guided by these recommendations and decisions related to a patient’s care are a matter for clinicians.
Asked by: Rosie Cooper (Labour - West Lancashire)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, for what reason Ms Helen Townsend’s Stem Cell treatment for MS was halted part way through as a result of NHS England's decision that GPs can longer refer people for the treatment and that patients must now be referred by a MS Neurology Specialist.
Answered by Caroline Dinenage
NHS England first published its commissioning policy in 2013, revised in 2015, which permits access to autologous haematopoietic stem cell transplant (HSCT) as a clinical option for some patients with multiple sclerosis (MS). The commissioning policy is available at the following link:
As with any HSCT there are risks to the procedure and when considering this treatment for patients with MS the balance of risk and benefit must be carefully assessed for each patient. Neurologists and transplant doctors in the United Kingdom are guided by the recommendations of the European Society for Blood and Marrow Transplantation, published in 2012, and the guidance of the British Society of Blood and Marrow Transplantation when considering the suitability of transplant. These criteria restrict the use of autologous HSCT to a small group of MS patients with high levels of inflammatory activity despite one or more approved disease modifying therapies and very rare patients with 'malignant' forms of MS. Patients should be assessed by both MS and transplant specialists.
Neurologist and transplant doctors should be guided by these recommendations and decisions related to a patient’s care are a matter for clinicians.