Question to the Department of Health and Social Care:

To ask His Majesty's Government in light of the proposal contained in the National Cancer Plan for England for the appointment of a national lead for rare cancers, what is the name of (1) the employing body and paymaster, and (2) the governance body responsible for the appointment; what is the expected management line of the post-holder by job title; whether the role is to be full-time or part-time: and what are the expected contracted or Full-Time Equivalent weekly hours.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

The National Cancer Plan, published on 4 February 2026, sets out several commitments and ambitions, to be delivered within the next 10 years.

This includes appointing a national clinical lead for rare cancers, to sit on the National Cancer Board and advise on delivery of actions in the rare cancers chapter of the plan, and a National Institute for Health and Care Research National Specialty Lead for Rare Cancers to support delivery of research on rare cancers, as part of implementation of the Rare Cancers Act.

Responsibility for supporting the role of the national clinical lead for rare cancers, including governance and renumeration, will reside with the Department and NHS England.

Selecting the national clinical lead for rare cancers requires an appropriate appointment process. NHS England and Department officials are following public appointment procedures, including drafting a job specification, determining contract length, weekly hours, renewal and review details, probation terms, and line management.

Until the appointment is made, NHS England’s Clinical Advisory Group has leads for specific rare cancers.

Question to the Department of Health and Social Care:

To ask His Majesty's Government, in relation to proposed appointment of a national lead for rare cancers, what is the expected term length of the appointment in months; what are the proposed the contract start and end dates; and what are the details of any renewal, review, or probation points with corresponding dates.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

The National Cancer Plan, published on 4 February 2026, sets out several commitments and ambitions, to be delivered within the next 10 years.

This includes appointing a national clinical lead for rare cancers, to sit on the National Cancer Board and advise on delivery of actions in the rare cancers chapter of the plan, and a National Institute for Health and Care Research National Specialty Lead for Rare Cancers to support delivery of research on rare cancers, as part of implementation of the Rare Cancers Act.

Responsibility for supporting the role of the national clinical lead for rare cancers, including governance and renumeration, will reside with the Department and NHS England.

Selecting the national clinical lead for rare cancers requires an appropriate appointment process. NHS England and Department officials are following public appointment procedures, including drafting a job specification, determining contract length, weekly hours, renewal and review details, probation terms, and line management.

Until the appointment is made, NHS England’s Clinical Advisory Group has leads for specific rare cancers.

Question to the Department of Health and Social Care:

To ask His Majesty's Government what are the interim leadership arrangements until the national lead for rare cancers takes up their post, including the name or title of the accountable post holder and the start date.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

The National Cancer Plan, published on 4 February 2026, sets out several commitments and ambitions, to be delivered within the next 10 years.

This includes appointing a national clinical lead for rare cancers, to sit on the National Cancer Board and advise on delivery of actions in the rare cancers chapter of the plan, and a National Institute for Health and Care Research National Specialty Lead for Rare Cancers to support delivery of research on rare cancers, as part of implementation of the Rare Cancers Act.

Responsibility for supporting the role of the national clinical lead for rare cancers, including governance and renumeration, will reside with the Department and NHS England.

Selecting the national clinical lead for rare cancers requires an appropriate appointment process. NHS England and Department officials are following public appointment procedures, including drafting a job specification, determining contract length, weekly hours, renewal and review details, probation terms, and line management.

Until the appointment is made, NHS England’s Clinical Advisory Group has leads for specific rare cancers.

Question to the Department of Health and Social Care:

To ask His Majesty's Government what assessment they have made of the consequences for patients with mantle cell lymphoma of NICE’s decisions not to recommend (1) brexucabtagene autoleucel, and (2) acalabrutinib with bendamustine and rituximab; and what steps they plan to take to resolve the uncertainties identified in the evidence to support the use of brexucabtagene autoleucel, given that its use has not been recommended, and it will therefore not add to further data.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

The National Institute for Health and Care Excellence (NICE) is an independent body and develops its recommendations in line with its established processes on the basis of an assessment of clinical and cost effectiveness. It is right that these decisions are made independently on the basis of the available evidence, and the Government has no plans to intervene in NICE’s decisions. Companies may, however, bring forward further evidence or revised commercial proposals for future consideration through NICE’s established processes.

The Government recognises that the potential withdrawal of brexucabtagene autoleucel as a treatment for future patients with mantle cell lymphoma will be concerning for patients and their families, but it is important to note that final guidance has not yet been published and an appeal is ongoing. In line with an arrangement between NHS England and the company, if NICE’s final guidance does not recommend use, patients who started treatment during the managed access period can continue their treatment.

NICE has recently consulted on its draft guidance that does not recommend acalabrutinib in combination with bendamustine and rituximab for the treatment of untreated mantle cell lymphoma. NICE will take the comments received in response to the consultation fully into account in developing its final guidance.

Question to the Department of Health and Social Care:

To ask His Majesty's Government what assessment they have made of whether high-impact therapies that are the last line of curative potential for rare cancers are disadvantaged by standard appraisal models; and what plans they have to establish a dedicated review mechanism for such treatments.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

The Department has no current plans to establish a dedicated review mechanism for rare cancer treatments. Most medicines, including for rare cancers, are assessed through the National Institute for Health and Care Excellence’s (NICE) standard technology appraisal programme, with a small number of treatments for very rare and severe conditions considered through the highly specialised technologies programme, which applies a higher cost effectiveness threshold.

NICE’s methods are suitable for evaluating treatment for rare cancers where prices are set fairly. NICE completed eight technology appraisals of medicines for the treatment of rare cancers between April 2025 and April 2026 and was able to recommend them all for some or all the eligible patient population.

We are also investing approximately 25% more in innovative treatments through an increase to NICE’s cost-effectiveness threshold and changes to how health benefits are valued. This will support access to medicines delivering significant health benefits, including for rare diseases, that may previously have been declined on cost-effectiveness grounds.

Question to the Department of Health and Social Care:

To ask His Majesty's Government what assessment they have made of the impact of NICE not recommending treatment options around expanding access to innovative therapies for rare cancer patients.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

The Department has no current plans to establish a dedicated review mechanism for rare cancer treatments. Most medicines, including for rare cancers, are assessed through the National Institute for Health and Care Excellence’s (NICE) standard technology appraisal programme, with a small number of treatments for very rare and severe conditions considered through the highly specialised technologies programme, which applies a higher cost effectiveness threshold.

NICE’s methods are suitable for evaluating treatment for rare cancers where prices are set fairly. NICE completed eight technology appraisals of medicines for the treatment of rare cancers between April 2025 and April 2026 and was able to recommend them all for some or all the eligible patient population.

We are also investing approximately 25% more in innovative treatments through an increase to NICE’s cost-effectiveness threshold and changes to how health benefits are valued. This will support access to medicines delivering significant health benefits, including for rare diseases, that may previously have been declined on cost-effectiveness grounds.

Question to the Department of Health and Social Care:

To ask His Majesty's Government, further to the Written Answer by Baroness Merron on 24 March (HL15339), whether they have plans to discuss with the charity Anthony Nolan the potential for children and young people with non-malignant conditions, who travel long distances to receive stem cell transplants and chimeric antigen receptor T-cell therapy, to be included in the new travel cost scheme.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

Through the National Cancer Plan for England, the Government is committing up to £10 million a year to a new fund open to all children and young people in England with cancer and their families regardless of income, to support them with the cost of travelling to and from their treatment. This commitment sits alongside wider action to transform cancer care for children and young people.

The Department is currently working with its partners to define the scope and parameters of the scheme and further detail will be announced in due course.

Currently, the National Health Service runs schemes in England to provide financial assistance for travel to a hospital or other NHS premises for specialist treatment or diagnostics tests, following referral from a primary healthcare professional. The Healthcare Travel Costs Scheme provides financial assistance to patients in England who do not have a medical need for transport, but who require assistance with the costs of travelling to receive certain NHS services. The Non-Emergency Patient Transport Services provide funded transport where it is considered essential to ensuring an individual’s safety, safe mobilisation, condition management, or recovery.

Question to the Department of Health and Social Care:

To ask His Majesty's Government, further to the Written Answer by Baroness Merron on 4 March (HL14721) indicating a substantial underspend in the Innovative Medicines Fund, what steps they are taking to expand managed access pathways for innovative medicines, including disease-modifying treatments for Alzheimer’s disease such as Lecanemab and Donanemab.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

NHS England cannot comment on the proportion of the Innovative Medicines Fund’s budget that has been spent on medicines made available through managed access agreements. Due to the low numbers of patients who receive these highly specialised treatments, publishing this information risks confidentiality of pricing.

The National Institute for Health and Care Excellence (NICE) is able to recommend any medicine, including for the treatment of Alzheimer’s disease, for a period of managed access through the Innovative Medicines Fund where it concludes that it is plausibly cost effective and the collection of real-world evidence may resolve clinical uncertainty. NICE concluded in its draft guidance on lecanemab and donanemab that neither treatment was suitable for a period of managed access but has not yet published its final guidance. There are no current plans to expand the circumstances in which NICE is able recommend medicines for managed access.

Question to the Department of Health and Social Care:

To ask His Majesty's Government, further to the Written Answer by Baroness Merron on 4 March (HL14721), what proportion of the Innovative Medicines Fund budget has been spent on medicines made available through managed access agreements.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

NHS England cannot comment on the proportion of the Innovative Medicines Fund’s budget that has been spent on medicines made available through managed access agreements. Due to the low numbers of patients who receive these highly specialised treatments, publishing this information risks confidentiality of pricing.

The National Institute for Health and Care Excellence (NICE) is able to recommend any medicine, including for the treatment of Alzheimer’s disease, for a period of managed access through the Innovative Medicines Fund where it concludes that it is plausibly cost effective and the collection of real-world evidence may resolve clinical uncertainty. NICE concluded in its draft guidance on lecanemab and donanemab that neither treatment was suitable for a period of managed access but has not yet published its final guidance. There are no current plans to expand the circumstances in which NICE is able recommend medicines for managed access.