At a recent meeting of the Access to Cancer Medicines Coalition (ACMC) on 24th June, the group was joined by two external speakers from the National Institute for Health and Care Excellence (NICE) and NHS England:

  • Heidi Livingstone, Senior Public Involvement Advisor from NICE, spoke about the forthcoming changes to NICE’s processes and methods to improve meaningful patient/public involvement in health technology appraisals for new medicines. These changes are part of the continuous improvement of NICE’s technology appraisal and highly specialised technology appraisal methods and processes. Various workshops involving patient groups have taken place this year and the outcomes of these workshops fed back in to NICE’s methods and processes. Early engagement with patients will take place this summer via a questionnaire to patient groups, and the public consultation will take place in summer 2020. NICE expects to update it’s manuals by December 2021. Some key issues identified include; information collection and synthesis; how patient evidence fits into modelling and health economics; understanding committee decision-making and patient impact; and understanding outcome and having feedback on patient impact.


See Heidi’s presentation here: Improving Patient Involvement in NICE’s TA and HST Methods and Process Review

  • Rob Fernley, Cancer Drugs Fund, NHS England spoke about the progress of the new Cancer Drugs Fund (CDF) since its inception in July 2016. The objectives of the new CDF are faster access to new treatments, stronger value for money for taxpayers, and a fast-track route to most promising drugs when companies price responsibly. Since July 2016, 33,400 patients have received treatment via the CDF, and 75 drugs treating 147 different cancer indications have been funded by the CDF. Rob then showed the increase in positive appraisal outcomes for cancer drugs after introduction of the new CDF, and used CAR-T as an example of how well the CDF is working.


See Rob’s presentation here: Access to Cancer Medicines Coalition – CDF Update

The group discussed the following items with respect to access to medicines:

  • NICE methods and process review for technology appraisals and highly specialised technologies and is ongoing and will be going for public consultation next summer 2020.
  • NICE consultation on the data and analytics statement of intent NICE is looking to broaden the types of evidence it uses to develop guidance and evaluate its effect. This includes looking in more detail at real world data, audits, patient registries and patient surveys. NICE has produced a Statement of Intent which sets out the ways which they already use data and how they plan to extend it in the future. There is now a consultation on this document on the NICE website. Closing date is Friday 13 September.


Members provided a summary of their access to medicines priorities. KCSN reported on our involvement in the NICE approval of first-line ipilimumab/nivolumab combination for the Cancer Drugs Fund, the Scottish Medicine’s Consortium (SMC) approval of first-line ipilimumab/nivolumab for use in NHS Scotland, and our involvement in the forthcoming appraisals of pembrolizumab/axitinib and avelumab/axitinib combinations for first-line treatment of metastatic RCC.

Please let us know if you would like to contribute to this group by sharing any issues you have experienced or are experiencing with respect to accessing the treatment you need for your kidney cancer (