On 21 October 2019, Genetic Alliance UK launched our Action for Access report which lays out recommendations for moving forward the dialogue on access to rare disease medicines.
The APPG on Rare, Genetic and Undiagnosed Conditions, chaired by Catherine West MP, met to discuss problems within the current system – Health technology assessment (HTA) – used for deciding which medicines become available through the NHS, and the proposed solutions.
The meeting included emotive insights from parents of children affected with rare conditions and spurred interesting discussions around how the recommendations from the Action for Access report could be implemented. Guest speakers included:
- Nick Meade, Director of Policy at Genetic Alliance UK
- David Ramsden, Cystic Fibrosis Trust
- Kate Learoyd, National Society for Phenylketonuria
- Dr Chris Kingswood, Consultant Nephrologist and Head of Research Strategy, Tuberous Sclerosis Association
The detailed minutes for the meeting can be accessed below.