APPG Hearing on access to medicines hearing

APPG Hearing on access to medicines hearing

On Wednesday 28th April 2021 the All-Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions gathered together virtually for a hearing on access to medicines.

Speaking on behalf of the sickle cell community, our Chair of Trustees, Kye Gbangbola, gave a talk on access to medicines and the affect on people living with sickle cell. His talk covered topics including prescription charges, the lack of new treatments (or treatments not being approved), patients being denied acute and chronic care, and COVID-19.

Kye’s talk can be seen below (6:10-12:34)

APPG Hearing on access to medicines hearing from Genetic Alliance UK on Vimeo.

The meeting was opened by Liz Twist MP (APPG Chair) and also saw presentations and Q&As from:

  • Kate Learoyd, National Society for Phenylketonuria
  • Lord Bethell, Parliamentary Under Secretary of State (Minister for Innovation)
  • Emily Crossley, CEO & Co-Founder, Duchenne UK
  • Jess Hobart, Trustee, UK Mastocytosis Support Group
  • Roanna, Board Member and Patient Advocacy Lead, UK Thalassaemia Society
  • Meindert Boysen, Deputy Chief Executive and Director of the Centre for Health Technology Evaluation, NICE