Support for IPOPI position statements

Access to immunoglobulin therapy for PID patients 

PID UK supports the statement issued by the International Patient Organisation for Primary Immunodeficiencies (IPOPI) (dated 8 May 2012) concerning access to immunoglobulin therapies for patients living with a PID. This includes:

  • Having available immunoglobulin treatments that best suit individual patient needs, that is, not based on the premise that immunoglobulin therapies are generic medicines and can be interchangeable. 
  • That necessary measures need to be taken at a national level to ensure PID patients can have continuous and equal access to the widest range possible of safe and effective immunoglobulin therapies.
  • That prescribing physicians always have the flexibility to choose the most appropriate therapy for their patients.

You can access this IPOPI statement here.

IPOPI position statement: EU reflection on chronic diseases

PID UK supports the position statement issued by IPOPI (dated 5 April 2012) concerning the issue of chronic diseases in the European Union (EU) and how they affect people with a primary immunodeficiency. This highlights:

  • That rare disorders such as PIDs should be an area of focus of any EU-wide action on chronic diseases.
  • The need for early and accurate diagnosis of PIDs with the implementation of specialised reference centres, support for registries and newborn screening tests for PIDs (e.g. severe combined immunodeficiencies) and harmonisation of protocols.
  • The need for assessment of socio-economic benefits of early diagnosis and appropriate treatment must be recognised.
  • A call for improved infrastructure for information and information technology to establish standardised patient registries to better foster and improve awareness of PIDs.

You can access this IPOPI statement here.