Diabetes Ireland is one of 35 Irish patient organisations who have signed a Charter calling for greater patient involvement in the ‘Medicines Assessment & Reimbursement’ process in Ireland. The Charter calls on the government to improve the transparency, accountability and communication on how medicines are assessed & reimbursed by the State.

The Charter, co-ordinated by the Irish Platform for Patient Organisations, Science & Industry (IPPOSI), with the support of the Medical Research Charities Group (MRCG) and Rare Disease Ireland (RDI), sets out 29 actions that the relevant State agencies (Department of Health; Health Service Executive, National Centre for Pharmacoeconomics) should take to inform and include patient perspectives at every stage of the process.

IPPOSI Chief Executive, Dr Derick Mitchell, said:

“The current process by which we assess and decide on what new medicines are made available on the Irish market is inadequate and outdated – as the Minister for Health himself has admitted. We want patient voices to be heard. We want patients to have seats at the table, and we want patients to be informed and supported in these roles. This is already happening with the model created for the Rare Diseases Technical Review Committee¹. These are the kinds of positive steps that the Charter identifies.”

The Charter includes calls for:

• Patients to be notified by national agencies about new medicines seeking to become available on the Irish market
• Patients to be able to access a public database where the progress of new medicines through the process is shared
• Patients to be given access to the documents and evidence used by assessment and decision-making bodies
• Patient representatives to be inserted onto all relevant committees involved in deciding what medicines become available, when and to whom
• Patients to receive fair reimbursement for time and expenses incurred as part of patient representation responsibilities
• Patients to receive and comment on draft assessments and decisions
• Patients to obtain an ‘Assessment Explained’ and ‘Decision Explained’ plain-English summary
• Patients to have the opportunity to complete education and training on how to best interact with the process

The full charter recommendations are available at www.ipposi.ie