Advocacy and access to therapies

Fighting Blindness works with a number of other groups to advocate for better medicine assessment and reimbursement processes in Ireland. A crucial element to making these processes more effective is to incorporate structured and meaningful patient involvement at all stages. Our goal is to ensure that people get access to the therapies they need in a fair and timely manner.

IPPOSI Patient Charter

Fighting Blindness is one of 35 patient organisation signatories to the IIPPOSI Charter for Patient Involvement in Medicines Assessment and Reimbursement Processes in Ireland. We are also a member of the Patient Charter Implementation Group.

The Charter is 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). It represents a call to action from Irish patient organisations to the Department of Health (DoH), the Health Service Executive (HSE) and the National Centre for Pharmacoeconomics (NCPE). It calls on the Government to improve the transparency, accountability and communication on how medicines are assessed and reimbursed by the State.

The document outlines twenty-nine actions that the relevant State agencies should take to inform and include patient perspectives at every stage of the process. More information about the Charter is available on the IPOSSI website.

Drug Iceberg meetings and reports

Amidst growing concerns from patients and patient organisations about the assessment and reimbursement of medicines in Ireland, the MRCG and IPPOSI convened a series of ‘Drug Iceberg’ meetings in recent years. These concerns include issues such as consistency and transparency of the process and the need for significant system reform.

The first Drug Iceberg meeting took place in June 2017 and the subsequent report “Steering a course to avoid the drug iceberg – a consensus perspective from patient groups” was published in August 2017. The report outlined the challenges of accessing new and innovative medicines in Ireland and called for a new national strategy involving all key stakeholders, including patient groups and the public.

The second Drug Iceberg meeting, a multi-stakeholder round-table meeting in October 2017, led to a second report, “Steering a course to avoid the drug iceberg – a multi-stakeholder perspective” which was published in February 2018. This report built on the initial report, detailing recent developments in the space since that time and incorporating the views of other relevant stakeholders.

Both of these reports made recommendations for each relevant stakeholder and listed a number of outcomes and targets to be achieved in 2018. The report from a third Drug Iceberg meeting in November 2018 will be published shortly.