Iceberg Report

Iceberg Report

The Medical Research Charities Group (MRCG) and the Irish Platform for Patient Organisations, Science & Industry (IPPOSI) have come together to provide a space for patient groups to independently identify their own issues and concerns and to develop common positions and understandings in this area. The recommendations in this report are primarily drawn from discussions at a roundtable meeting of patient groups in the offices of the Irish Human Rights and Equality Commission on June 14th, 2017. The roundtable was convened to identify the gaps and weaknesses in the present drug reimbursement process and to highlight good practice, where it exists.

At the meeting, patient groups expressed a deep sense of frustration at the present system. The last thing patient groups want to do is spend time organising protests outside the Oireachtas and appealing to the general public and the media in order for the concerns of their members to be heard. However, under the present reimbursement system many feel there is increasingly no alternative. The key recommendation in this report is the call for the development of a new sustainable national strategy on access to new and innovative drug therapies in Ireland involving all key stakeholders, including patient groups and the public.

The development of such a policy has the potential to create an environment where patients do get early access to new and innovative drug therapies (in line with stated government policy) and where the need to recourse to advocacy and protest is at the very least significantly reduced.

The MRCG and IPPOSI together recognise that many of the issues raised in this report are already a matter of utmost concern for the Irish Government, opposition parties and senior civil servants in health policy. nothing in this report seeks to personalise problems or detract from the sincerity and expertise of those in Government/statutory agencies addressing these issues, often with inadequate resources. Likewise, the pharmaceutical industry has played the most crucial role in developing new, innovative and improved drug therapies. This is not always fully recognised or appreciated and has, on occasion, been subject to cynical dismissal in public debate. As patient groups, we have gained an insight into the amazing scientific breakthroughs of recent years which have been largely funded by industry. However, there is room for further reform and transparency as well as efforts to further reduce the prices of drugs.

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