Philip Watt - Rare Disease Day Presentation 2016
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Rare Disease Day was held on February 29th 2016. The document discusses the impact of funding cuts to Ireland's health system on rare diseases. It notes there are now 12,000 fewer health staff and €4 billion cut from the health budget since 2008. This has led to frontline staff shortages, overworked remaining staff, increased wait times, and reluctance to fund new therapies. It calls for more funding and staffing of clinical genetic services, faster approval of new drugs to treat rare diseases, and better implementation of Ireland's National Rare Disease Plan to help patients.
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- 2. ‘Better to light a candle than curse the darkness’: Joe Mooney, Muscular Dystrophy Ireland
- 4. Providing adequate funding for our Health Services: Sara Burke, TCD Report 2014 12,000 fewer Health Service Executive (HSE) staff in December 2013 than there were at the height of public health sector employment in 2007 (HSE, 2013b, HSE, 2014). Approximately €4 billion has been cut from the Irish health system since 2008 December 2014, there were the highest numbers of people with medical cards in the history of the state
- 5. Consequences for rare diseases? Frontline staff shortages across the system Remaining staff stretched and under pressure Queues for basic services increasing Increased reluctance towards funding new and innovative therapies Ireland less attractive place for key medical staff compared with other countries Research on rare diseases needs to be given greater value and resources
- 6. Clinical Genetic Services Fundamental to diagnostics, care and treatment of those with RD Current staffing levels among worst in Europe 70-80% recommended level Royal College Physicians (Eng) In survey of 14 European countries, Ireland last in terms of genetic consultants per head of population Waiting lists of over 15 months to see a genetic Consultant Urgent need to publish and implement Smyth Report Welcome work of Eilish Hardiman in this context
- 7. New and innovative drugs Very exciting period in development of new and exciting drugs that are beginning to target the underlying cause of disease and not just symptoms Implement recommendation 30 National Rare Disease Plan Welcome commitment of NCPE to develop tools for patient group engagement – new template Welcome work of the HPRA and HSE Dr Aine Carroll and Dr Michael Barry on dangers of Epilim on women of childbearing age
- 8. National Rare Disease Plan Acknowledge progress, Dr Devlin, Professor Treacy But implementation under resourced to drive forward the National Rare Disease plan Need to move from oversight to implementation