philip watt - rare disease day presentation 2016
TRANSCRIPT
Rare Disease Day
February 29th 2016 PHILIP WATT
WELCOME AND INTRODUCTION
‘Better to light a candle than curse the
darkness’: Joe Mooney, Muscular
Dystrophy Ireland
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
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
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
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
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
The patient voice…..