philip watt - rare disease day presentation 2016

9
Rare Disease Day February 29 th 2016 PHILIP WATT WELCOME AND INTRODUCTION

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Page 1: Philip Watt - Rare Disease Day Presentation 2016

Rare Disease Day

February 29th 2016 PHILIP WATT

WELCOME AND INTRODUCTION

Page 2: Philip Watt - Rare Disease Day Presentation 2016

‘Better to light a candle than curse the

darkness’: Joe Mooney, Muscular

Dystrophy Ireland

Page 3: Philip Watt - Rare Disease Day Presentation 2016
Page 4: Philip Watt - Rare Disease Day Presentation 2016

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

Page 5: Philip Watt - Rare Disease Day Presentation 2016

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

Page 6: Philip Watt - Rare Disease Day Presentation 2016

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

Page 7: Philip Watt - Rare Disease Day Presentation 2016

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

Page 8: Philip Watt - Rare Disease Day Presentation 2016

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

Page 9: Philip Watt - Rare Disease Day Presentation 2016

The patient voice…..