An Open Letter to the Alpha-1 Community

This open letter is intended to give an update on the recent activities of the Alpha-1 UK Support Group on behalf of the Alpha-1 community in the UK, and to express the strong support of Alpha-1 Global and the Alpha-1 Foundation for those activities.

The Alpha-1 community in the UK is understandably excited about the 2015 publication of a paper on the RAPID trial, which involved the Alpha-1 (AAT) augmentation therapy Respreeza®, in the prestigious medical journal The Lancet, and the European Medicines Agency’s recent approval of Respreeza® for prescription use in Europe.

The National Institute for Health and Care Excellence (NICE) is currently considering a technology appraisal of Respreeza® to develop recommendations on its use in England. The scope of this potential health technology appraisal (HTA) has been under consultation with different stakeholder groups in the UK.

The Alpha-1 UK Support Group has formally responded in detail to the NICE draft scope consultation, and the charity’s Trustees Karen North and Dr Sandra Nestler-Parr attended the NICE scoping meeting on 16th October 2015.  The aim of the meeting was to discuss with all stakeholders – clinicians, patients, industry, the National Health Service (NHS), etc. – the most appropriate scop
e for a potential HTA for Respreeza®.

NICE is fully aware of all relevant evidence necessary to make a well-informed recommendation to Ministers on the most suitable HTA route.  Ministers will decide by February 2016 whether and how Respreeza® should be appraised by NICE.  The actual appraisal process will not commence until spring 2016 at the earliest.  All relevant information and status updates are available on the NICE website.

All signers of this letter are grateful to NICE for its consideration of the detailed response made by the Alpha-1 UK Support Group to NICE’s review of a potential HTA for Respreeza®.

Alphas have made enormous progress in the last few years in the UK.  Most recently, two Specialist NHS AATD Services have been established at the University Hospitals Coventry and Warwickshire and at the University Hospital Birmingham, offering multi-disciplinary, expert care for Alphas from across England.

The Alpha-1 UK Support Group has been able to drive these improvements in the care of Alphas only by building relationships with different stakeholders and engaging in the formal processes that are put in place by the government and the NHS.

At the same time, the charity continues to focus on its mission to support Alphas across the UK by providing education, advice, financial support, equipment hire and a platform for Alphas to connect with each other and share experiences.

The Alpha-1 UK Support Group’s trustees, and all volunteers, take their responsibility very seriously to work solely in the best interest of the charity’s membership and the wider Alpha-1 community.  They work beyond the call of duty to improve access to optimal care and treatment to enhance the quality of life of Alphas.

The Alpha-1 UK Support Group regularly reviews and updates its website, leaflets and brochures, and continues to make those materials available while review or updating is taking place, as a helpful resource to its membership and the wider community.

Fellow participants in Alpha-1 Global have frequently praised the Alpha-1 UK Support Group for its open and energetic collaboration to expand patient choices and improve access to care for Alphas in the UK and around the globe.

Alpha-1 Global and the Alpha-1 Foundation in particular laud the Alpha-1 UK Support Group for ably representing the patient point of view as NICE considers the scope of an HTA for Respreeza®, and we wholeheartedly support the charity’s strategy in actively participating in this essential process.

Alpha-1 Global

Alpha-1 Foundation

Alpha-1 UK Support Group

Published: 29/10/2015