Alpha-1 Antitrypsin Deficiency also known as Alpha-1, A1AD or AATD is an inherited, genetic condition that is passed on from generation to generation. As the name suggests it is a deficiency of alpha-1 antitrypsin (AAT) in the bloodstream. AAT is an enzyme produced in the liver to help protect the tissues of the body during infections. The low level of AAT in the blood occurs because the AAT is abnormal and cannot be released from the liver at the normal rate. This leads to a build up of abnormal AAT in the liver that can cause liver disease and a decrease of AAT in the blood that can lead to lung disease.
In a landmark seminar at the Scottish Parliament last week, the Alpha-1 Alliance moved one step closer to achieving its goal of improving health services for patients of the condition in Scotland – with a personal commitment to improve care for the rare disease from Health Secretary Alex Neil MSP.
The event, which was chaired by Dr Aileen McLeod MSP, served as a platform to discuss the Alliance’s policy report on the unmet medical need of Alpha-1 patients in Scotland – which was informed by the findings of the Alliance’s 2013 survey of Scottish Alpha-1 patients, relatives and carers.Members of the Alpha-1 patient community, specialists clinicians, government officials and politicians came together to talk about what steps can practically be taken to establish a nationally commissioned specialist service for Alpha-1. The Alliance was pleased to welcome a number of MSPs to the event, including Conservative spokesman for Health and Community Care Nanette Milne, Linda Fabiani, Iain Gray, Christian Allard and Minister for Children and Young People Aileen Campbell.