For the first time in nearly a decade, Alpha-1 Antitrypsin Deficiency (AATD) has been mentioned in the House of Commons, by Mark Pawsey, Conservative MP for Rugby. His much-welcomed question came as part of the “Business Questions to the Leader of the House” session on the morning of 6th December 2012.
According to today’s official transcript (released by Hansard and available here), Mr Pawsey asked: “I recently met my constituent, Stephen Leadbetter, who has suffered from lung problems since he was 14. He is now 22, and has recently been diagnosed as having alpha-1 antitrypsin deficiency. Stephen believes that if he had been diagnosed earlier, his health would not now be declining so rapidly. May we have a debate about raising awareness of this and similar conditions?“
Mr Lansley (Leader of the House) replied: “It is important that the Department of Health should continue to support research and development into rare genetic diseases, and we have protected the research and development budget in order to do so. We consulted on a rare disease plan, and published a summary of the consultation responses last month. Work is on track to produce a UK rare diseases plan by the end of 2013, which could help my hon. Friend’s constituent and many others.“
The Trustees of Alpha-1 Awareness UK – Britain’s first charity aimed at raising awareness of this badly under-diagnosed condition, which affects lungs and liver – welcomed the fact that AATD was at last on the parliamentary agenda, however briefly. Dawn Heywood-Jones, a sufferer of AATD herself, and founding trustee of the UK charity said: “This is the first step of a long journey. At last we are on the correct road.“
Her husband Alan Heywood-Jones, Chairman of Alpha-1 Awareness UK and President of Alfa Europe, the European Federation for Alpha-1 Antitrypsin Deficiency, said: “For hundreds of generations the condition had no name. In 1963 it received the name Alpha-1 Antitrypsin Deficiency. Now after 50 years of brilliant medical detective work in the laboratory the focus is shifting to effective and available treatment in the real world. We can all help to make this happen. The awareness and support of Members of Parliament is especially important.“
The exchange between the MPs – which lasted approximately one minute – can be viewed below, or accessed directly at the Parliament TV web-player at: http://www.parliamentlive.tv/Main/Player.aspx?meetingId=11923&wfs=true&player=smooth
(The question from Mr Pawsey MP starts at 11:16:46 AM – you may wish to use the player’s control arrows or drag the slider to skip forwards, because the whole session began at 9:34 AM!)