South Leicestershire MP, Alberto Costa, has spoken at a debate in Parliament on the issue of access to the drug Orkambi, which is lifesaving medicine for people suffering with Cystic Fibrosis. This debate was brought to Parliament following an e-petition relating to access to the drug through the NHS.
More than 10,000 people in the UK have Cystic Fibrosis which is a debilitating genetic lung condition and for about half of them, Orkambi could make a big difference to their lives. This issue has been brought to Mr Costa’s attention by his constituent Kylie Sullivan whose daughter Amelie- Rose is two years old and suffers with Cystic Fibrosis.
Alberto said, “If Orkambi were available on the NHS, my constituent Amelie-Rose Sullivan, who is only two years old, would be able to receive that life-saving medicine. Having spoken with her family, I understand that she has needed antibiotics on five occasions, which involves a two-week course each time—a cost to the NHS. antibiotics might not have been needed if she were taking Orkambi, which underlines the need for Orkambi to be available. Ultimately, it would be better value for the taxpayer and my constituents”.
In July 2016, the National Institute of Clinical Excellence (NICE) recognised Orkambi as an ‘important treatment.’ They were, however, unable to recommend the drug for use within the NHS on grounds of cost effectiveness and a lack of long-term data. This dispute between the NHS and US- based company Vertex is still currently ongoing.
Alberto added, “This ongoing dispute between the NHS and Vertex needs to be resolved as soon as possible. This is affecting people who are living with Cystic Fibrosis, Orkambi is lifesaving medicine which would provide suffers with a better quality of life. Although Orkambi has been licensed for use in the UK, the National Institute of Clinical Excellence (NICE) have not recommended it for use on the NHS it is currently only available rarely on compassionate grounds. I would like to see Orkambi available on the NHS as soon as possible in order to improve the quality of life of those such as Amelie- Rose living with Cystic Fibrosis.”
Picture above shows Alberto in speaking in the House of Commons Chamber.