Positive steps for drug after visit to No.10

Gemma Weir and Michelle Frank, from Paulsgrove, delivered a petition to 10 Downing Street calling for treatment drug Orkambi to be free for people with cystic fibrosis.

Gemma said: ‘We took the petition to London with 113,281 signatures and counting and now our petition will be debated in Parliament and out of 4,000 is the 10th petition to be chosen.

She added: ‘To everyone who signed the petition, the words thank you really are not enough.’

Both Gemma and Michelle’s young daughters, Ivy and Emma, have cystic fibrosis which causes a thick mucus to clog up the lungs and digestive system.

Gemma said: ‘There was also a round table discussion and I was told it had to be moved because so many people wanted to come and listen about Orkambi which is really positive for us.’

Gemma added: ‘We also laid yellow roses at the Winston Churchill statue because that is the international sign for cystic fibrosis.

The treatment currently costs £104,000 a year per patient and is not available on the NHS.

Michelle said: ‘Despite the weather conditions so many people still came out to support us and that really shows how much this drug means to people.

‘The protest, discussion and the debate are all a big step forward in our campaign and we need to keep our foot on the gas to make sure we get this done.’

Portsmouth South MP Stephen Morgan attended the discussion in London and met with both Michelle and Gemma.

Michelle said: ‘It was great to have support from so many MPs and in fact when we got our taxi in the morning the driver asked why we had posters and after telling him he gave our money back and said his nephew had cystic fibrosis.

‘It just shows how many people are affected by the disease and what this drug could mean for people’s lives.’

Orkambi will be debated in Parliament on March 19.