MPs debate petition calling for free life-changing medicine

Ivy Weir, aged four, with her mother, Gemma
Picture : Habibur Rahman — Ivy Weir, aged four, with her mother, Gemma Picture : Habibur Rahman

Portsmouth mums Gemma Weir and Michelle Frank went to the parliamentary debate after their petition to obtain the drug Orkambi for free got 114,000 signatures.

The drug is used to treat cystic fibrosis, an illness both Gemma and Michelle’s daughters have.

MPs packed out the debate hall along with members of the public to discuss their plans for the future.

25/1/18
CATCH LINE: Orkambi Campain
Gemma Weir and Michelle Frank with the Medication that they are raising funds for. at Gemma's home in Coleridge Rd, Paulsgrove.

STORY: Gemma Weir and Michelle Frank are parents of children with Cystic Fibrosis. They have been campaigning to get drug Orkambi available on the NHS for people with the condition. It recently got approved by NICE to be used in the UK but isn't on the NHS. So far, their petition has 15,000 signatures and they want to raise awareness and show the different Orkambi could make to children like theirs.
Picture : Habibur Rahman PPP-180125-175234006 — 25/1/18 CATCH LINE: Orkambi Campain Gemma Weir and Michelle Frank with the Medication that they are raising funds for. at Gemma's home in Coleridge Rd, Paulsgrove. STORY: Gemma Weir and Michelle Frank are parents of children with Cystic Fibrosis. They have been campaigning to get drug Orkambi available on the NHS for people with the condition. It recently got approved by NICE to be used in the UK but isn't on the NHS. So far, their petition has 15,000 signatures and they want to raise awareness and show the different Orkambi could make to children like theirs. Picture : Habibur Rahman PPP-180125-175234006

It was attended by Portsmouth MPs Penny Mordaunt and Stephen Morgan, Havant MP Alan Mak and Meon Valley MP George Hollingbery.

Paul Scully, MP for Sutton and Cheam, hosted the debate.

He said: ‘It is a fantastic effort from the petitioners to not only get 114,000 signatures but to get them in 10 days is remarkable.

‘We are in a position of negotiation between the pharmaceutical company Vertex and NHS England.

‘The important thing is that we get this drug for these people who are suffering.’

He added: ‘I keep talking about urgency because for people with cystic fibrosis, their lung capacity can drop quite quickly in a matter of months.

‘For people with it, it can be a matter of life or death or being able to get a lung transplant or not.

‘The sense of urgency for this limited but important number of people is that if we give them the treatment they can live long full lives.’

As previously reported in The News, Orkambi is not available on the NHS after the National Institute for Health and Care Excellence (Nice) recommended it was not cost-effective.

Currently Orkambi, which does not cure cystic fibrosis but stops the condition from getting worse, is £104,000 per patient per year.

Portsmouth South MP Stephen Morgan was among those at the debate, which saw 560 signatures from his constituency forming part of the 114,000 sent in to parliament nationally.

Mr Morgan said: ‘Today was an important opportunity to urge the government to seriously consider the offer by the drug company and understand the significance of Orkambi, and other new and innovative treatments, in the CF development pipeline.’

He added the government ‘must act now’ to ‘secure tangible results’ on the campaign.

Mr Morgan pledged to write to the health and social care secretary Jeremy Hunt to demand action is taken.