, , , ,

Darren continues to fight for Cystic Fibrosis patients

MP for Bristol North West, Darren Jones has continued to fight for access to Orkambi for the 10,400 people with Cystic Fibrosis in the UK.

Darren has co-signed another letter to Vertex Pharmaceuticals (the first was sent on 28th June 2018) – this letter asks the company to urgently sit down with, and resolve, the negotiations with NHS England so those with cystic fibrosis can have access to this revolutionary drug.

Darren said:

“Cystic Fibrosis is a cruel and life-shortening condition – it is unacceptable this drug has been licensed for over three years yet it is still not available for the people that sorely need it. Median life expectancy for someone with CF is just 47 – in the context of that stark figure three years is far too long and time is being wasted. People with Cystic Fibrosis should not have to keep waiting for this treatment to be available.

NHS England and Vertex need to sit down as a matter of the strongest urgency and sort this out and the government should be facilitating that discussion. These delays are causing unnecessary suffering to my constituents and thousands across the country”.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

You can find out more about Cystic Fibrosis and the support available here.

, , ,

Darren signs food insecurity letter

Food insecurity is a widespread problem in the UK, with the Trussell Trust alone seeing a million people at its food banks a year. However, there are no statistics on exactly how many people are struggling for food for how long. To tackle the problem we need to know how widespread it is, so Darren signed a letter to the Government asking them to begin measuring food insecurity.

 

 

, , , ,

Darren challenges drug company over Orkambi

MP for Bristol North West, Darren Jones has continued to fight for access to Orkambi for the 10,400 people with Cystic Fibrosis in the UK.

Darren has co-signed a letter to Vertex Pharmaceuticals – this letter asks the company to urgently resolve the negotiations with NHS England so those with cystic fibrosis can have access to this revolutionary drug.

Darren said:

“I sympathise profoundly with anyone affected by Cystic Fibrosis (CF) and I appreciate the strength of support for making Orkambi available on the NHS  – that was clearly demonstrated by an online petition signed by  113,000 people. Cystic Fibrosis is a cruel and life-shortening condition – it is unacceptable this drug has been licensed for three years yet it is still not available for the people that sorely need it. Median life expectancy for someone with CF is just 47 – in the context of that stark figure three years is far too long and time is being wasted.

NHS England and Vertex need to sit down and sort this out and the government should be facilitating that discussion. These delays are causing unnecessary suffering to my constituents and thousands across the country”.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

You can find out more about Cystic Fibrosis and the support available here.

, ,

Darren asks government about UK company participation in EU projects after Brexit

Currently, after Brexit the UK will for a time continue to contribute financially to EU Security and Defence projects. However, non-EU country companies are prohibited from bidding for EU security and defence projects. Mindful of the effect this could have on companies, Darren asked the Government Minister for Defence Procurement about this potential situation and whether it could be prevented.

 

Darren also asked how concern around funding for the Galileo project tied into concerns around defence funding in general.

,

Watch Darren ask business and third sector representatives about post-Brexit visas

The Science and Technology committee, which Darren is a member of, held a one off evidence session on post-Brexit immigration arrangements. The session was set up to help the committee develop proposals for an immigration system which works for science and innovation.

The witnesses were from a range of bodies, including techUK (the main trade body for technology companies in the UK), the Wellcome Trust (a health research charity) and the Campaign for Science and Engineering.

Darren asked them about which non-EEA countries we should focus on getting visa arrangements in place with.

,

Darren votes on EU withdrawal bill amendments

This week, the EU (Withdrawal) Bill, which decides how we will leave the EU – if we do – came back to the House of Commons. The House of Lords had added amendments including for EEA membership and a meaningful vote in Parliament on the final deal. The Commons was asked to vote on these. Darren wrote a letter to constituents, published on Facebook, explaining how he would vote. You can read the letter here.

 

, ,

Darren asks experts about Energy Drinks

The Science and Technology Committee are currently holding an inquiry into energy drinks. They are looking at the effect of these drinks on health, particularly of young people and children.

Darren asked a board of academics, dietitians and a representative from a teachers union about this issue. He focused on the advertising of energy drinks, and how this might affect their consumption.

,

Darren asks scientists about UK Quantum Technology

Darren attended an evidence session for the Science and Technology Committee’s Quantum Technologies inquiry, which will look at how Quantum Technology development in the UK can be aided.

Quantum technology was picked out as an industrial challenges to be addressed by the Industrial Strategy. The Quantum Tech sector, as a result, will be allocated £20m ‘pioneer funding’. This is on top of existing government support, including the establishment of a National Quantum Technologies Programme in 2013. This programmes translates academic work on quantum into new products and services.

In the first part of the evidence session, two witnesses who have been closely involved in the programme gave evidence. In the second, there was a broader discussion about Quantum Technology development with academics and learned societies with an interest in quantum technologies.

Darren asked the first set of witnesses about international collaboration after Brexit:

 

He asked the second set about the skills, standards and regulations for Quantum Technology:


 

 

, ,

Darren asks experts about social media and violence

 

The Science and Technology Committee, which Darren is a member of, held public evidence session on social media and its links to violence. This was part of its inquiry on Social Media and screens-use.

The witnesses present were Martin Hewitt, Assistant Commissioner, Metropolitan Police Service, Dr Netta Weinstein, Senior Lecturer, Cardiff University, Beth Murray, Director of Communications and Engagement, Catch 22, Dr Keir Irwin-Rogers, Lecturer, The Open University, and Sheldon Thomas, Consultant on gang and youth violence, Gangsline.

Darren asked the witnesses about the funding for online policing, and who should be responsible for enforcing regulation on the internet.

,

Darren asks scientific experts about social media and the harm it could cause

Darren was present at the Science and Technology committee’s first evidence session for its Social media and screens-use inquiry. Here, charities, learned societies and academics were asked about cyber-bullying, addiction and body image.

The witnesses shown here were Matt Blow, Policy and Government Affairs Manager, YoungMinds, Dr Liam Hackett, CEO, Ditch the Label, Dustin Hutchinson, Research and Policy Analyst, National Children’s Bureau, and Carolyn Bunting, CEO, Internet Matters.

Darren asked the witnesses about the age of consent for social media, and about evidence linking social media to health related harms.