News

Crabb: Welsh Government has ‘let down patients’ over Cystic Fibrosis drug Orkambi

Published

5 years ago

October 27, 2019

Tom Sinclair

STEPHEN CRABB has blasted the Welsh Government for not doing enough to help Cystic Fibrosis suffers in Wales.

We are now the only British nation where pioneering cystic fibrosis medicines are not available, the MP said.

But the Health Minister for Wales says a meeting between officials in Cardiff Bay and the drug firm is expected to take place next week.

Patients are calling for a potentially life saving drug to be made available on the NHS after it was approved in England.

Campaigners want Cardiff to provide the drug on the NHS, but there is a concern over costs.

This follows the news that the UK Government has secured and agreement with Vertex Pharmaceuticals to make available all three cystic fibrosis medicines for English patients, disappointing Welsh patients, as they are the only patients unable to get the medicine in Britain.

In September, an agreement was reached between the Scottish Government and Vertex allowing the drugs to help patients.

However in Wales, no agreement has yet been reached with the Welsh Government.

Stephen Crabb MP said: “It is unacceptable that cystic fibrosis sufferers in Wales are not able to have the same treatment as their English or Scottish counterparts, thanks to the Welsh Government.

“Too often constituents tell me that treatment for a range of illnesses and diseases are not available in Wales, but they are available in England. That is the legacy of 20 years of Labour running the Welsh NHS.”there is a concern over the cost.

The drug, named Orkambi, is described as a “precision medicine” and it treats the underlying genetic mutation of cystic fibrosis. Traditional medicines only treat the symptoms.

Cystic Fibrosis is a genetic condition which affects around one in every 2,500 babies born, with around 1,000 new cases being diagnosed each year. The condition causes the body to produce thick mucus, which affects the lungs and digestive system in particular.

Wales’ health minister Vaughan Gething issued a statement to Assembly Members saying Welsh Government officials were in talks with representatives from pharmaceutical firm Vertex.

He told The Pembrokeshire Herald: “I can confirm that Vertex are engaging constructively with Welsh Government officials with a view to brokering an equivalent arrangement to benefit patients in Wales.

“My position has always been that new and innovative medicines should be made available quickly and consistently for patients in Wales but only where their cost fairly reflects the evidence of their benefits.. I can confirm that Vertex are engaging constructively with Welsh Government officials with a view to brokering an equivalent arrangement to benefit patients in Wales.

“My officials have been working alongside NHS England during these negotiations and, as a result, the legal agreement reached includes a requirement that Vertex must make equivalent terms available to the NHS in Wales.”

Mr Gething added: “I will ensure Assembly Members are updated when further details are available.”

Crime

Pembroke Dock woman in court for failing to remove rubbish from property

Published

11 hours ago

November 25, 2024

Court Reporter

A PEMBROKE DOCK resident is due to appear before Haverfordwest Magistrates’ Court later today (Nov 25) for multiple alleged breaches of a community protection notice.

Sheena Deacon, of 13 Wavell Crescent, Pembroke Dock, faces charges under the Anti-social Behaviour, Crime and Policing Act 2014, which carries a maximum penalty of a Level 4 fine.

The charges stem from allegations that Deacon failed to remove accumulated household waste from her property on several occasions. According to court documents, the breaches occurred on September 19, September 26, October 2, October 9, and October 17 this year.

The charges indicate that Deacon, despite being issued with a community protection notice, did not comply with the requirements to clear and appropriately dispose of refuse and household waste from her address.

The Herald will bring updates on the case as it progresses.

News

Welsh Conservatives urge Labour to scrap ‘family farm tax’

Published

11 hours ago

November 25, 2024

Tom Sinclair

THE WELSH CONSERVATIVES have announced plans to bring forward a Senedd debate next week (Nov 27) calling on the UK Labour Government to abandon its proposed “family farm tax.”

The tax, introduced by the UK Labour Government, is being criticised as a move that will harm Welsh farming, threaten food security, and increase food prices. Alongside the Welsh Government’s Sustainable Farming Scheme and perceived “anti-farming agenda,” critics argue this new tax amounts to a coordinated effort to undermine the future of agriculture in Wales.

Shadow Minister warns of consequences
Ahead of the debate, Welsh Conservative Shadow Minister for Rural Affairs, James Evans MS, condemned the proposal, stating:
“Labour’s family farm tax will put family farms out of business, threaten our food security, and lead to food prices rising. Only the Welsh Conservatives will stand up for our farmers, and that’s why we’re bringing forward a Senedd motion calling on Labour to reverse this decision. No farmers, no food.”

NFU Cymru expresses alarm
NFU Cymru President, Aled Jones, echoed these concerns, highlighting the widespread opposition from the farming community. Speaking about the impact of the tax on Agricultural Property Relief and Business Property Relief, Jones said:
“Earlier this week, hundreds of farmers from across Wales journeyed to London to meet with their MPs and register their deeply held concerns about these misguided and ill-thought-out reforms.

“The proposals unveiled by the Treasury last month to introduce a tax on the passing on of our family farms to the next generation are a massive added burden. They will leave many farmers without the means, confidence, or incentive to invest in the future of their business.

“NFU Cymru reiterates its call for the UK Government to halt these changes.”

The motion to be debated
The motion, set to be debated in the Senedd, reads:
“To propose that the Senedd:
Calls on the UK Labour Government to reverse its decision to impose a family farm tax on agricultural businesses.”

This debate is expected to attract significant attention, with Welsh farmers and rural communities keenly watching for the outcome.

Community

Internet outage for two villages after exchange box destroyed

Published

13 hours ago

November 24, 2024

Tom Sinclair

RESIDENTS of Clunderwen and Llandissilio have been left without internet access following the destruction of an Openreach exchange box just outside Llandissilio village.

The incident occurred yesterday (Nov 23) when the box was reportedly demolished by a vehicle. The damage has resulted in a complete loss of internet services for the two villages, with repairs expected to take at least a couple of days.

Local residents have expressed frustration over the disruption, as the outage affects home businesses, remote workers, and households relying on internet connectivity for day-to-day tasks.

Openreach engineers have cordoned off the site, and work is ongoing to assess the extent of the damage. A spokesperson for Openreach has been contacted for comment but had not responded by the time of publication.

The vehicle involved in the incident has not yet been identified. Anyone with information about the collision is urged to contact the local police.

With repair timelines unclear, affected residents have called for increased communication from service providers to manage expectations during the outage.

“Bringing the community back online is a priority,” a local resident said. “We’re hoping Openreach can resolve the issue quickly and ensure it doesn’t happen again in future.”