Burghers’ no to Maccy D’s
Parents’ plan for 4-yr-old who has cystic fibrosis
A MUM and dad think moving to Scotland might be the only way they can get potentially life-saving medication for their daughter.
Stacey and Dave Louden are considering the 10-mile hop north for fouryear-old Ayda who has cystic fibrosis.
Health chiefs in Scotland have agreed a deal with the maker of Orkambi, a drug judged too costly by the NHS south of the border.
Dad-of-two Dave said: “My family must seriously consider the move to Scotland as these drugs are and will be a crucial factor in Ayda’s health...
“We may be left with no other option.
“It is heartbreaking and frustrating knowing these drugs are so close, yet so far from Ayda having access to them.
“Her cystic fibrosis is a volatile condition. It only takes one bad infection for these drugs to become her only lifeline.”
The 34-year-old fire alarm engineer and wife Stacey, 31, say their potential move to Scotland from Carlisle, Cumbria, would be an upheaval but the
short distance means they are lucky compared with other affected families. Cystic fibrosis shortens life by causing lung damage, diabetes and liver disease. The typical age of those dying from the disorder is currently around 31. There is no cure but if taken by age six, Orkambi can correct gene mutation and alleviate symptoms. It can add 23 years of life. There are 10,500 people in the UK who have the debilitating, genetic condition, and around half would benefit from Orkambi. NHS England has battled with Vertex for three years over the drug which would cost £105,000 per patient per year. The US company declined a £500million offer for a fiveyear supply. The Department of Health said: “NHS England put forward a very generous offer. We urge Vertex to accept the deal.” It added Health Secretary Matt Hancock will “bring in their representatives to explore what the barriers are to reaching an agreement”. Vertex said its chief has agreed to meet Mr Hancock. FAMILY Stacey, Dave & Ayda Young Ayda has condition Orkambi tablets RESIDENTS in England’s smallest county are furious over plans to open the area’s first McDonald’s.
People in Rutland are fighting proposals for a drive-thru restaurant.
David Taylor, 39, said: “For years we’ve proudly boasted that we’re the only county in England without a McDonald’s. It’s a shame.”
The council has approved the bid but a final decision is awaited.
McDonald’s opened its first UK restaurant in 1974 and there are now 1,249.