Adorable twins James and Alex Blair may look like two peas in a pod, but they suffer a condition that would not allow them to come face to face.
The brothers suffer from an incurable lung condition called cystic fibrosis. Cystic fibrosis is a progressive genetic disorder that affects the lungs, pancreas, and other organs. It causes persistent lung infections, and it limits the patient’s ability to breathe.
Parents Ian and Victoria want their kids to be given access to new-generation drugs that may be a cure for the condition.
The twins were born three years ago, and ever since their birth, the NHS and the drug company have battled over the price of Orkambi, the presumable cure for cystic fibrosis, which costs £104,000 per year for every patient, and the drug has to be taken for life.
Driven by the hope to cure the condition for her children, Victoria, along with other campaigners, urged the Government to use the law to allow them to finally avail the drug by perhaps breaking the patent order and releasing a generic version of the drug.
The campaigners also wrote a letter to Dr. Jeffrey Leiden, CEO of Vertex Pharmaceuticals, pleading for him to let patients like James and Alex access the drugs that can treat the disease.
Orkambi is a legal medicine in the UK, and it has long been licensed by the government. However, officials say the price of the drug means that it is not cost effective.
Victoria says the drugs would make a significant difference to James and Alex because the earlier the drug is taken, the longer the patients are expected to live.
“I am absolutely staggered it could come to this,” said Victoria. “The pharmaceutical company should put the lives of patients before financial gain so people can go on the drugs as soon as possible.”
One company said that parents should work with governments and regulators to agree to the fair pricing of the drug while taking the value of the medicine into consideration.