Cystic Fibrosis (CF): a life limiting, life shortening disease. Around 10,800 people in the UK are diagnosed, affecting roughly one in every 2,500 babies born. Caused by a faulty gene that’s carried by one in twenty-five people, the genetic condition causes a build-up of sticky mucus in the body’s tubes generating dangerous, recurring infections.
Everyday life for people with CF has it’s added challenges, with the most mundane tasks becoming chores with extra hurdles. Eating for example, involves numerous medications with essential enzyme tablets having to be taken after consuming anything containing fat. Mask wearing and raw hands after excessive sanitation became the public norm during Lockdowns however, this has been life for those with the genetic condition for as long as they can remember. ‘Life with CF is physically as well as psychologically exhausting’, explains Sarah Pinnington Auld who is the mother of four-year-old CFer Lucy from Canterbury, Kent. The constant treatment regimes, physio and hospital appointments make life one long ‘risk assessment’ to keep Lucy safe from life shortening pathogens.
Nonetheless, Mrs Pinnington Auld did clarify that there are so called ‘wonder drugs’ available which have created life transforming changes for people with the condition. Despite there currently being no known cure, medicines such as Kaftrio, Okambi and Symkevi appear to be the next best thing- allowing a next to normal life in comparison to living without them. However, a recent NICE announcement made known that such medication is at risk of being made unavailable for those who are yet to be given access to said treatments. This is because they are now deemed too expensive at present pricing for the NHS, with a decision due to be made as to whether they are still cost-effective for the tax payer.
This has proved particularly painful for those with CF and their families. Kaftrio for instance, improves ‘health and life expectancy’, ultimately reducing the enormous psychological burden of the condition. The knowledge that a life changing and extending drug is available but, is now possibly just out of reach has generated great confusion and anger amongst the CF community. Many resultantly feel as though they’re lives are being placed secondary as a result of capital being deemed to have utmost importance. Ultimately, this brings a utilitarian argument into question, making us ask ourselves: at what line should the prosperity of the majority be placed ahead of saving and improving the lives of the vulnerable few?
