Cystic fibrosis patients in the UK are planning a protest on November 19th, 2018 with the goal of getting Orkambi, an important cystic fibrosis drug, covered on the NHS. This protest is planned to fall three years to the day that the drug was officially licensed in the country. Despite the fact that Orkambi could potentially be useful for nearly half of the cystic fibrosis patients in the UK, the National Institute for Health and Care Excellence (NICE) did not accept the drug for coverage on the NHS at the time. NICE cited concerns such as lack of long term data on the drug’s effects and questionable cost-effectiveness.
About Cystic Fibrosis
Cystic fibrosis is a type of genetic disorder which can have impacts throughout the body, but it is most characterized by the build up of abnormally thick, sticky mucus in the lungs. This mucus becomes a fertile breeding ground and habitat for potentially infectious bacteria. Many patients must take antibiotics for much of their lives. This disorder is caused by mutations of the CFTR gene. Symptoms of cystic fibrosis include progressive decline in lung function, lung and sinus infections, coughing up mucus, fatty stool, poor growth, infertility in males, clubbed digits, and digestive problems. Treatment includes antibiotics and medications or procedures intended to maintain lung function. Lung transplant is an option when lung function declines severely. Life expectancy ranges into the 40s and 50s with good care. To learn more about cystic fibrosis, click here.
An Ongoing Struggle
For the past three years, negotiations between the government and Vertex, the company that produces the drug, have been shaky. In the last year, the cystic fibrosis community has held numerous protests and petitions and has no plans of backing down now. The latest negotiations were held in September 2018.
To coincide with the protest on the 19th, members of the cystic fibrosis community will be submitting their latest petition to Vertex calling to make Orkambi more affordable for patients. You can sign this petition here. In addition, some members of the community are also planning to meet with some MPs in order to voice their concerns personally.
In a positive development for the campaign, the Health and Social Care Committee announced on the 9th that they will be conducting an investigation in regards to the availability of Orkambi and other therapies for cystic fibrosis on the NHS. This could allow the ongoing discussion between Vertex, NICE, and the NHS to be scrutinized by the public.
To coincide with the November 19th protest, there will also be an accompanying social media campaign. Click here to learn more.