Horam boy appeals to drug company to reduce price of life-saving medicine

Luis with his letter to the Prime Minister and her response

A Horam mother has described her poorly son not having access to a ‘miracle’ drug that can prevent the worsening of his cystic fibrosis as ‘heartbreaking’.

Christina Walker is mother to eight-year-old Luis who was diagnosed with the devastating condition when he was just a few weeks old.

Last week Luis, who goes to Maynards Green School, wrote to Vertex the US manufacturer of a drug called Orkambi to ask them to reduce the price. At the same time his mother launched a petition which has already been signed by more than 9,000 people. You can sign the petition here Help Luis & others with Cystic Fibrosis to access your life-saving medicines

The story of Luis’ plight and the petition was picked up by the Press Association and there was huge interest.

Luis and his mum on ITV’s This Morning

Christina said: “The phone went crazy. First we had Channel 5 visiting and filming Luis posting his letter and then we had calls from ITN, This Morning and Sky. We ended up doing six interviews in different place in London in one day with hardly any time in between. It was great to get so much interest.”

Like 4,000 other people with the most common type of Cystic Fibrosis (CF), Luis would benefit from Orkambi as it could allow him to lead a normal life and not spend so much time in hospital. His mother says that the drug normalises the body and prevents further problems like chest infections which can cause hospitalisation. Orkambi was licensed more than 1,000 days ago in the EU.

Countries where Orkambi is available

Orkambi is available in 13 other countries, including Ireland, Greece, Italy, and Germany as well as Australia and the USA. However it is not available in the UK because, according to Christina, the NHS’ drug assessment body NICE says it’s too expensive even though it will reduce the number of times CF sufferers will be in and out of hospital.

Christina added: “Last month the NHS made an offer to the manufacturers Vertex but they turned it down. Unless Vertex lowers their price and reaches a deal, people like Luis will continue to decline in health. CF is progressive and Luis already has an antibiotic-resistant infection in his lungs which he’s struggling to eradicate.

“He spends three hours a day every day taking medicine, doing physio and treatments. Luis really needs Orkambi. Any help local people can give with adding signatures to the petition will be very much appreciated. If people can please sign and then share, that’s how the numbers swell. We will be presenting the petition to Vertex sometime in September.”

Luis, his mother and others have been campaigning since February and in May Luis even wrote to Prime Minister Theresa May to ask for her help.

“It’s a combination of corporate greed and the NHS being cash strapped. At the moment Orkambi costs £100,000 per year per person for one pill a day and it needs to be taken for life. People who have been on trials in the UK have had their lives transformed and have gone from being sick to leading near normal lives – to us that is priceless. Any support local people can give us would really help so we can keep pressure on the drug company to lower the price,” Christina explained.

The first petition got 100,000 signatures which resulted in a debate in Parliament. According to Christina the drug company has said it is working towards a solution and will be meeting with the NHS.

Christina said her and Luis father’s lives changed forever when they were given the cystic fibrosis diagnosis. Luis needs constant care – three to four hours a day every day. Last year he spent a month in King’s College Hospital after a lung operation. He has to take antibiotics every day and great care has to be taken so he doesn’t pick up infections.