Luis’ story

Nine year old Luis Walker has cystic fibrosis (CF), a serious genetic condition that causes mucus to build up in his body making problems for his lungs, digestive system and sinuses. CF gets worse with age and brings even more complications. There is no cure.

A drug called Orkambi can help to slow the progression, but Luis and thousands of other people in the UK were unable to access it for four years because the drug company, Vertex, demanded an extortionate price from the NHS.

When Vertex walked away from the negotiating table they hadn’t bargained on being taken on by Luis! Instead of doing nothing, Luis campaigned to make sure he and others could get the treatment they needed - and won.

Luis wrote to (then) Prime Minister Theresa May and to the drug company, started a petition and appeared on national news. But the company wouldn’t budge. So Luis’ mum, Christina, and a group of parents approached Just Treatment. Together they launched Plan B On Orkambi, demanding the government take action to make Orkambi available on the NHS by any means necessary - even if it meant overturning Vertex’s patent monopoly using tool called a Crown Use licence.

Luis and Christina meet Labour leader Jeremy Corbyn.

Amid an explosion of national press coverage, a parliamentary debate on the issue and a Commons Health Select Committee inquiry, the parents discovered regulated, high quality generic versions of Orkambi being made in Argentina. They decided to set up a buyer’s club to privately import the drugs in a desperate attempt to treat their kids.

In June the government finally agreed action was needed. Health minister Seema Kennedy acknowledged that the government had a “moral obligation” to explore using a Crown Use licence or large scale clinical trial to sidestep Vertex’s patent.

In the following weeks, opposition leader Jeremy Corbyn pledged that a Labour government would use a Crown Use licence to make Orkambi available - with an election looming, that meant pressure on Vertex. Just weeks later, Vertex CEO Jeffrey Leiden flew to the UK to meet Health Secretary Matt Hancock, with both parties saying they hoped a deal would be reached “within weeks”.

At the end of October a deal was announced after Vertex finally dropped the price. After nearly four years, Orkambi will finally be available to all those who need it on the NHS in England, Wales and Northern Ireland. Luis and Christina hit the headlines again, appearing on Victoria Derbyshire and This Morning.

While we’re still celebrating this fantastic news, Vertex should never have been allowed to hold patients’ lives to ransom for so long. Hundreds died in the time it took for the company to offer an acceptable price to the NHS. During that time Vertex’s profits soared - it could easily have made this drug available sooner had it wanted to.

Thanks to Luis and all those who stood up to Vertex, Orkambi will now be available to people who need it in the UK. But other drugs remain unavailable on the NHS because of the price-tag. The drive for excessive profit should never be allowed to prevent patients like Luis from accessing the medicines they need - we won’t stop campaigning until we have a system that delivers for everyone.

Luis meanwhile has one Christmas wish - and that’s for everyone all over the world with CF to get the medicines that can help them. If you’re in a country without access and want to know about generic alternatives contact www.cfbuyersclub.org

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