Christina and Luis's story (UK)

My name is Christina Walker, I’m Luis’s mum and I’m a trade show organiser and a Just Treatment patient leader.

Luis is ten years old, he lives in East Sussex and has cystic fibrosis. Cystic fibrosis is a life threatening condition where the body produces a thick, sticky mucus that can clog up the lungs. His favourite subject at school is Maths, in his spare time he enjoys playing sport and video games. 

The battle for access to the drug Orkambi was four years long and had a big impact on both of our lives. Aside from all the time taken and the emotional strain of campaigning, Luis contracted a serious lung infection during that time which threatened his life and may well have shortened it.

“The US administration and American pharmaceutical lobby have made it clear that they want to use a trade agreement with the UK to remove drug price controls”

The reason for the delay in access to Orkambi was simple: price. The drug manufacturer, Vertex Pharmaceuticals, set a price of over £100,000 per patient, per year - for a drug that needs to be taken for life. This put the medicine out of reach of the NHS and a stalemate in negotiations followed, during which time Vertex refused to work with the medicines appraisal body NICE. 

A Commons Health Select Committee inquiry wrote that there appeared to be ‘exploitation of a monopoly position’ by Vertex. However, the company only dropped its price when patients called for the company’s monopoly to be overturned using a legal tool called a Crown Use licence, and began to privately buy cheap generic copies of the drug from overseas. In the end, the Government publicly accepted its moral obligation to take action and Vertex was forced back to the negotiating table. 

The US administration and American pharmaceutical lobby have made it clear that they want to use a trade agreement with the UK to remove drug price controls like those that enabled us to force down the price of Orkambi. If the NHS is forced to pay the sort of prices that drug companies demand, we will see an escalating drugs bill and many more battles for access. The NHS simply cannot afford to pay these unjustified prices - doing so would mean less money available for drugs across all disease areas. 

Recently, the NHS added Vertex’s latest cystic fibrosis drug, Kaftrio, to it’s deal - fantastic news for patients. However, the agreement lasts for four years and if a US-UK free trade agreement has been agreed during that time then there could be disaster ahead for patients and our health service. 

US negotiators are pushing for the inclusion of conditions for ‘full market access’ and ‘competitive pricing’. This would threaten the ability of NICE to control the price of drugs like Kaftrio and make the pharmaceutical ‘market’ in the UK much more similar to what we see in the US. Kaftrio is marketed at a price of $311,000 per year in America. If the NHS had to pay US prices for Kaftrio it would cost the health service more than $2bn every year to treat the  7,000 eligible UK patients. That’s, a completely unsustainable amount when the current total drugs budget for NHSE is around £17bn - and would undoubtedly mean patients like my son Luis being denied access.

“The ability to control drug prices is at the centre of our public health system”

One day we hope a cure will be found for cystic fibrosis, and for many other kinds of life-threatening health conditions - but if the NHS can’t afford to buy them, it will be catastrophic for our society. The ability to control drug prices is at the centre of our public health system, without it patients face exclusion from or rationing of treatments and inevitably an insurance-based system with co-pays, that would be hefty for the chronically ill, especially those with high priced treatments like Kaftrio. 

The independence and exclusion from trade deals of UK drug purchasing and price control mechanisms must be specifically and irrefutably enshrined in law to protect the affordable supply of current and future drugs. Peers must act on this matter as the last defenders of public health in our country.