Julian’s York Press column: Everolimus NHS campaign and the Autumn Statement
December 2, 2016
Our NHS is vital to providing security and peace of mind to all families nationwide, and symbolises our commitment to care for each other as a community. This is particularly important to families whose loves ones suffer from rare diseases, as access to appropriate medicines is often difficult.
This is why I have taken a leading role within Parliament in the ongoing campaign to get the life-saving drug Everolimus routinely prescribed by the NHS to those suffering from inoperable brain tumours caused by Tuberous Sclerosis Complex (TSC), after being contacted by one of my constituents whose young son suffers from the disease.
TSC is a potentially life-threatening genetic disease that is present from birth and causes non-cancerous tumours to develop in different parts of the body. The tumours most commonly affect the skin, kidneys, heart, eyes, lungs and brain which results in various health problems. In 2011, Everolimus was approved for use on an EU-level to treat brain tumours, and despite assurances being given that it would be available from NHS England by this April, this has not happened. If these conditions are left untreated, patients suffer from neurological deterioration, with most dying within two years. However, with this treatment, up to 95% go on to live long, healthy lives.
Due to the fact that so few people suffer from this illness, it is accorded lower priority under the drug funding allocation model, despite costing less than a course of dialysis for a patient with kidney failure. It is difficult to even try and put yourself in the shoes of parents up and down the country whose children are suffering needlessly when such effective treatment is available.
After meeting with families and supportive MPs in Parliament, I have teamed up with fellow Yorkshire MP Greg Mulholland to lead a cross-party group of Parliamentarians in writing formally to the Chief Executive of NHS England, Simon Stevens, urging him to make Everolimus available to people suffering from TSC-related brain tumours. Our letter also raised concerns about the prioritisation process for drugs, and how it disadvantages medicines for very rare diseases.
As well as drumming up support for this incredibly worthwhile campaign, I have been watching Westminster begin to digest Philip Hammond’s Autumn Statement. I was glad to see the Chancellor recognise the status of the University of York as a national and international centre of excellence, announcing funding for a new scheme which gives our city a leading role in generating new skilled jobs and prosperity across Yorkshire and Northern England. The university has been chosen to lead a consortium examining Bioeconomy in the North, bringing together expertise from across the region.
Not everyone will be familiar with the term ‘Bioeconomy’; essentially, it is the sector which focuses on developing sustainable natural resources to produce energy, food and materials. It is estimated that the Bioeconomy will soon sustain some 230,000 jobs across our region, and contribute nearly £50 billion to the economy of Northern England. The world market for sustainable food, fuel, animal feed and chemicals is huge and growing every day, and is something the UK has to succeed in if we are to maintain and increase our prosperity. The choice of York as the hub for this audit represents a fantastic opportunity for our city to shape the direction of one of the most innovative parts of the national and global economy.
The universities sector makes its most powerful contribution to our economy and general living standards when we get its research out into the workplace and factory floor, raising productivity, wages, and creating new jobs. I was therefore very pleased to see the Chancellor also announce new measures to get UK universities, including York, working with businesses to commercialise their research. He backed this with £110 million of funding until 2020-21, and ministers will be engaging further with universities in our region to see how this can be delivered.
However, this good news comes alongside disappointment at the fact that plans for the much-needed upgrade of York’s northern ring road were again not awarded the necessary funding. This has only increased my determination to pursue the government on this matter until our city gets the road infrastructure it needs.
