Tackling epilepsy at the Tory Party conference
This week I will be attending the Conservative Party Conference in Manchester with the chair of our trustees at Epilepsy Society, Helen Pernelet.
Our purpose is clear and defined. We want to raise the profile of epilepsy at a political level. We want government to better understand and prioritise the condition. We want to make sure people with epilepsy receive the services and treatments they need and deserve.
From David Cameron through to the backbench MPs, I don't think Conservative party members will be surprised to find us banging on their door - again. Earlier this year, former MP for South Thanet Laura Sandys and our own MP in Buckinghamshire, Cheryl Gillan, led a debate in the House of Commons calling on government to address the major challenges facing people with epilepsy.
Moving epilepsy up the political agenda
The time has now come to ramp up the pressure and the Manchester conference provides a perfect platform to create a head of steam around a condition which is too often consigned to the small print.
Epilepsy affects 1 in 100 people. 87 people are diagnosed with the condition every day. 1,000 people in the UK die each year from a cause linked to epilepsy.
At Epilepsy Society we don't want small-scale solutions that go half way to addressing a condition that claims the lives of more people each year than AIDS and cot deaths combined. We want action. And we want it now.
Pioneers in research
We have always been at the forefront of research. In the early twentieth century, long before the term 'gene' was coined, one of the first doctors at the Chalfont Centre where our medical and research services are based, wrote a seminal book on epilepsy.
Today, with that same pioneering spirit, our researchers are leading the way in genetic research, unpicking the underlying architectures of the epilepsies to understand the causes and identify better treatments. But there can be barriers to innovation.
We are pioneering precision medicine in epilepsy - very specific medications for specific individuals. This can mean a particular drug for as few as two or three people with a rare genetic mutation. But in these cases we need to look beyond the 26 drugs licensed in this country for epilepsy. This means looking at drugs which are licensed for other conditions such as multiple sclerosis but which we know have the potential to be effective in rare cases of epilepsy.
It can take 12 years and cost £1.15 billion to develop a new drug which is a task on a leviathan scale by any standards. But the frustrations of accessing drugs outside those licensed for epilepsy are proving to be onerous too.
In other European countries, access to repurposed drugs seems to be far more straightforward and immediate, resulting in real change in the lives of patients. In the UK the process is thwarted by the bureaucracy of the NHS which is standing in the way of patients accessing the drugs they need.
We want the government to action accelerated access to clinically effective drugs that could help to reduce seizure frequency and severity in those with rare epilepsies and optimise the lives not just of them but also of their families, friends and carers.
Repurposing drugs is not new and it is not confined to epilepsy. Viagra started out as a drug for hypertension and angina. Gabapentin and pregabalin are now used for neuropathic pain and anxiety but were primarily for epilepsy. With our rapidly advancing knowledge of genomic medicine, we need to be looking at existing drugs which can be developed for other indications such as epilepsy. We need accelerated access and we need it today, not tomorrow.
Our second ask is reinstatement of the retired indicators for epilepsy, used to incentivise GPs to prioritise people with epilepsy. Originally there were three indicators for epilepsy. Now there is only one asking GPs to establish and maintain a register of patients aged 18 or over who are receiving drug treatment for epilepsy.
It was an NHS decision to scrap the incentive to identify patients who have been seizure free for 12 months and the incentive to provide pre-conception counselling to women of child-bearing age with epilepsy. It doesn't mean that this doesn't happen anymore. It just means there isn't a box to measure performance against.
The indicators provided very real incentives to prioritise people with epilepsy and also vital data about the numbers of people with epilepsy and where they are. They also told us what percentage of people were achieving seizure freedom. We need these figures to help us configure the appropriate services for people with epilepsy.
I am excited about the opportunity the Conservative party conference provides. I am excited that we will be able to engage at a level where we have a real chance to influence people who have the power to bring about change.
There are over half a million people in this country with epilepsy. In our conversations with politicians at the Conservative Party conference, Helen Pernelet and I will be representing every single one of them.