Planning the Future for the Epilepsies
My name is Dr Rhys Thomas1 and I am a Consultant Neurologist2 and Epilepsy Neuroscientist3 from Newcastle University4, UK5. I am on the Council for the ILAE6 (International League Against Epilepsy), on the Board of Trustees for Epilepsy Research UK7, and Disability North8, and also work closely with SUDEP Action9, who support people who have lost a loved one with epilepsy.
You'll find me working as the Associate Editor10 of Practical Neurology11, as the Web Editor12 of Seizure13, and on the Editorial Board14 of Clinical Medicine15.
The beginning of the year is a great time to compile lists, rankings and proffer awards from the former. I am not tempted to laud my ‘patient of the year’, nor hand out laurel wreaths to ‘Anti-Epileptic Drug of the decade’ – but I wanted to tell you about my favourite conference. I understand if this may sound like an underwhelming topic – but please hold on.
Gilbert K Chesterton17 the English writer philosopher, lay theologian, and critic from the turn of the last century is quoted as saying:
“I've searched all the parks in all the cities and found no statues of committees.”18
He is of course wrong – Rodin’s the Burghers of Calais19 (prominently sat outside the Palace of Westminster, London20) is a pretty fine approximation of a committee – albeit one under facing extreme duress (volunteering for certain death). Or you have the General Front Committee for Yangtze Campaign statue at the Dujia Battle Memorial21, China22. But you would be hard-pressed to find a statue of a conference.
In September 2019, patient-groups, scientists, clinicians, pharma companies and tech gurus gathered in Washington DC23 to address some unfinished business. They had met five years prior to set out a road map for precision medicine24 for the epilepsies. Leaving a gap between meetings was well-judged – because much happened!
We had stories of great personal triumph from patient advocates and great philanthropy from patient groups. We had examples of synergy between clinicians and academics. We saw the potential of harnessing big data for rare diseases and for common outcomes. We relished in presentation after presentation where targeted treatments 27 were designed and trialed. The talks ran to time, the questions from the audience were astute, the chairs showed great humour, and the delegates were engaged. This was truly inspirational in a way that even the most introverted and British of us all had to acknowledge. The quality of the over-coffee and corridor conversations was worth the airfare alone.
A few questions were left unanswered:
- How can we as a society support the substantial costs of treating very rare diseases?
- How can we ensure equity of access 28 to these very expensive treatments?
- What do early-onset epilepsies look like if and when the epilepsy is treated?
- What side-effects would we be prepared to tolerate for a therapy that was 100% anti-seizure?
When visiting America in the 1980s as a boy it felt like the eight-hour flight had in fact fast-forwarded time and we had landed a generation in the future. The country was technicolour where England was drab. The language, the attitude, and the consumerism was all turned up to full blast; it was a feast for the senses. America – before the internet – was a foreign land. It felt, in some ways that this meeting showed up a glimpse of a future not commonly seen at home. It, therefore, took a great deal of willpower not to be intimidated by the tales of this conference from Washington. It will take effort to ensure that we use the 2019 conference as a springboard and that we do not leave the inspiration in a foreign land.
Rhys Thomas
E: rhys.thomas@ncl.ac.uk | W: ncl.ac.uk
