Migraine - an overlooked neurological disorder Elena Ruiz de la Torre Zurich, October 10, 2017

What I Stand For President of European Headache Alliance The European Headache Alliance (EHA) is a non-profit, patient umbrella group which was launched in 2006 Together with our partner organisations, EHA voices the views and concerns of headache patients across Europe Our aim is to promote awareness and understanding of migraine and other primary headache disorders and seek improved access to appropriate diagnosis and treatment for all.

Migraine as shown in Media Not what is is shown in newspapers Real: Unable to call, move, tired, weak, see Nausea and vomiting Brain slower Huge headache Act of faith to believe how awful..

My journey and awful experiences The Reality: Not what is is shown in newspapers Real: Unable to call, move, tired, weak, see Nausea and vomiting Brain slower Huge headache Act of faith to believe how awful.. For society it is an act of faith to understand how awful migraine can make us feel

The In-Between Matters Migraine attacks are only part of the picture that leads to the direct and indirect impact – stigma, fear etc. https://migraine.com/blog/memorable-migraine-stories/5/

This is also me, an active, functioning professional, normal We have an episode and 20-48 hours later – we are normal We are perfect people when we don’t have the attacks We are concerned about the stigma of migraine, and the risk of labelling from employers and loss of work We are perfectionists, we are active – that’s a trigger Migrainers don’t want to confess they suffer from migraines – nothing, they are hidden

Diagnosis & important role of Carers How important it is to get a good diagnosis How little knowledge there is about Migraine How much our life is conditioned by the Migraine How disabling and incapable we are during a Migraine Attack How important a Caregiver is for us at this moment

Migraine: Scale and Burden Migraine is one of the top 10 causes of years lived with disability for men and women according to WHO Migraine is a complex and disabling neurological condition that produces substantial disability in nearly all facets of life More than 90% of sufferers are unable to work or function normally during their migraine Around 190 million work days are lost every year in the EU due to migraine Migraine on its own is the cause of 1.3 per cent of all years of life lost to disability   Source: European Brain Council. Migraine Fact Sheet. World Health Organization. Headache disorders L.M Bloudek. Cost of healthcare for patients with migraine in five European countries: results from the International Burden of Migraine Study (IBMS). J Headache Pain. 2012 Jul; 13(5): 361–378.

Stigma associated with Migraine Misunderstanding, lack of respect, refusal of understand, rejection

Challenges with Current Treatment Options Frequent use of medications to treat headaches when they occur can lead to medication-overuse Up to 80% of patients discontinue migraine prevention medication within a year Currently available treatments have generally been repurposed from other areas rather than designed with migraine as a target  Patients are always looking forward to new treatments, always looking for something new to come to the market…we are always desperate    Patients are desperate for new treatments that work and are safe and tolerable.

Patients Lost to Treatment A key message across stakeholder platforms From an academic article in the British Journal of General Practice “GPs do not appreciate the impact of migraine and patients do not consult because of poor previous experience” From blog post on Harvard Medical School website “I think 80% of all migraineurs can be effectively helped, but only about a quarter of them are effectively helped at the present time,” Dr. Egilius Spierings, professor of neurology at Harvard Medical School. From a patient story on Migraine.com, an online migraine community “I have decided that I need to take charge and to not rely on my doctors anymore (I realize I should have done this a long time ago).” From Migraine.ie, Irish Patient Advocacy group website “In Ireland, 12-15% of the population have migraine. Only about half of these 500,000 people are actually diagnosed and even fewer are receiving treatment for their condition.”

Call To Action As journalists, you can help: Patients need information about the illness, they need to understand how to avoid attacks and the importance of not overusing medication Patients, and the Public must understand how the illness works and its effects Patients need to be mobilized to ask for Their right to proper treatment Recognition of their illness without stigma and misconceptions Payers and policy makers need to know the economic impact of migraine on healthcare systems and on workplaces  

THANK YOU