Headache advocacy

This supplementary issue of eNS is dedicated to the most common of the neurological diseases - headache. The inspiration for this supplement came from a joint collaboration between the International Headache Society (IHS), IHS-Global Patient Advocacy Coalition (IHS-GPAC), World Federation of Neurology (WFN), and the African Academy of Neurology (AFAN). In 2021, these organizations launched an annual headache educational symposium in Africa designed to raise the level of knowledge on the evaluation, diagnosis, pathophysiology, and management of primary and secondary headaches in the outpatient and emergency room settings. Local, national, and international speakers as well as patient advocates participated. During the first symposium, a total of 551 clinicians from 71 countries, with over 75% from Africa, participated. More than 80% agreed that the educational content was relevant to their practice and the same percentage felt more confident in evaluating and diagnosing patients with headache. In light of the global Covid-19 pandemic, the virtual nature of the program enabled the participation of many more learners and speakers than would have been possible with a live meeting. The success and impact of the first symposium prompted the decision to make this offering an annual event. The second virtual meeting in April 2022 realized a 40% increase in attendance (834). The majority of the participants (78%) were from Africa, with 32/54 African countries represented. Notably, there was a 477% increase in the number of resident and student registrants compared to 2021.

Headache is defined by the International Classification of Headache Disorders (ICHD-3) and classified as either primary or secondary [1]. The phenotypic overlap between primary and secondary headaches and the potential morbidity associated with many secondary headaches requires a heightened index of suspicion, a timely evaluation, and an accurate diagnosis. The low rates of diagnosis among those with the most severe headache disorders such as chronic migraine, also requires knowledge of the diagnostic criteria and accurate history taking skills since there is no diagnostic biomarker for primary headaches [2]. Therefore, the educational sessions focused on simulated history taking, overview of the diagnostic criteria for primary headaches, and an update on the evaluation of secondary headaches in the emergency setting. In addition, the non-pharmacological and pharmacological options now available for the acute and preventive treatment of migraine was also reviewed. It is very clear however that the availability of evidence-based guidelines and major improvements in access to medicines is urgently needed in Africa.

The dramatic mismatch between the number of people with migraine (55 million) and the number of neurologists in Africa (0.01 per 100,000 inhabitants) [3] means that the education of students, primary care clinicians, nurses and other health care professionals should be part of all medical curricula. In addition, nurturing and mobilizing patient advocates to work alongside clinicians will be important to raising awareness and an understanding of the impact of headache and the many treatment options.

While this educational initiative is a good beginning, optimizing the care of patients with headache in Africa will require a measured, calibrated, and staged approach. At a fundamental level, migraine may not be seen as a disease or even a medical condition low and low middle income countries (LMICs), despite the attention it receives in high income countries. The privilege of western societies including mature disease advocacy organizations, access to care, availability of and reimbursement for both standard of care and advanced medicines and technologies, is simply not available in Africa and other LMICs.

These challenges inspired us to continue the headache education program in Africa, as well as invite colleagues from Africa and around the world to provide an update on the epidemiology and treatment of migraine, both outside and inside Africa, and provide a roadmap of what's required to elevate the level of care and reduce the burden of illness of people with disabling headache within Africa and other LMICs.

IHS-GPAC has also identified advocacy for migraine in the workplace as a priority, since the disease prevalence peaks in working aged adults and the functional and financial impact of migraine in the workplace is enormous when measured by absenteeism, presenteeism, and lost productive time [4]. In the U. K, migraine accounts for approximately 86 million lost workdays per year [5]. However, the advocacy needs and priorities in Africa and other LMICs may be quite different and appropriate calibration to the local needs is important.

Finally, with regard to disease advocacy, there is nothing more instructive then a patient‘s personal journey, the barriers that delayed access to care, an accurate diagnosis, access to effective treatment, and achieving a better quality of life. This supplement will showcase an inspiring example of a patient who overcame adversity and became a champion for advocacy.

We are grateful to cover the trajectory from epidemiology, treatment of different types of headache, headache at the workplace, and the important aspect of advocacy especially in particular in LMICs, and advance the efforts in accurately diagnosing and treating patients with headache.