Abstract
Bridging the gaps in headache care for underserved populations
It is with great pleasure that I write to you about activities I plan to help building as a member of the Board of Trustees of the International Headache Society as well as some of my previous history in the headache field.
I graduated from medical school in 1995, finishing my neurology residency program in São Paulo, Brazil, where my PhD was also achieved. Significant inspirations for me were Drs Eliova Zukerman, Wilson Sanvito and Paulo Monzillo. Next, I moved to the United States for a fellowship with Stephen Silberstein, feeling very fortunate to have other dear mentors and friends at the Jefferson Headache Center, Philadelphia: William Young, Todd Rozen, Margarita Sanchez del Rio, Charles Siow, Alan Stiles, and all the team.
Back to Sao Paulo, Brazil, and the past 15 years have been dedicated full time to the headache field, in clinical practice, academic training, public awareness, and research.
I have been involved in headache research since medical school, after my first publication and oral presentation in a headache meeting in 1995; 22 years later, more than 100 published papers are listed in PubMed, 28 articles in Cephalalgia, book chapters, and a dedicated book for patients. Education has been a relevant issue; 11 master/doctorate students have been trained, from basic to clinical aspects of headaches. A recently developed e-learning program expanded our capability to diffuse headache knowledge to health professionals. As an early adopter of technology, a headache diary was developed (Diario da dor). My internet content has gained more than 10 million individual page views in the past years.
Considering the NIH annual budget for health science research is around US$30 billion, pharmaceutical companies another US$60 billion (plus US$90 billion in marketing!), not to mention US$600 billion spent annually in the US for defense/war, the same proportion and amounts are estimated for the rest of the world. Headaches, although ranked high in disability, get ridiculously small amounts of this share. Medical innovation should be patient centered, but unfortunately is not, being deviated to financial profits. Who is left behind? Headache sufferers!
My main goals in headache medicine are to help provide evidence for cost effective treatments focusing on patient’s needs, and to search for better ways to deliver headache care.
I believe our major pitfall in the area is balancing between the efforts of cutting-edge scientific progress and the needs of the unrepresented, poorer populations worldwide. I hope other Latin American and worldwide colleagues join me in this passionate task so we can move the field on in this direction.
Hospital Israelita Albert Einstein, Sao Paulo, Brazil
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A “happy” International Headache Society
When writing these lines, I am what you might call a “happy” Honorary Secretary of the IHS (also called the General Secretary). Our Society is in a better shape than ever. We have the highest number of members for over a decade and the highest (positive!) budget. We have seen our International Headache Congress (IHC) in Vancouver and just received the evaluation results. The IHC was rated as excellent by a vast majority, and many visitors intend to take an active part in our next IHC 2019 in Dublin, Ireland.
Since my last Board Walk, IHS has established or consolidated new activities. We now regularly have very active academic Headache Academies for young researchers both in the USA (called IHA) and in Europe (called iHEAD). We also have an ongoing Headache Master School programme; the next one is planned for Australia this year. We have a lot of educational activities going on, including visiting professorships (the recent ones being in Iran, Pakistan, and Colombia) and grants for students and young colleagues. Another new initiative was the first International Headache Society Global Patient Advocacy Summit (GPAS) in Vancouver during the IHC, which brought together all relevant stakeholders in the field of headache medicine. From this, a Global Patient Advocacy Coalition (GPAC) has been formed, which had its first meeting in London in January. The IHS is the leading society under whose umbrella all worldwide activities on headache should take place.
All these activities cost money, and we were able to further increase the income of IHS by unrestricted grants from some companies and by income from the IHC and membership dues. Our balance is positive, and we have a lot of reserves. This will enable us to make headache research and headache medicine more visible and more accepted worldwide. However, we should be aware that we rely a lot on funding by the industry. This is not only problematic because times can be different, and we have had times when funding was very restricted, but also problematic from an ethical point of view. We have to consider that the public might regard the activities of IHS as driven by the pharmaceutical companies as long as we are not completely transparent. Therefore, I am grateful that our Ethics Committee is currently developing standards for the cooperation with the pharmaceutical industry.
Another problem might occur in the future if we do not continuously support young people in being active in IHS. One of the complaints from the attendees of the IHC in Vancouver was that too often the same “old” people give the same talks. We have an active Committee for juniors, so we should not be afraid to include them in our plannings.
As Honorary Secretary, it is my job to deal with the “daily business” of our society. This means a lot of email conversation all over the world, and discussing new projects in close cooperation with the President and with Carol Taylor, the society’s employed secretary. And even after 6 years, this is still fun and satisfying.
I am looking forward to continuing my work for another 2 years, together with the President and with Carol Taylor. So, any questions or ideas can be forwarded to me via email, and I will be happy to help.
University of Münster and Krankenhaus Lindenbrunn, Germany
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