| International Advocates Meet Congress | |
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International public health advocates in the field of headache disorders met in Washington, D.C., February 7 - 10. hosted by MAGNUM, The National Migraine Association. These advocates are members of the World Headache Alliance (WHA) Council, a collaborative alliance of nongovernment organizations (NGOs) from 26 countries. The agenda for this meeting included:
- Their Council Board meeting, which will be extended over several days.
- A special reception and Migraine Awareness Art Exhibition at the Italian Embassy's Bicultural Institute. The art exhibition will feature the award-winning artwork of artists & Migraineurs Michael John Coleman and Janet McKenzie (the painter the Vatican selected to paint the Millennium Christ painting).
- MAGNUM officers will be taking the WHA advocates to meetings with members of the U.S. Congress:
Terri Miller Burchfield, MAGNUM's Legislative Director, noted, "We are grateful for the kind support by the Embassy of Italy for the use of their Cultural Center. This kind cooperation and support for a project that reaches out to those who suffer from head pain offers us a venue to reach an audience on both a national and global scale."
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| WHA Council & MAGNUM staff after eventful meeting with Senator John Warner's Deputy Legislative Director Christopher J. Yianilos in front of the Senator's Capitol office. Pictured above are (L to R) MAGNUM's Susan Moeller Denny & Terri Miller Burchfield, Puerto Rico’s Luis Taboas, Senator Warner's Deputy L.D. Yianilos, MAGNUM's Michael John Coleman, New Zealand’s Ann Hallam, England’s Dr. Tim Steiner, and Canada’s Pierre Lefebvre. |
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Photo © MAGNUM, 2003. All rights reserved. |
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| MAGNUM's Board Officers Terri Miller Burchfiel (L) & Michael John Coleman (R) with U.S. Congressman James P. Moran (C) of Virginia, in his Capitol Hill Office. |
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Photo © MAGNUM, 2003. All rights reserved. |
From the Advocates:
I had the opportunity to interview some of these wonderfully dedicated advocates. Their words brought me a renewed sense of hope for all of us with cluster headaches, Migraine disease, and other head pain disorders. Here are some excerpts from those interviews.
Dr. K. Ravishankar of The Headache and Migraine Clinic, Jaslok and Lilavati Hospitals, India. Dr. Ravishankar is a physician and a member of the WHA Council.
"We're planning for a patient organization meeting at the IHC (International Headache Congresss) in Rome (September, 2003). We feel that networking patient organizations in different countries is the best way to effectively address the burden of headache in different countries. Patient organizations have a significant role to play in reducing the burden of headache disorders world-wide. Migraine and headache disorders is one of the few places in healthcare where non-medical people can play such a large role. A lot has come about in the last decade. Head pain is now much more treatable than 10 years ago.
"Harm can be done by treating wrong way. If wrongly consumed, over-the-counter (OTC) drugs end up with people in rebound. Then the initial care becomes the cause of headache and transformed Migraine. It can be a great difficulty getting off analgesics.
Headache disorders need to be taken more seriously than they are. In addition to educating doctors treating patients, the message needs to be spread that a lot of people suffering do not know where to go. Mismanagement takes place. Recognize who is the right doctor. Less than 50% (of sufferers) seek treatment, then go to wrong doctor. Somehow get message across to a wider audience. Headache disorders affect people peak of life when most they're most productive. A huge problem is that this is invisible misery. When dealing with invisible, its hard to prove."
Dr. Fred Sheftell, Chairman of the WHA; New England Center for Headache, Stamford, Connecticut.
Dr. Sheftell is quite concerned
about the lack of any FDA regulations requiring commercials for OTC medications
to address their potential hazards. He points out that when we see a television
for a prescription medication, the script must include warnings about common
side effects and potential health problems that can be caused by the medication
being advertised. On the other hand, there are OTC medications that can cause
just as much harm, but their commercials are not required to include such
warnings.
He also commented:
"We need to identify patient advocacy groups around the world and bring them together to know each other and help each other out, to reach out and help younger organizations. Dr. Tim Steiner and the International Headache Society (IHS) have been working on this also. Here we are at a meeting of the WHA with representatives from 26 countries, discussing the global burden of disease. Pain cuts across geographical, racial and ethnic boundaries, all struggling with the same issue. We must establish and promote a global disability agreement with the World Health Organization (WHO).
"Headache disorders are worthy of more attention and better treatment. The burden of illness secondary to Migraine is greater than that of stroke, epilepsy, Alzheimer’s Disease, Parkinson’s Disease, and MS combined. Stroke risk in women ages 20 to 40 is 10 per 100,000. That doubles in women who have Migraine without aura and is even higher in women who have Migraine with aura. Smoking compounds that even more."
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| Dr. Fred Sheftell, WHA Chairman, Director of the New England Center of Headache, & MAGNUM Medical Advisor Chair seen here in Washington, DC, during telephone interview with About.com's Teri Robertduring the World Headache Alliance council meeting. |
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Photo
© Michael John Coleman, 2003.
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Ms. Annette Hallam, New Zealand Migraine Sufferers Support Group: WHA Board of Directors Member and Trustee.
"In New Zealand and many other countries, we need recognition from government. We don't see the recognition from our government officials that you and MAGNUM get in the United States.
"There is also the need to educate the doctors. We're presently working to educate doctors and patients especially about adolescent Migraine and Abdominal Migraine.
Summary:
This WHA meeting in DC, the advocates' visits to members of Congress,
and the gracious hospitality of the Italian Embassy, comprised an event that
signals hope for all sufferers of head pain disorders. That Senators Warner and
Allen and Congressman Moran made time to hear the concerns of advocates from the
U.S. and other countries signifies a growing awakening among our legislators. I
applaud everyone involved in this undertaking and urge you to visit the web
sites of the organizations involved. They're supporting us, and they deserve our
support in return. To all who work so endlessly and tirelessly on our behalf,
thank you.
~ © Teri Robert, 2003
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