Epigraph Vol. 12 Issue 3, Summer 2010
Report on the Aftermath of the January 12th Earthquake on the North American Commision Hispaniola Project
Since June 2008, the North American Commission through the Hispaniola Project made significant progress toward improving care of the population living with epilepsy on the Island of Hispaniola shared by Haiti and the Dominican Republic. Our projects included the opening of the first epilepsy clinic in Haiti, the opening of an epilepsy surgery center in Santo Domingo and an assessment of the prevalence of epilepsy and neurocysticercosis in the population living in rural areas of the Dominican Republic. This was halted by the natural disaster that occurred on 12 January, but we are happy to report that our projects are progressing and have made a significant difference in the region.
Although located within five minutes of the Presidential palace, the epilepsy clinic (CLIDEP, Clinique d’Épilepsie de Port-au-Prince) remained standing after the earthquake. The International League Against Epilepsy through its North American Commission has provided financial support for its repair and through a generous contribution from Astro-Med Inc provided the clinic with a portable EEG machine to perform EEGs in hospitals and rural areas. We also provided long-term support needed to maintain clinical services that have been overwhelmed by the number of head injuries, poor access to medication and extremely stressful living conditions. It is estimated that in the Port-au-Prince area there has been more than 6,000 people assessed for acute neurological problems by the international medical teams, including neurologists and neurosurgeons from Santo Domingo who helped train the epilepsy nurse and EEG technologist and who were involved in the neurocysticercosis project. For instance, CLIDEP, which re-opened 25 January welcomed more than 1,000 patients in the first month it re-opened, which is more than the number of patients seen in its first 12 months of operation.
Accompanied by an EEG technologist, David Hebert, I was able to visit the clinic in March 2010 to help set-up the portable EEG system and to bring more than $150,000 of medication donated to the Commission by Novartis Canada, UCB Canada and Apotec Canada. This will have a significant impact in preventing neurological damage and potential risk of death from break-through seizures that might occur when patients lose or use up all of their anticonvulsant medication.
According to local neurosurgeon Alix Elie, MD, director of the Port-au-Prince Epilepsy Clinic, he and his staff will continue to provide epilepsy care using the clinic site and the playground of a neighboring school.
Dr Elie also reports that the destruction of local pharmacies has created an urgent need for epilepsy medications. “Even if the drugs were available,” he says, “epilepsy patients in Haiti, for whom medications are an economic hardship to begin with, are now even less able to afford them.” Contributions from the professional epilepsy organizations and their members will go toward the purchase of medications for distribution by the clinic.
We need to continue to support this special campaign to assist CLIDEP as there are now more organizations pulling out or at least reducing their presence in Haiti. Volunteer organizations have used CLIDEP to perform neurological assessments of the patients they evaluated and this has tremendously increased local demand among a population that cannot afford health care. Haiti needs projects like CLIDEP that are sustainable by local personnel but this requires significant knowledge transfer and financial support. To do so, the North American Commission has established a very successful visiting professorship program and intends to follow this up by providing teleconferencing support to the centers involved.
There are still many unmet needs for epilepsy care in Haiti. CT scans are performed only in a private clinic and is only available at a cost. The nearest MRI is in the Dominican Republic. Thus epilepsy surgery cannot be done in country. However, Diones Rivera, neurosurgeon and leader of the Epilepsy Surgery project in Hispaniola, has agreed to provide surgical care to Haitian patients that require such intervention through the Dominican public system.
In the Dominican Republic, the Dominican Epilepsy Club, local chapter of the International League against the Epilepsy headed by Dr Diogenes Santos-Viloria has made significant progress as well with the help of Dr Diones Rivera Mejía.
Through the financial support of the North American Commission, thirty-nine patients with epilepsy have been screened for the presence of Neurocysticercosis, as a cause of their epilepsy in four provinces of the South Region of the Dominican Republic, adjacent to Haiti, a region considered endemic. Patients have been transferred to Santo Domingo to obtain brain imaging and blood tests as well as when necessary appropriate treatment for their seizures. The investigation, which was halted following the earthquake, detected ten patients out of the first 39 tested, with calcifications on Computed Axial Tomography. Up to now, 75 patients have been tested. We want to reach 100 patients this year to confirm the trend and then establish a protocol to improve epilepsy care to this population. Dr Garcia from Peru and Dr Burneo from Canada have agreed to collaborate with us to develop this next phase of the project to better understand local risk factors and try to eradicate neurocysticercosis from the region.
The creation of the Center of Epilepsy Surgery in the Dominican Republic aims to provide optimal surgical care for the patients with refractory epilepsy with the help of Cedimat (Center of Diagnosis and Medical Imaging), which was founded by Professor Taveras, former head of Radiology at Harvard Medical School. With Cedimat, patients will be able to obtain a 3T MRI, functional imaging and magnetoencephalography as part of their investigation. To provide these services to the population, Drs Santos Viloria and Rivera, with the support of the North American Commission of the ILAE, have contacted the National Insurance of Health of the Dominican Republic (SENASA) to help them realize the importance of these procedures for patients and the long-term socio-economic benefits of such a program for the local Public Healthcare System. A state of the art video-monitoring room is also available. This is the product of more than ten years of work of the members of the Dominican Epilepsy Chapter who has supported Dr Rivera’s efforts to obtain additional expertise with a fellowship at the Epilepsiezentrum in NeuroZentrum, Freiburg, Germany followed by visits in Mexico with Dr Federico Velazco, in Colombia with Prof Jaime Fandiño, and in Canada with Drs Claude Mercier and Lionel Carmant. In addition, the group has recruited two neuropsychologists, Heidi Guerra, who trained in Barcelona and Evelyn Santos who also trained with Prof. Jaime Fandiño’s team in Colombia. The group has performed their first two EEG confirmed surgeries in patients with lesional epilepsies and is looking to expand the program with patients with temporal lobe epilepsy.
In conclusion, despite a difficult start to 2010, the Hispaniola project is continuing to progress and we expect all three phases of the project to be completed by the end of the year.
Lionel Carmant, Project Leader, North American Commission
Alix Elie, CLIDEP Director
Diogenes Santos-Viloria, Dominican League Against Epilepsy President
Diones Rivera, Dominican Epilepsy Surgery Group
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