MY EPILEPSY STORY
An interview with: Jorge J. Rodriguez, MD, PhD; Unit Chief, Mental Health and Substance Use; Pan American Health Organization Jorge J. Rodriguez Epilepsia, 55(12):1907–1909, 2014 doi: 10.1111/epi.12582
Tell our readers about you and PAHO as it relates to epilepsy. Who are you? The Pan American Health Organization (PAHO) is an international public health agency working to improve health of the people of the Americas. It was founded in December of 1902 and enjoys international recognition as part of the United Nations system, serving as the Regional Office for the Americas of the World Health Organization, and as the health agency of the Inter-American System. The Organization’s mission is to strengthen national and local health systems and improve the health of the peoples of the Americas, in collaboration with ministries of health, other government and international agencies, nongovernmental organizations, universities, social security agencies, community groups, and many others. The Organization helps the countries and other partners to work together toward common goals. One of these goals is Epilepsy now. Accepted January 30, 2014; Early View publication April 29, 2014. Mental Health and Substance Use, Pan American Health Organization (PAHO/WHO), Washington, District of Columbia, U.S.A. Address correspondence to Jorge J. Rodriguez, Mental Health and Substance Use, Pan American Health Organization (PAHO/WHO), 525 23rd. St, NW, Washington, DC 20037, U.S.A. E-mail: [email protected] Wiley Periodicals, Inc. © 2014 International League Against Epilepsy
The Organization provides technical collaboration in a variety of public health fields. I am the Unit Chief of Mental Health and Substance Use; the neurological disorders are under our responsibility. In that condition, we provide technical support to the countries in Latin America and the Caribbean and coordinate with other institutions. I am medical doctor, graduated in Cuba in December 1972, specialized in psychiatry in 1978, with a public health master’s degree in 1982 and a doctorate (PhD) in Health Science (1991). I began my international career in 1980 in Africa (Sao Tome and Princess) and then continued linked with PAHO during 1980s and 1990s; in 1996 [I] began to work with PAHO in Guatemala, coordinating a project on mental health in population affected by the war, and then I was appointed Advisor on Mental Health for Central America based in Panama. In 2006 I was promoted to Unit Chief of Mental Health based in Washington, DC, U.S.A. As you can see, I am not a neurologist or specialist in epilepsy, but in my professional life epilepsy has become in a priority and one of the most important topic among those themes that I cover at PAHO. I always remember my first contact with a person with epilepsy when I was a young doctor working in a rural area. I was worried and followed up the case very carefully; the clinical outcomes were good and the patient was stable for a long time just taking hydantoin. But one problem in this case which attracted my attention was the stigma that person suffered, and for me to address that condition was more difficult than the clinical work with the patient.
How did epilepsy make it onto the PAHO plan? What are its goals and objectives? PAHO Directing Council, formed by all ministers of health of the Americas, approved a Strategy and Plan of Action on Epilepsy in September 2011 (CD51/10). The Directing Council in its resolution recognized “the burden that epilepsy represents globally and particularly in the Region of Americas in terms of morbidity, mortality and
1907
1908 J.J. Rodriguez: My Epilepsy Story disabilities, as the gap between the number of people with this disorder and those who receive no treatment.” The resolution endorses “the provisions of the Strategy and Plan of Action on Epilepsy and their implementation under the particular conditions of each country to provide an appropriate response to the current and future needs.” The Strategy and Plan of Action is an historical milestone; for the first time the PAHO Directing Council focused its attention on one neurological disorder: epilepsy. The objective is now to strengthen the response of the health sector through appropriate programs for people with epilepsy.
How important is epilepsy for the PAHO agenda? Now, epilepsy is placed in the regional agenda of health under the umbrella of an official mandate of all States of the Americas through PAHO. PAHO must work together with the governments, ILAE [International League Against Epilepsy], IBE [International Bureau for Epilepsy] and other partners in the implementation of the Strategy and present progress reports to the Directing Council periodically.
How can the PAHO initiative be translated into action for people with epilepsy? The answer is implementing the Strategy and Plan of Action; that means working with the ministries of health placing the topic in the health agenda at country level, as well as developing national plans on epilepsy. An initial action was to prepare a regional report on programs, services, and resources in the health sector to address the needs of people with epilepsy. The report created a baseline for the follow-up and evaluation of this matter. Currently, our technical cooperation with many countries is focused mainly in three points: ● Develop a national plan or program on epilepsy. Only one third of the countries have a national plan/program on epilepsy. ● Strengthen the capacity of the personnel in the primary health care (PHC) to deal with people with epilepsy. ● Ensure the availability of antiepileptic drugs at the PHC. In this process of implementation we are working very close with ILAE and IBE; in fact, many efforts are made in a collaborative way.
How will the PAHO plan interface with ILAE, IBE, WHO [World Health Organization], etc.? ILAE, IBE, and PAHO are partners in this initiative. ILAE and IBE participated with PAHO in the process of Epilepsia, 55(12):1907–1909, 2014 doi: 10.1111/epi.12582
preparation, discussion, consultation, and adoption of the Strategy. Carlos Acevedo (IBE) and Marco T. Medina (ILAE) played an essential role in this work. I would like to take advantage of this opportunity to recognize the fabulous support provided for [by] these colleagues and friends. We are moving ahead in coordination with ILAE and IBE; in August 2013, we held a regional meeting in Santiago de Chile sponsored by the Ministry of Health of Chile and the Chilean League Against Epilepsy; it was also a collaborative effort among PAHO, ILAE, and IBE. The objective of this meeting was to present and discuss the most innovative and successful experiences on epilepsy in the region.
What opportunities does your organization have in working with professionals in epilepsy care? (Grant opportunities, working through social media, registries of rare diseases, etc.) There are many windows of opportunity for a strong collaboration with professional organizations at different levels. For instance, supporting trainings, contributing to improve health services, and participating or sponsoring research. The preparation and submission of proposal for grants is also a way to strengthen the cooperation. Another important partnership should be with users and families organizations including them in the process of planning and implementation of actions related to epilepsy.
Any other ideas or items we should include for our Epilepsy readers? Finally, to emphasize that I am very happy and satisfied with this partnership PAHO-IBE-ILAE; for PAHO has been a tremendous experience in terms of coordination between organizations and in the perspective of the technical cooperation with the countries. This work is an example for others and open[s] new windows of opportunity. In formal terms, PAHO signed a Memorandum of Understanding with ILAE and IBE, which created a legal and operative framework for the three organizations. But beyond that we have developed a solid friendship and a cordial environment that facilitate our common work. However, I need to say that there are still many barriers and difficulties, a lot of work to do, and a long way to walk, but we are in the right route. Together we can do it.
1909 Interview with: Jorge J. Rodriguez
Given the challenges for implementing the PAHO strategic plan for the Americas, what can the readers of Epilepsia do to help?
Disclosure The author declares no conflicts of interest. I confirm that I have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.
Disclaimer I think the implementation of the Strategy is a tremendous challenge but all together can contribute to the objectives. Each organization and person, from its position, should address specific goals. As example, advocacy, social pressure on parliaments to update the legislation, mobilization of resources, negotiating with the authorities of government to decentralize and increase the neurological services. The professionals individually and as associations might participate and support the process of training and improving the services. I mean everybody has a piece of cake in this process, an area to dedicate efforts and time.
Editor’s Note: Epilepsia’s Epilepsy Stories is a venue for nonprofit organizations to educate our professional readership about their mission for people with epilepsy from around the world. Many organizations raise awareness about epilepsy including ILAE’s sister organization, the IBE and its chapters. Epilepsia does not endorse one organization over another. If you would like your nonprofit organization recognized, contact us at [email protected].
If our readers want more information on you and your organization what is the contact information? Contact: Jorge J. Rodriguez, M.D., Ph.D. Unit Chief, Mental Health and Substance Use Pan American Health Organization (PAHO/WHO) 525 23rd. St, NW, Washington, DC 20037, U.S.A. E-mail:[email protected]
Epilepsia, 55(12):1907–1909, 2014 doi: 10.1111/epi.12582
This document is a scanned copy of a printed document. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material.
An interview with: Jorge J. Rodriguez, MD, PhD; Unit Chief, Mental Health and Substance Use; Pan American Health Organization Jorge J. Rodriguez Epilepsia, 55(12):1907–1909, 2014 doi: 10.1111/epi.12582
Tell our readers about you and PAHO as it relates to epilepsy. Who are you? The Pan American Health Organization (PAHO) is an international public health agency working to improve health of the people of the Americas. It was founded in December of 1902 and enjoys international recognition as part of the United Nations system, serving as the Regional Office for the Americas of the World Health Organization, and as the health agency of the Inter-American System. The Organization’s mission is to strengthen national and local health systems and improve the health of the peoples of the Americas, in collaboration with ministries of health, other government and international agencies, nongovernmental organizations, universities, social security agencies, community groups, and many others. The Organization helps the countries and other partners to work together toward common goals. One of these goals is Epilepsy now. Accepted January 30, 2014; Early View publication April 29, 2014. Mental Health and Substance Use, Pan American Health Organization (PAHO/WHO), Washington, District of Columbia, U.S.A. Address correspondence to Jorge J. Rodriguez, Mental Health and Substance Use, Pan American Health Organization (PAHO/WHO), 525 23rd. St, NW, Washington, DC 20037, U.S.A. E-mail: [email protected] Wiley Periodicals, Inc. © 2014 International League Against Epilepsy
The Organization provides technical collaboration in a variety of public health fields. I am the Unit Chief of Mental Health and Substance Use; the neurological disorders are under our responsibility. In that condition, we provide technical support to the countries in Latin America and the Caribbean and coordinate with other institutions. I am medical doctor, graduated in Cuba in December 1972, specialized in psychiatry in 1978, with a public health master’s degree in 1982 and a doctorate (PhD) in Health Science (1991). I began my international career in 1980 in Africa (Sao Tome and Princess) and then continued linked with PAHO during 1980s and 1990s; in 1996 [I] began to work with PAHO in Guatemala, coordinating a project on mental health in population affected by the war, and then I was appointed Advisor on Mental Health for Central America based in Panama. In 2006 I was promoted to Unit Chief of Mental Health based in Washington, DC, U.S.A. As you can see, I am not a neurologist or specialist in epilepsy, but in my professional life epilepsy has become in a priority and one of the most important topic among those themes that I cover at PAHO. I always remember my first contact with a person with epilepsy when I was a young doctor working in a rural area. I was worried and followed up the case very carefully; the clinical outcomes were good and the patient was stable for a long time just taking hydantoin. But one problem in this case which attracted my attention was the stigma that person suffered, and for me to address that condition was more difficult than the clinical work with the patient.
How did epilepsy make it onto the PAHO plan? What are its goals and objectives? PAHO Directing Council, formed by all ministers of health of the Americas, approved a Strategy and Plan of Action on Epilepsy in September 2011 (CD51/10). The Directing Council in its resolution recognized “the burden that epilepsy represents globally and particularly in the Region of Americas in terms of morbidity, mortality and
1907
1908 J.J. Rodriguez: My Epilepsy Story disabilities, as the gap between the number of people with this disorder and those who receive no treatment.” The resolution endorses “the provisions of the Strategy and Plan of Action on Epilepsy and their implementation under the particular conditions of each country to provide an appropriate response to the current and future needs.” The Strategy and Plan of Action is an historical milestone; for the first time the PAHO Directing Council focused its attention on one neurological disorder: epilepsy. The objective is now to strengthen the response of the health sector through appropriate programs for people with epilepsy.
How important is epilepsy for the PAHO agenda? Now, epilepsy is placed in the regional agenda of health under the umbrella of an official mandate of all States of the Americas through PAHO. PAHO must work together with the governments, ILAE [International League Against Epilepsy], IBE [International Bureau for Epilepsy] and other partners in the implementation of the Strategy and present progress reports to the Directing Council periodically.
How can the PAHO initiative be translated into action for people with epilepsy? The answer is implementing the Strategy and Plan of Action; that means working with the ministries of health placing the topic in the health agenda at country level, as well as developing national plans on epilepsy. An initial action was to prepare a regional report on programs, services, and resources in the health sector to address the needs of people with epilepsy. The report created a baseline for the follow-up and evaluation of this matter. Currently, our technical cooperation with many countries is focused mainly in three points: ● Develop a national plan or program on epilepsy. Only one third of the countries have a national plan/program on epilepsy. ● Strengthen the capacity of the personnel in the primary health care (PHC) to deal with people with epilepsy. ● Ensure the availability of antiepileptic drugs at the PHC. In this process of implementation we are working very close with ILAE and IBE; in fact, many efforts are made in a collaborative way.
How will the PAHO plan interface with ILAE, IBE, WHO [World Health Organization], etc.? ILAE, IBE, and PAHO are partners in this initiative. ILAE and IBE participated with PAHO in the process of Epilepsia, 55(12):1907–1909, 2014 doi: 10.1111/epi.12582
preparation, discussion, consultation, and adoption of the Strategy. Carlos Acevedo (IBE) and Marco T. Medina (ILAE) played an essential role in this work. I would like to take advantage of this opportunity to recognize the fabulous support provided for [by] these colleagues and friends. We are moving ahead in coordination with ILAE and IBE; in August 2013, we held a regional meeting in Santiago de Chile sponsored by the Ministry of Health of Chile and the Chilean League Against Epilepsy; it was also a collaborative effort among PAHO, ILAE, and IBE. The objective of this meeting was to present and discuss the most innovative and successful experiences on epilepsy in the region.
What opportunities does your organization have in working with professionals in epilepsy care? (Grant opportunities, working through social media, registries of rare diseases, etc.) There are many windows of opportunity for a strong collaboration with professional organizations at different levels. For instance, supporting trainings, contributing to improve health services, and participating or sponsoring research. The preparation and submission of proposal for grants is also a way to strengthen the cooperation. Another important partnership should be with users and families organizations including them in the process of planning and implementation of actions related to epilepsy.
Any other ideas or items we should include for our Epilepsy readers? Finally, to emphasize that I am very happy and satisfied with this partnership PAHO-IBE-ILAE; for PAHO has been a tremendous experience in terms of coordination between organizations and in the perspective of the technical cooperation with the countries. This work is an example for others and open[s] new windows of opportunity. In formal terms, PAHO signed a Memorandum of Understanding with ILAE and IBE, which created a legal and operative framework for the three organizations. But beyond that we have developed a solid friendship and a cordial environment that facilitate our common work. However, I need to say that there are still many barriers and difficulties, a lot of work to do, and a long way to walk, but we are in the right route. Together we can do it.
1909 Interview with: Jorge J. Rodriguez
Given the challenges for implementing the PAHO strategic plan for the Americas, what can the readers of Epilepsia do to help?
Disclosure The author declares no conflicts of interest. I confirm that I have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.
Disclaimer I think the implementation of the Strategy is a tremendous challenge but all together can contribute to the objectives. Each organization and person, from its position, should address specific goals. As example, advocacy, social pressure on parliaments to update the legislation, mobilization of resources, negotiating with the authorities of government to decentralize and increase the neurological services. The professionals individually and as associations might participate and support the process of training and improving the services. I mean everybody has a piece of cake in this process, an area to dedicate efforts and time.
Editor’s Note: Epilepsia’s Epilepsy Stories is a venue for nonprofit organizations to educate our professional readership about their mission for people with epilepsy from around the world. Many organizations raise awareness about epilepsy including ILAE’s sister organization, the IBE and its chapters. Epilepsia does not endorse one organization over another. If you would like your nonprofit organization recognized, contact us at [email protected].
If our readers want more information on you and your organization what is the contact information? Contact: Jorge J. Rodriguez, M.D., Ph.D. Unit Chief, Mental Health and Substance Use Pan American Health Organization (PAHO/WHO) 525 23rd. St, NW, Washington, DC 20037, U.S.A. E-mail:[email protected]
Epilepsia, 55(12):1907–1909, 2014 doi: 10.1111/epi.12582
This document is a scanned copy of a printed document. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material.
