Retos y desafíos globales de la salud en personas con albinismo: Perspectiva de la República Dominicana
El albinismo es una condición genética caracterizada por la falta de melanina, lo que afecta la piel, el cabello y los ojos. Esta deficiencia no solo trae complicaciones médicas serias como una elevada sensibilidad al sol y problemas visuales, sino que también genera graves problemas sociales como el estigma y la discriminación. La forma en que se ve el albinismo varía mucho entre diferentes regiones, como en algunas áreas de África en comparación con Europa y América del Norte, lo que resalta la urgencia de abordar estas cuestiones desde un enfoque de cuidado integral. Las personas con albinismo enfrentan numerosos desafíos. El riesgo de cáncer de piel es alto debido a la falta de melanina que protege de los rayos solares, y los problemas visuales asociados con el albinismo pueden ser limitantes. Además de los retos físicos, el impacto social puede ser destructivo. En algunos contextos culturales, los mitos y malentendidos sobre el albinismo pueden provocar persecución y violencia, lo que indica que la atención médica debe considerar también el contexto social. Foto: Encuentro Anual Fundación Albinismo Solidario Asociado 2024. Es vital que la diplomacia en salud global priorice la educación y la mejora de la percepción pública como estrategias fundamentales para luchar contra la desinformación y los prejuicios asociados al albinismo. Informar adecuadamente sobre las causas genéticas y médicas de esta condición puede ayudar a eliminar estereotipos dañinos y promover un mayor reconocimiento social. Además, es importante que las políticas internacionales fomenten la creación y aplicación de medidas de protección para las personas con albinismo. Estas medidas deberían asegurar acceso a servicios médicos especializados, como la dermatología y la oftalmología, y extender las protecciones legales para garantizar la seguridad y los derechos humanos de estas personas, especialmente en las áreas donde son más vulnerables. La colaboración internacional es esencial para compartir recursos, estrategias y prácticas óptimas, y para apoyar la implementación de programas que se adapten cultural y demográficamente a las necesidades de las comunidades afectadas. Incluir las experiencias y perspectivas de las personas con albinismo en la formulación de estas políticas es fundamental para asegurar intervenciones efectivas y humanas. Con un compromiso y desarrollo continuo de estrategias de atención médica integradas, podemos avanzar hacia un futuro más justo y saludable para las personas con albinismo, eliminando barreras físicas y sociales. Un ejemplo sobresaliente de apoyo al albinismo en América Latina es la inauguración de la Primera Clínica de Albinismo en la República Dominicana, resultado de la colaboración entre la Fundación Albinismo Solidario y el Instituto ChromoMED. Inaugurada el 17 de julio de 2024, esta clínica es pionera en ofrecer un cuidado médico especializado y comprensivo en la región, dirigida por un equipo de especialistas que incluye al Dr. Carlos Gómez, la Dra. Katlin De La Rosa Poueriet, y a mí, Dr. Bary G. Bigay. Con instalaciones modernas, la clínica no solo ofrece servicios médicos de alta calidad, sino que también se dedica a mejorar la inclusión social y la concienciación sobre el albinismo, indicando un avance relevante en la creación de un entorno de aceptación y apoyo continuo. “A medida que se intensifican los esfuerzos globales por mejorar la salud de las personas con albinismo, es imprescindible reforzar la investigación en este campo. La inversión en estudios sobre terapias innovadoras, el desarrollo de tratamientos preventivos para el cáncer de piel en esta población y la creación de protocolos de atención médica adaptados son pasos esenciales hacia un futuro más equitativo y saludable. El compromiso con la educación, la investigación y la concienciación social seguirá siendo clave para garantizar que las personas con albinismo puedan vivir con dignidad y sin barreras, contribuyendo así a un mundo más inclusivo y justo.” Los esfuerzos globales por mejorar la salud de las personas con albinismo han ganado impulso en los últimos años, pero aún queda mucho por hacer. Esta población enfrenta desafíos significativos debido a la falta de acceso a cuidados médicos adecuados, especialmente en lo que respecta a la prevención y tratamiento del cáncer de piel. El albinismo, que se caracteriza por una deficiencia en la producción de melanina, expone a las personas a un mayor riesgo de desarrollar cáncer de piel debido a la mayor vulnerabilidad de su piel a la radiación ultravioleta. Por lo tanto, es fundamental invertir en investigación para encontrar terapias innovadoras que puedan reducir este riesgo y mejorar la calidad de vida de las personas con albinismo. Además, el desarrollo de tratamientos preventivos, como cremas solares de mayor efectividad y protocolos de atención médica adaptados a las necesidades específicas de esta población, será fundamental para proteger la salud de los afectados. El enfoque en la educación y la concienciación social también es clave. Sensibilizar a la sociedad sobre las realidades del albinismo, los problemas de salud que conlleva y la necesidad de inclusión social puede ayudar a reducir los estigmas y la discriminación que a menudo enfrentan las personas con esta condición. Asimismo, fomentar la capacitación de profesionales de la salud para reconocer y tratar adecuadamente las afecciones relacionadas con el albinismo es esencial. En última instancia, estos esfuerzos colaborativos en investigación, educación y desarrollo de políticas públicas son pasos esenciales hacia un futuro en el que las personas con albinismo puedan vivir con dignidad, sin barreras y tener acceso a una atención médica adecuada, contribuyendo así a un mundo más inclusivo y justo. Sobre el autor Dr. Bary G. Bigay Mercedes Director Médico Ejecutivo del Instituto ChromoMED Nacido en San Pedro de Macorís, República Dominicana, es un respetado Médico Genetista Clínico & Molecular, y Director Médico Ejecutivo del Instituto ChromoMED en Santo Domingo, Pionero en Investigación en Medicina Traslacional y Genómica del Albinismo en República Dominicana. Doctor en Medicina por la Universidad Central del Este y con especializaciones en genética y genómica en prestigiosas universidades de España y Francia como la Universidad de Valencia y la Universidad de Montpellier, posee múltiples estudios de Máster en Biología Molecular, Medicina Reproductiva y Oncología de Precisión Genómica. Es autor de importantes publicaciones científicas y ha sido reconocido
The Human Variome Project: Global Coordination in Data Sharing
This article outlines a global effort initiated in 2006 to standardize and share genetic data for clinical and research purposes, supported by international bodies such as UNESCO. It details the establishment of national hubs to ethically collect, curate, and disseminate genomic information, addressing infrastructure gaps and fostering regional collaboration through diplomacy. The initiative aims to advance healthcare equity and improve diagnostics through coordinated, cross-border cooperation by prioritizing capacity-building in underserved regions and harmonizing data practices. Download
Science as Diplomacy: The Strategic Power of One Health in Global Policy
The One Health approach, which recognizes the interdependence of human, animal, and environmental health, is not only a matter of scientific collaboration but also a prime example of Science Diplomacy in action. Science Diplomacy goes beyond cooperation to engage science as a strategic diplomatic tool, capable of influencing global policies, easing geopolitical tensions, and fostering trust between nations with differing agendas. Through this lens, the One Health approach becomes a means of addressing complex and often contentious global challenges by leveraging scientific expertise in diplomatic negotiations, international treaties, and conflict resolution. The diplomatic role of science becomes evident in how scientific knowledge informs global health policies, mediates disputes, and fosters international trust. For instance, pandemic preparedness is not just about sharing research and data but also about aligning different national interests in a way that can prevent diplomatic rifts during crises. During the COVID-19 pandemic, for example, the distribution of vaccines, access to essential medicines, and the regulation of travel and trade became highly politicized. Scientific expertise, combined with diplomatic negotiation, helped to form frameworks like COVAX that sought to balance national interests with global health equity. This balance required science to be used as a diplomatic instrument, guiding international discussions toward a common understanding of the evidence and creating mutual agreements amidst political tension. Similarly, global efforts to combat antimicrobial resistance (AMR) highlight the diplomatic weight science carries in policy discussions. AMR is driven by practices in agriculture, healthcare, and environmental management that are influenced by economic interests, political priorities, and social norms in different countries. Here, science provides the common ground upon which diplomatic negotiations occur. Initiatives like the Global Action Plan on Antimicrobial Resistance, developed by WHO, FAO, and WOAH, were not just scientific collaborations but diplomatic triumphs—binding nations to a shared set of guidelines that balanced national sovereignty with the need for collective action. In this case, scientific evidence served as the backbone for treaty-making, where diplomatic negotiations turned scientific consensus into political commitments. The One Health approach to climate change and environmental degradation similarly exemplifies Science Diplomacy. Environmental health directly impacts national economies, food security, and public health, making it a politically charged issue. Here, science plays a diplomatic role by creating a neutral ground for dialogue between countries that may be at odds on other fronts. The Intergovernmental Panel on Climate Change (IPCC), for example, has been instrumental in shaping the Paris Agreement. Through scientific assessments of climate change’s impact on ecosystems, agriculture, and human health, the IPCC’s work serves as a diplomatic bridge, ensuring that all parties—despite conflicting political or economic interests—base their negotiations on shared scientific understanding. Science thus becomes a tool not just for cooperation but for diplomatic consensus-building, helping to mediate conflicts over resource management, carbon emissions, and environmental responsibility. In the context of wildlife conservation and zoonotic disease surveillance, Science Diplomacy plays a role in preemptive conflict resolution. Zoonotic diseases, such as Ebola and avian influenza, often emerge from regions with significant biodiversity and sometimes weak governance structures. The risk of diseases spilling over into human populations can become a source of diplomatic tension between neighboring nations or trading partners. Science can act as a diplomatic intermediary by offering objective, evidence-based assessments of the risks and by establishing internationally recognized protocols for disease surveillance. This allows nations to resolve potential conflicts diplomatically before they escalate, with organizations such as the Global Health Security Agenda (GHSA) providing platforms for scientific-diplomatic engagement. Rather than being a purely cooperative effort, this is a strategic use of science to negotiate boundaries, responsibilities, and shared risk. Food safety and food security provide further examples of the diplomatic role of science. Disputes over food standards, trade, and agricultural practices can create tension between nations, particularly when health and safety regulations differ. Science Diplomacy here is used to harmonize these standards while respecting national sovereignty, thus preventing potential trade wars or diplomatic standoffs. For example, the Codex Alimentarius Commission, a joint effort by WHO and FAO, plays a diplomatic role in mediating disagreements over food safety, using scientific evidence to broker consensus on what constitutes safe food practices. In this capacity, science is not just enabling cooperation but is driving diplomatic negotiation, ensuring that trade disputes do not escalate into larger geopolitical conflicts by grounding them in neutral, scientifically verifiable standards. In the broader context of environmental issues like biodiversity loss and pollution, science is used to establish common metrics for environmental impact assessments, which then feed into diplomatic negotiations for treaties like the Convention on Biological Diversity or the Montreal Protocol on substances that deplete the ozone layer. Science acts as a form of diplomatic currency in these discussions, allowing countries with divergent interests to engage in constructive dialogue based on mutually understood scientific principles. Diplomatic negotiations often hinge on the interpretation of scientific data, with science providing the means to translate complex environmental challenges into actionable policies, thus preventing potential conflicts over resource use and environmental degradation. In conclusion, the One Health approach is not just about scientific collaboration; it is a key arena for Science Diplomacy, where science plays a diplomatic role in shaping international policies, mediating disputes, and fostering global trust. By applying scientific principles in diplomatic contexts, nations can navigate the challenges of human, animal, and environmental health with greater clarity and consensus, ultimately leading to more effective and equitable global governance. In this sense, the diplomatic role of science in One Health goes beyond cooperation—it is about using scientific knowledge as a strategic tool to resolve conflicts, negotiate treaties, and build long-term, sustainable relationships between nations. About the author Casimiro Vizzini Science Diplomacy Consultant Health Diplomacy Alliance A Medical Doctor specializing in Urology, with advanced studies in International Cooperation, he has over 18 years of experience bridging science, health, and diplomacy. His career spans roles at UNESCO, where he led science policy and capacity-building projects, collaborated with the AAAS on science diplomacy, and secured European Commission funding for global partnerships. As Secretary General of EUGLOH, he advanced academic
Knowledge and perceptions of graduating BS pharmacy students in Metro Manila to counsel on the use of medical devices for diabetes management: A cross-sectional study
This paper evaluated these students’ readiness to guide diabetes management devices. The results indicated that, despite students’ confidence in their counseling skills, their actual knowledge about these devices was insufficient. Notably, an increase in course hours correlated with enhanced perceived counseling abilities, suggesting a need to reassess the BS Pharmacy curriculum in the Philippines. Download
India’s Vaccine Diplomacy to Southeast Asia in the Context of “Act East Policy”
This chapter of the book, India and Southeast Asia in a Changing World, examines how India’s Act East Policy (AEP), initially implemented from 2014–2019 to strengthen ties with Southeast Asia, adapted in response to the COVID-19 pandemic through the emergence of vaccine diplomacy. With Southeast Asian nations identified as key partners, the chapter explores how vaccine diplomacy became a strategic tool for advancing AEP objectives during the global health crisis. It provides a detailed review structured in three parts: first, analyzing the strategic importance of Southeast Asia within India’s vaccine diplomacy efforts; second, outlining the specific modalities through which India implemented this approach; and third, assessing the impact of these efforts on the broader implementation and future trajectory of AEP in the region. This comprehensive analysis sheds light on how health diplomacy reshaped regional engagement during a critical period. View
Transforming Global Health Partnerships
Transforming Global Health Partnerships: Critical Reflections and Visions of Equity at the Research-Practice Interface, edited by Anna Stewart Ibarra and A. Desiree LaBeaud. It is part of the Sustainable Development Goals Series. With contributions from over 90 authors across 26 countries, it examines the global health landscape through themes such as decolonization, ethics, gender, systems approach, transdisciplinary science, Planetary Health, One Health, and communication. Covering historical contexts, case studies, and future visions, the book emphasizes equitable and impactful partnerships among researchers, community leaders, and policymakers to address global health challenges. Download book
Skin Diseases as a Global Health Priority
Skin diseases represent a critical, often underestimated global health challenge, impacting over 25% of the population and causing approximately 120,000 deaths each year. Beyond physical symptoms, they significantly impair quality of life, productivity, and social inclusion, leading to serious mental health challenges. Disparities in healthcare access, especially in low-resource settings, further intensify these impacts, while environmental factors like climate change and pollution exacerbate conditions globally. Addressing skin diseases as a public health priority within the WHO’s Universal Health Coverage (UHC) framework is essential for equitable health outcomes. This integrated approach emphasizes the need for increased research, policy support, and sustainable funding. Through health diplomacy, international cooperation can mobilize civil society, healthcare providers, patient organizations, and governments to elevate skin health on the global agenda. An influential coalition supports prioritizing skin health, including: International Alliance of Dermatology Patient Organizations (GlobalSkin) International League of Dermatological Societies (ILDS) International Foundation for Dermatology (IFD) Health Diplomacy Alliance (HDA) Neglected Tropical Diseases Non-Governmental Organizations Network Skin Cross-Cutting Group (NNN Skin CCG) Anesvad Foundation World Alliance for Wound and Lymphedema Care (WAWLC) World Council of Enterostomal Therapists Pan Africa Association of Wound Care Experts Hôpitaux Universitaires Genève (HUG) We are committed to advancing policies and interventions that bridge healthcare gaps, reduce stigma, and ensure no UHC agenda is complete without addressing skin health for all. Read more about it: Background report – SkinDiseases
Go Blue Video Campaign – World AMR Awareness Week (WAAW)
https://youtu.be/yok3qfZPVL4?feature=shared As part of the World Antimicrobial Resistance (AMR) Awareness Week 2024 – 18-24 November, we would like to invite you to contribute to our video series campaign. Your participation will be invaluable in raising awareness under this year’s theme: “Educate. Advocate. Act Now.” This campaign unites key stakeholders—high-level officials, including policymakers, healthcare practitioners, academics, civil society, AMR survivors, the private sector, and others—from various sectors and regions. It will emphasize the urgent actions outlined in the High-Level Political Declaration on AMR. We kindly request your contribution by sharing a short video (maximum 3 minutes) in your native or working language – GO BLUE ! with something blue (clothes, background, etc). A quote, reflection, or key message on AMR and its significance in your field or region for any of the following: Please share your video to communications@hdalliance.org or upload it to this folder https://tinyurl.com/WAAWHealthDiplo
Health diplomacy in war and international conflict
In an era where international conflicts and wars are increasingly prevalent, Health Diplomacy has become critical to effectively address prevalent health challenges and the deterioration of health systems. This webinar will examine the distinct health needs of different conflict zones, the limitations and priorities of health diplomacy, and the relationship between health and humanitarian diplomacy. The discussion will also consider the role of Health Diplomacy in resource mobilization and the tools necessary to strengthen health systems in crisis settings, mitigate the impacts of conflict, and contribute to long-term peace-building. Date: Tuesday, 29 October 2024 Time: 14:00 – 15:30 CET Format: Webinar (via Teams) – In English Register here: https://tinyurl.com/HealthDiplomacyWar
AMR – Policy Brief
Download HDA Policy Brief AMR AMR – Sustaining Political Commitment to Safeguard Public Health: A Policy Roadmap This publication offers key recommendations for tackling antimicrobial resistance (AMR), including enhancing political commitment, implementing global targets, and ensuring equity in AMR efforts based on the United Nations N General Assembly High-Level Meeting on Antimicrobial Resistance 2024 Political Declaration. Discover our strategic roadmap and join us in addressing this vital public health issue. Click here
