Factor-H ofrece un servicio de asistencia legal gratuita en Colombia, con el único objetivo de facilitar el acceso a los servicios, medicamentos e insumos que el Estado colombiano asegura a todos los pacientes afectados por la enfermedad de Huntington. Factor-H tiene como objetivo ayudar a todas las familias con EH a navegar el complejo panorama de acceso a beneficios médicos y a medicamentos, que a menudo pueden ser difíciles de obtener a través de las compañías de seguros.
En 2022, Factor-H contrató a Brayan Hernández para administrar este programa y representar las necesidades de los pacientes y sus familias. Brayan ha tenido mucho éxito en garantizar que los pacientes obtengan los medicamentos que necesitan, así como en garantizar que los pacientes en etapa avanzada reciban la atención adecuada, siempre que sea posible.
El programa de Asistencia Legal para familias afectadas por la enfermedad de Huntington es parte de la asistencia integral que ofrece Factor-H desde su pilar estratégico de Incidencia. La asistencia tiene como objetivo atender las inquietudes y problemas que presenta la población de interés al momento de acceder a los servicios institucionales para garantizar sus derechos.
Recientemente, en septiembre de 2024, Factor-H entabló una alianza estratégica con ISILegal, una ONG startup colombiana dedicada a crear caminos hacia la equidad en salud. Ellos, al igual que Factor-H, están comprometidos con la defensa, el acceso a la salud y la justicia como una obra social para los pacientes con enfermedades raras.
Nuestra colaboración busca llegar a más familias en Colombia que experimentan barreras y desafíos al momento de interactuar con el sistema de salud, por ello, ISILegal viene a apoyarnos en la presentación de “acciones de tutela” cuando sea pertinente y necesario para obtener servicios y tratamientos que permitan a nuestras familias vivir en mejores condiciones.
Todas las familias pueden acceder a este servicio de manera totalmente gratuita a través de nosotros, pueden contactarnos a asesoriajuridica@factor-h.org y brayan@factor-h.org o a través de nuestros agentes sociales en Colombia.
Por favor, comprendan sus derechos y trabajemos juntos para que todas las personas afectadas tengan acceso a un nivel adecuado de atención y el apoyo que les garantiza la ley en Colombia.
¿Cómo funciona el programa?
Nuestro programa jurídico está dirigido a familias afectadas por la enfermedad de Huntington, pacientes, familiares en riesgo, cuidadores y miembros del núcleo familiar.
Nuestro abogado Brayan Hernández está disponible para asesorar a todas las familias colombianas que tengan dudas o preguntas sobre sus derechos y garantizar que el sistema de salud colombiano brinde a los enfermos y cuidadores la asistencia que por ley les corresponde.
La asistencia jurídica que ofrece el programa es meramente orientativa. Factor-H y el personal encargado de brindar la asistencia no tienen responsabilidad en relación con el resultado de los procesos y acciones que se inicien.
Objetivos específicos
1. Brindar asistencia jurídica gratuita a las familias afectadas por la enfermedad de Huntington, pacientes, familiares en riesgo, cuidadores y miembros del hogar, en un marco de respeto, dignidad e igualdad.
2. Incidir en el marco institucional para reducir las brechas administrativas que limitan el acceso a los derechos de la población de interés.
Como parte de este programa, Brayan Hernández mantiene reuniones periódicas virtuales y presenciales con familias afectadas por la EH, para educarlas sobre sus derechos y brindarles un marco para reclamar lo que les corresponde por ley en Colombia. También ha representado a Factor-H en reuniones internacionales de la comunidad de enfermedades raras, que se han llevado a cabo en Colombia, trabajando en estrecha colaboración con la organización sin fines de lucro Federación de Enfermedades Raras de Colombia (Fecoer).
Algunas cifras del 2023
En el 2023, Factor-H postuló 4 acciones para proteger los derechos de las personas con EH, 1 solicitud de inmigración de una familia venezolana con EH que había llegado a Barranquilla, 5 instancias de derecho de petición, para asegurar el acceso a medicamentos y cubrir los costos de transporte a centros médicos, 8 denuncias legales luego de que las compañías de seguros dejaron de proporcionar medicamentos a los pacientes y 1 incidente de desacato, un recurso final ante el juez, para lograr el cumplimiento de la decisión judicial.
Vean a continuación una presentación virtual reciente sobre el programa de asistencia jurídica en salud. También puede acceder a una descripción de las diapositivas que se muestran a continuación en formato PDF.
The LA PEP program’s main objective is to provide educational opportunities to health professionals that work in Latin American enclaves with a high incidence of Huntington’s disease.
Health & Disease Management is one of the main areas of focus of Factor-H and one of the main programs is what we call LA PEP (The Latin American Profesional Exchange Program), whose main objective is to provide educational opportunities to health professionals in Latin American enclaves with a hight incidence of Huntington’s disease. Factor-H selects and recommends health professionals to apply for fellowships, either funded by Factor-H itself, or through HD organizations such as the European HD Network (EHDN). All applicants must be selected by factor-H to be considered for funding.
The Program has two main dimensions. In one of them, we send Latin American professionals to be trained to HD centers of excellence in Barcelona (Spain), Medellin (Colombia) and Santiago (Chile), in the other one, we send a multidisciplinary team from HD centers of excellence, to HD clusters where they conduct field medical visits and training courses for impoverished communities.
The first strategic goal is to send health professionals from these regions to centers of excellence in Spain or Latin America to get trained, in brief stays of 1-3 months in duration. Defining a collaborative agreement between HD-expert clinical units in Barcelona (Spain), Santiago (Chile) and in Medellin (Colombia) and local Latin-American professionals (such as the hospital and University of Zulia State, Venezuela) with proximity to the communities most affected by HD will undoubtedly have a significant positive impact on these communities. In this dossier, you will find letters of support from the various host institutions.
The trained professionals will then return to their communities or host institutions to provide access to adequate care and to improve the education of their peers and also the families impacted by the disease.
– Sending Latin American professionals to be trained to HD centers of excellence in Barcelona (Spain), Medellin (Colombia) and Santiago (Chile). Sending a multidisciplinary team from HD centers of excellence to HD clusters, to conduct field medical visits and training courses for impoverished communities.
A second aspect of the program involves sending a professional HD team from our allied European and Latin American colleagues working in HD centers of excellence to those communities to conduct training courses for health professionals and caregivers. We believe this second ‘arm’ of the program will ensure a wider reach to many caregivers and local health professionals. This will also ensure a broader cooperation between HD-specialists and residents, students and non-physicians. Through lectures and workshops, we think this approach will attract a wider support by the local institutions and ensure continuity. In addition, the ability for the visiting teams to conduct visits to the most impoverished communities will lead to better tailoring of best practices given the constraints experienced in conditions of extreme poverty. Given the fact that hundreds of affected individuals are located in small geographic areas, a tailored program well-crafted for their specific needs should have an enormous impact on the population at hand.
The LAPEP program is aimed at personnel involved in the medical (fellows, neurologists, psychiatrists, nurses), psychological (clinical psychologists and neuropsychologists) and other health-related activities (speech therapists, physical therapists, occupational therapists) who participate in the care and management of HD families.
The exchange program will allow selected applicants to conduct an internship rotation at one of the collaborating sites for either a 1-month or a 3-month period.
Moreover, we are also fully disposed to define an interventional program in Latin-America which will have a yearly periodicity (two to four weeks per year) and will involve professionals from the HD centers of excellence who in coordination with Factor-H will perform assistance and formative activities in universities and rural areas where a large number of HD communities.
One of the main aims of this interventional program will be to provide the communities with didactic and visual material (to be prepared) about care and management of HD-related and health-related complications such as swallowing difficulties, ulceration, infections, behavioral disturbances and suicidal ideation, among others.
This program has two main audiences – the local health professionals working at rural health centers, and the caregivers or family members who care at home for affected relatives.
The beginning of Factor-H took place in Mendoza, Argentina, in 2012, and we celebrated the beginning of our journey together as a team through music and dance. A tango troupe volunteered to take us into a magical and complex journey – one that we continue to take together through our humanity. Art has always been an intrinsic part of our mission.
Art can inspire social change and therefore, we want to incorporate art as a key medium for improving the quality of life of the communities we work in.
ART 4 HD is therefore a key aspect of our work – ART for the betterment of society, for social inclusion, and to bring into the open those who until now have been invisible. ART 4 HD seeks to raise awareness and promote social change. Whether dance, photography or street art – we seek to work with local artists to bring HD out into the open and to bring international attention to the small villages where our friends live.
We are lucky to have the help of several incredible artists whose dedication to social change brought us in close contact.
We collaborate with Venezuelan photographer Vladimir Marcano, whose book EL MAL describes the conditions of HD patients in Barranquitas, Venezuela. Vladimir’s photographs capture the conditions in this town very well – the raw beauty of the Lake, the ever present disease and poverty, the hope of the new generation, the abandonment of the late stage patients. You can buy the book in Amazon.
Vladimir is now working with Factor-H to document the at-risk children sponsored under our Kids project. The pictures below show some of his latest photographs documenting the lives of these children, whose lives we are trying to change.
We also work with street artist from Colombia, DJ Lu, Juegasiempre who started the recent program Street Art for HD.
The Street Art for HD program aims to increase visibility of HD-affected communities in Latin America through street art projects. It also aims to honor the lives and struggles of HD families living in poverty and neglected by society.
The program started in Colombia in 2019 and captured 3 main themes that surround HD – the person affected with HD, the caregivers, and the children, whose lives are affected by the disease of a parent, and by the fact that they too might inherit the disease. The project captured all of these three dimensions in several towns in the Caribbean Colombian Coast where a lot of the patients we work with live.
We are now in the process of expanding efforts to other countries and communities, including Venezuela, Chile and Peru, in addition to Italy and Scotland. Next on our plans is Maracaibo, Venezuela, in March 2020, where DJ LU will travel there with Factor-H to paint murals alongside Venezuelan artists.
The project is managed by Selene Capodarca from Factor-H and DJLu, our muralist and resident artist from Bogotá, Colombia. You can follow DJLu’s Juegsiempre in Instagram
Program “Abrazos” is an ongoing program in Colombia since 2015 (40 children as of 2020), and also in Venezuela since 2019 (120 children as of 2020). This program covers basic assistance – food, clothes, school supplies, dental and medical access. Additionally, program covers recreational and educational events every 6 months (Christmas and summer holidays events and trips)
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