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.
Factor-H offers a free-of-charge legal assistance service in Colombia, with the sole objective of facilitating access to the services, medicines and supplies that the Colombian State ensures to all patients affected by Huntington’s disease. Factor-H aims to assist all HD families with navigating the complex landscape of accessing medical benefits & medications, which often can be difficult to obtain from insurance companies.
In 2022, Factor-H hired Brayan Hernández to manage this program and to represent the needs of the patients and their families. Brayan has been very successful in ensuring that patients get the medications they need, as well as ensuring that late-stage patients get adequate care, whenever possible.
The Legal Assistance program for families affected by Huntington’s disease is part of the comprehensive assistance offered by Factor-H from its strategic Advocacy (“Incidencia”) pillar. The assistance aims to address the concerns and problems presented by the population of interest at the time of accessing institutional services to guarantee their rights.
Recently, in September 2024, Factor-H entered into a strategic alliance with ISILegal, a Colombian startup dedicated to creating paths to health equity. They, like Factor-H, are committed to the defense, access to health and justice as a social work for patients with rare diseases.
Our collaboration seeks to reach more families in Colombia who experience barriers and challenges when interacting with the health system, therefore, ISILegal comes to support us in the presentation of “tutela actions” when it is pertinent and necessary to obtain services and treatments that allow our families to live in better conditions.
All families can access this service completely free of charge through us, they can contact us at asesoriajuridica@factor-h.org and brayan@factor-h.org or through our social agents in Colombia.
Please understand your rights and we will work together so that all affected people have access to an adequate level of care and the support they are guaranteed by law in Colombia.
Our legal program is aimed at families affected by Huntington’s disease, patients, at-risk family members, carers and members of the nuclear family.
Our attorney Brayan Hernández is available to advise all Colombian families who have doubts or questions about their rights and ensure that the Colombian health system provides the sick and caregivers with the assistance that they are entitled to by law.
The legal assistance offered by the program is merely indicative. Factor-H and the personnel in charge of providing the assistance have no responsibility in relation to the outcome of the processes and actions that may be initiated.
Specific objectives
1. Provide free legal assistance to families affected by Huntington’s disease, patients, at-risk family members, caregivers, and household members, within a framework of respect, dignity and equality.
2. Influence the institutional framework to reduce administrative gaps that limit access to rights of the population of interest.
As part of this program, Brayan Hernández holds regular virtual and in-person meetings with HD affected families, to educate them about their rights and to provide them with a framework to claim what belongs to them by law in Colombia. He has also represented Factor-H at international meetings of the rare disease community, which have taken place in Colombia, working closely with the nonprofit organization Federation of Rare Diseases of Colombia (Fecoer).
Some numbers from 2023
In 2023, Factor-H postulated 4 actions to protect the rights of individuals with HD, 1 application for immigration from a Venezuelan HD family who had arrived in Barranquilla, 5 instances of right of petition, to ensure access to medication and to cover the costs of transport to medical centers, 8 legal complaints after insurance companies stopped providing medications to patients, and 1 incident of contempt, a final resource to the judge, to achieve compliance with the judicial decision.
Watch a recent virtual presentation on the health legal aid program below (in Spanish). You can access a description of the slides shown below as a PDF as well (also in Spanish).
PDF describing the principles of the Legal Assistance program in Colombia
The Health Day, conducted on September 26, 2023, was aimed at children and adolescents belonging to the EH community in Algarrobo in the department of Magdalena, as a collaboration between Factor-H, the University Metropolitana (Barranquilla), University Area Andina (Valledupar), Colegio el Carmen and GREMCAN S.A. (a Colombian occupational heath NGO). The Universidad Metropolitana volunteer department has become our main collaborator in the Caribbean Coast and their services enables a compeehensive health strategy for HD patients and children. The Area Andina University provides legal assistance to guarantee that the insurance companies comply with Colombian law and that affected individuals get the medications they need.
The Algarrobo HD community is largely unknown to the medical community. Approximately 16 families with HD live there, and currently, 23 affected adults and 3 JHD cases are included in our database. This community lives in conditions of extreme duress and Factor-H has become focused on providing healthcare and legal assistance to these families to ensure better access to healthcare.
The objective of the present campaign was to offer the population of boys and girls at risk for HD in the municipality of Algarrobo complementary health and educational services, as well as provide legal aid services. We also welcomed children with disabilities living in the municipality.
The following services were provided to 122 individuals:
Table 1. Education in specific protection and early detection program Pyd, Voluntariado UniMetro and occupational health Gremca S.A.
Educational activities | # participants at-risk for HD | # Adults with HD | # kids with disabilities |
Oral health | 106 | 6 | 4 |
Growth & development | 106 | 0 | 4 |
Eye exams | 106 | 6 | 4 |
Table 2. Number of beneficiaries of the primary and complementary services for patients and youth at-risk for HD.
Primary care Population | Nutrition | General Medicine | Optometry | Odontology |
Kids at-risk for HD | 103 | 103 | 47 | 88 |
Kids with HD | 3 | 3 | 3 | 3 |
Adults with HD | 6 | 6 | 6 | 6 |
Caregivers | 6 | 6 | 6 | 6 |
Complementary Services | Pediatric Medicine | Internal Medicine | Phono-audiology | Physioteraphy |
Kids at-risk for HD | 93 | 0 | 0 | 0 |
Kids with HD | 3 | 0 | 3 | 3 |
Adults with HD | 0 | 14 | 6 | 6 |
Dilia was born in San Martin of Loba, a municipality located north of the department of Cesar, Colombia. Her parents were Florentino and Ernestina. She met her husband, Valentin, who was also her cousin, at a dance when she was young, and they felt immediately in love. They had twelve children, although one of them died at childbirth. Her kids’ names are Ana, Fanny, Alba, Everlides, Maribel, Edilson, Denis, Yennys, Delbis, Rafael and Ilber.
I first met Dilia in 2013, during my first trip to Colombia, and hers was one of the first large Latin American HD families I ever visited. She lived with her affected kids and several grandkids, in a family compound in the outskirts in “El Difícil”, in Northern Colombia (Magdalena State). As each kid got progressively sick, they all moved in with her. Most of the women were abandoned by their husbands, and they relocated to be under Dilia’s care. She cared for them until the end of their lives.
Meeting Dilia has been one of the greatest honors in my life. One meets very few people in life like Dilia. She was blessed with extreme elegance and poise, one that could be noticed the moment one met her. Elegance in her eyes, in her smile, in the way she stood.
She radiated determination, and a commitment to family that is so seldom found these days.
Her life was dedicated to care for her family, and even during the most pressing times, she maintained a strong sense of dignity and a deep faith in God, a faith that carried her through very dark times, as her husband and 8 of her kids got sick with Huntington’s and died. Never complaining, she treasured her early life, when her kids were healthy and happy. She would often speak of how lucky she had been in life, to be able to care for and to love her family.
When we sent her the invitation to come to the Vatican to meet Pope Francis, Dilia cried of the emotion, but hesitated to accept the invitation. She did not want to leave her kids alone. I remember having to call her and speak to her about how we would ensure her kids would be safe while she would be away. She finally agreed to come when she felt confident that her kids would be well cared for.
In Rome, Dilia’s story became the story that best symbolizes the terrible nature of this disease, which robs so many people of their lives and affects entire families. She became a sensation during the trip, and everyone wanted to be next to her, to know her, to learn from her about accepting the way life happens, and to do it with pride, with resilience. She was the personification of maternal love.
On Friday evening, Dilia passed away in Santa Marta. She had a fall a few months ago which led to brain hemorrhage. After spending a few weeks in the ICU, she went home with her daughter Everlides. She died peacefully. Factor-H has provided a nurse to care for her two sick daughters.
While her absence will be hard to bear every time I go to Colombia, her life story will continue to be an inspiration for me to persevere, to value life’s good moments, and to continue working for all the new generation of children who will be affected by HD and who might lack someone like Dilia in their lives.
We will continue to care for her kids and grandkids, and her legacy of love and commitment to making life easier for those afflicted with HD will carry on in our hearts and in our lives.
I asked two extraordinary women who also symbolize our quest to make life easier for families affected by HD, Claudia Perandones and Elena Cattaneo, to write something in remembrance of Dilia, which you can read below.
On May 26, 2023, Dilia died at the age of 86 in the city of Santa Marta.
Even now, seeing this on paper, it is hard to believe this is real, because you, Dilia, made us believe that you were invincible.
You fought so many battles in your life that we cannot imagine the dawn without the sun caressing your beautiful face, furrowed with wrinkles in which you surely hid so many tears for the loss of your children.
You overcame the tremendous pain that this incurable disease caused in your family, you faced the difficulties of a complex society that often ignored the needs of your loved ones, and even in that universe, you knew how to be happy and give infinite love.
We can still see you crossing the streets of the Vatican with tremendous beauty and elegance, happy to be surrounded by people to love and help.
Dilia, you are an example, we are saddened because we still had a lot to learn from you.
We know that even with your wings broken by so much pain, you are taking care of your children forever.
Claudia Perandones, Buenos Aires, Argentina.
That May 18, 2017, Dilia was with her daughter Maribel, in the front row, in Rome, to receive the Pope’s blessing and his embrace, together with hundreds of other patients and their families from all over the world.
Dilia confided in us that she thought the disease existed only in her family.
I met Dilia in those days, we walked, danced and ate together. She told us that for years she was happy with her many children, then the disease arrived. In another life Dilia might have been a queen, proud, hardworking, patient, just grateful and caring for others. She was the mother of 11 children, many with the disease. She was the voice that shook journalists in Rome. Some Italians then approached her in a gesture of solidarity.
Our thoughts, our embrace and our gratitude go to her for a life spent valuing its dignity. We all have the task of continuing her legacy.
Elena Cattaneo, Milan, Italy
“Dilia, for some time, had noticed outbreaks of tiredness in her husband; she observed how the fingers of his right hand moved uncontrollably, which he wanted to hide from her, although his head seemed to do the same thing. Her beloved husband got worse; she helped him in what he couldn’t do. He died at the age of forty, broken by this ailment”
Dilia now knew why God had given her so much strength in her soul, and she learned what true compassion is; their children inherited love, honesty, the gift of service. Unfortunately, six of them have already died from the same disease and two more are affected.
One of Dilia’s most cherished memories was the trip she made to Rome.
Factor-H is one of the means that has been put in her way to achieve her purpose, the blessing of Pope Francis now accompanies her always, every day she finds another reason to express her love for one’s neighbor, she understood from that moment what her real mission was. She has wanted to share her story with the sole purpose of exhorting all those who, like her, who find themselves in this situation, and want to keep alive their dreams.
“Faith is born in the hearts of men, and it is what makes them truly brave”
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