05 December 2018
Programme title: Strengthening the care and education network for haemophilia in the state of Pará in Brazil
Partner: ASPAHC - Associação Paraense de Hemofilia
Represented by: Christianne Maria Oliveira Costa, President of ASPAHC
Start/end date: Q2 2016 - Q4 2018
In 2015, in the state of Pará access to haemophilia care was available only in the state capital of Belem. People with inherited bleeding disorders had to travel long distances, often by boat, taking many hours to reach care. In addition, people with haemophilia and their families living outside the capital city often lacked the adequate information to manage the condition.
For two and a half years the project team worked tirelessly to ensure first-level care is available outside the capital city. They have trained healthcare professionals throughout the state including the cities of Santarem and Marabá. People with haemophilia and their families received training to better manage their condition and are now part of a community.
Six years ago, Telma Pacheco de Oliveira and her family lived in Bagre, a small town in the Amazon basin North of Brazil. Out of her six children, Telma has three sons with haemophilia A.
From the remote town they lived in, the nearest haemophilia treatment centre was in the city of Belem – a distance of 300km. The journey to get the needed care for Telma and her sons was a costly 13-hour boat trip that was made once or twice per month.
“The low level of knowledge about haemophilia from healthcare professionals outside of the capital city made the situation very difficult,” recalls Telma. “I used to spend one month or 15 days in Belem, leaving the rest of the family in Bagre.”
It was an extreme hardship. But in 2012, it became far more than that.
Marrone, Telma’s fourth son, experienced a severe bleed requiring immediate care. In this case, the journey seemed never-ending. Marrone spent a full night of travel in devastating pain while his mother was unsure if her child would live to reach medical care.
Ultimately, Marrone reached Belem. He received the care he needed and was able to recover. But this event led Telma to make what she called “the hardest decision of her life.” She chose to split her family. She, Marrone, and two other children moved to Belem and left three other children in Bagre with the father. In Belem, Telma had no friends, no family, no job. But to her, she had no choice but to make this move.
In the state of Pará, many people with haemophilia live in remote locations and have no immediate access to care and expertise. The NNHF Brazil 4 project team, led by Christianne Oliveira Costa, witnessed many stories like Marrone’s – and they chose to embark on a journey that brought basic care closer to people with haemophilia living in the state of Pará.
Over the past two and a half years, the team has worked tirelessly to ensure that first-level care is available outside the capital. They have trained healthcare professionals throughout the entire state including the cities of Santarem and Marabá. Through interactive seminars and through the local patient organisation (ASPAHC), it was possible to significantly change the haemophilia care landscape.
“It took a lot of teamwork and a lot of travel, but we achieved real progress,” states Christianne Oliveira Costa. “This project is very important not only for the State of Pará but also as a model for other states. And it is rewarding to see the personal impact the project has had on people with haemophilia and their families.”
For many people like Marrone and his family, the situation is much improved.
It is a long journey towards progress in the region. But thanks to the work of the NNHF Brazil 4 team, the state of Pará is now serving as a model for states throughout the country.
Telma and Marrone had to travel 13 hours by boat from Bagre to Belem to access care. The project supported training for healthcare professionals in several cities including Santarém and Marabá to reduce travel time for people with bleeding disorders in the state of Pará.