21 October 2019
Decentralisation of comprehensive care to two centres in the East and establishment of a national reference centre for women with bleeding disorders in Havana
Instituto de Hematología e Immunologia (IHI), Havana
Dr Dunia Castillo
2 years, Q3 2016 - Q4 2018
The Cuba 1 project helped propel major steps forward for haemophilia care capability in Havana and areas on the west side of the island. However, on the east side of the island…
“My son had a bleed in his joints and he was unable to walk for a week. He was diagnosed at the age of 1, but we had to travel to Havana to confirm the diagnosis.”
Dixán Pérez, father of an 8-year-old boy with haemophilia
For Mr. Pérez, and many others living in Holguin, that journey to Havana is a difficult one. It takes 12+ hours, by car or on a crowded bus. For a child or anyone in need of urgent care, such a long journey is unbearable and may be life-threatening. And for those living in Santiago de Cuba the journey is even more challenging.
Access to care often means 12+ hour journey for people with haemophilia living in Eastern Cuba
Dr Dunia Castillo and her team had achieved tremendous results in the Cuba 1 project. And fortunately for Mr. Pérez and many others across Cuba, this team was just getting started.
Here is what they were able to achieve over the course of the Cuba 2 project:
· They created a national network and national registry to allow centralised information and help define care needs for each region
· Purchased lab equipment and trained lab technicians in Holguín and Santiago de Cuba to improve ability to identify and diagnose blood disorders
· Created educational posters and material to provide key information about haemophilia to help healthcare professionals and people living in the city identify haemophilia
· Organised multiple training sessions for nurses in Holguín (33 participants) and Santiago de Cuba (28 participants)
· Conducted a workshop on orthopaedics with specialists in paediatric and adult care
Healthcare professionals in the Eastern provinces of Cuba are now empowered to provide care in their city, thanks to the commitment of highly dedicated doctors such as Dr Dunia Castillo.
The culmination of the Cuba 2 project came in December 2018, when healthcare professionals, people with haemophilia and caregivers convened to celebrate the closing of the NNHF Cuba 2 project and the progress they had achieved together. It was a lively event filled with debate, discussion, warm exchanges, and lots of smiles. The group was proud of the progress they had achieved as a team and were optimistic about the momentum they had created.
At the start of the project, they were facing situation of inequality, where access to haemophilia care was often different for people living in the capital and in the West part of the country. At the project’s end, they celebrated as one.
“Before the project there was no organised care for people with haemophilia. Thanks to this project, we have now in Holguin a centre, new equipment and patients are treated by a multidisciplinary team, responding truly to the needs of people with haemophilia.”
Dr Yenilet Escalona Vives, haematologist at the paediatric hospital Octavio de la Concepción y de la Pedraja in Holguin
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