Programme title: Outreach to patients with haemophilia in the province of Jujuy
Partner: Fundación Jujeña de Hemofilia (FUJUHE)
Represented by: Dr Susana Gastaldo
Start/end date: Q4 2016 – Q1 2018
Buenos Aires has well-established haemophilia care where people with bleeding disorders are able to flourish. But Jujuy presented a very different landscape. In the province of Jujuy, people with haemophilia were often completely isolated from care. In many cases, they had not even been properly diagnosed and were living in an environment without any resources or support.
For years, doctor Susana Gastaldo had considered taking on this challenge, and in 2016, she and her team were finally ready to act. With this project, they set in motion an initiative that would include over 6,000 km of travel, engage dozens of towns and involve hundreds of people. In fact, this effort eventually gained the attention of the Ministry of Health, whose support would lead to an expansion of scope for the project.
Over 15 months, the project made achievements on many levels. The team completed over 6000 km in travel to reach 13 care centers across the region. Visits included El Carmen, Monterrico, Perico, Calilegua, Fraile Pintado, Tilcara, Maimará, Huacalera, Humahuaca, Abra Pampa, Libertador General San Martín, San Pedro and La Quiaca.
Spreading better care
A vast array of people who make up the foundation of a haemophilia support community were trained through this programme.
- All combined, the team trained 20 paediatricians, 5 biochemists, 5 clinicians, 20 pharmacists, 100 nurses, 4 physiotherapists and 20 technicians in haemotherapy
- To compensate for the lack of specialists in many locations, the team also trained 150 nurses and 300 students of second and third year of nursing school (future primary care agents)
- To further improve care, the team handed out brochures, basic guidelines, questionnaires and care guides
- The team conducted a hydrotherapy workshop and a sexual health workshop with people with haemophilia.
While the list of accomplishments is impressive, what made an unforgettable impression on the entire project team was the interactions they experienced throughout the region. Each visit was welcomed with gratitude and an eagerness to learn and contribute. Dispelling the isolation had a powerful effect and ultimately planted the seed that will grow into a sustainable improvement in care.
The NNHF vision is that all people with haemophilia or allied bleeding disorders receive care and treatment wherever they live. This project took the idea of “wherever they live” and created remarkable growth in this area.
Take a look at the photos below to see the flourishing effect that the project team had throughout the year.