Panama: with dedication to self-sufficiency
Following the first two NNHF-supported projects, Panama was approaching self-sufficiency in haemophilia care. Two priorities remained: strengthening the referral system and establishing specialised care for adults. The third NNHF Panama project successfully filled this gap. Panama now has a functional referral system and can provide specialised care not only for children but adults too. And while NNHF provided the tools for this milestone, it was the local patient organisation Fundación Panameña de Hemofilia’s (FUNPAH) dedicated work ensuring that these measures were no single efforts. But ones building lang-lasting care systems.
Haemophilia care for children in Panama had improved significantly since NNHF’s support began in 2008. When the latest and third NNHF project started in 2023, children with haemophilia received multidisciplinary care at the children’s hospital in Panama City. In rural Panama, a network of 20 satellite clinics provided basic care. This network had grown from six clinics initially supported by NNHF, with the Ministry of Health later expanding the model by adding 14 more.
Yet, the transition from paediatric to adult care was closer to an abrupt ending than a continuation. Adults with haemophilia had no comparable dedicated specialist service. Appropriate treatment and multidisciplinary support were difficult to obtain. FUNPAH, led by their dedicated director Alaisa Araúz and devoted nurse and treasurer Luz Villalaz, was on a mission: establish the missing regional and adult clinical services to guarantee a well-structured transition from child to adult care.
“Alaisa and Luz are the glue between the authorities and the medicals. They bring the people together, raising awareness and finding viable solutions. Solutions that last within Panama’s context”
High quality, specialised care for adults too
Together, FUNPAH and NNHF built the necessary partnership with the healthcare professionals of the Santo Tomás hospital to improve the transition from paediatric to adult care. A radiologist, physiotherapist, physiatrist and an orthopaedic surgeon all received specialised training such as in Milan, Italy, bringing home the capacity to treat patients in Panama City.
These fellowships established a regional medical network, through which professionals now continue to exchange and learn. Knowledge started cascading within Panama to various healthcare professionals, and Panama City is now becoming a regional training hub, sharing its knowledge with countries like Peru and Guatemala.
Strengthening the satellite referral system in rural Panama
In the rural parts of Panama, FUNPAH monitors the 20 satellite clinics across the country to ensure a functional referral system. During this project NNHF supported further improvements: eleven centres were upgraded with essential equipment for proper treatment storage, and in six seminars, 170 healthcare professionals received training from national and international specialists in the fields of haematology, nursing, diagnosis, psychology, social work, pharmacy, and dentistry.
The satellite clinics’ expertise drastically cut patients’ travel time by an average of 12 hours, letting people with haemophilia stay closer to work, home, school, and other responsibilities while receiving quality care.
Previously, they had to choose: travel far for treatment and absorb high travel costs, or stay home to work, care for family, or attend school. Now, they can do both: stay engaged in daily life and get the treatment they need, significantly reducing the risk of serious complications from undertreatment later on.
And this decentralised approach paid off: the diagnosis rate in Western Panama rose from 29 to 44%, driven by Alaisa’s and Luz’s targeted home visits urging suspected patients to visit one of the satellite clinics. More people are now advised and cared for without strenuous travels to the nation’s capital.
Sharing the learnings for the next steps
Alaisa understood that knowledge transfer itself needed to be decentralised to make these milestones last. During this project, FUNPAH developed and piloted the model “Parents Educating Parents” (PEP) and was engaged in the national sickle cell disease (SCD) workshop supported by NNHF to share their learnings and insights. The next phase of NNHF support will build on this experience, expertise and infrastructure to advance SCD care.
