Zambia 1 project: Informing, building and changing lives

Partner institution
Haemophilia Foundation of Zambia – HFZ

Represented by
Chilufya Pikiti

2 years, Q2 2017 – Q2 2019

Low awareness and access to haemophilia care had been issues in Zambia for years

In 2018 the Zambia Ministry of Health launched a country-wide initiative to promote voluntary male circumcision.

Although considered a safe procedure, circumcision may represent serious risks to people with haemophilia who can experience bleeding that lasts for days. It has the potential to lead to all manners of complication and ultimately, if not treated, to death. Families all over the country faced situations similar to what Comfort Chanda and his family experienced.

The Haemophilia Foundation of Zambia-HFZ transformed this challenge into an opportunity. Millions of young men getting circumcisions was a rare chance to identify people with haemophilia.

The same year, a 10-year-old boy named Comfort Chanda was among the 1.4 million males in Zambia who were circumcised. The operation seemed to be successful and Comfort went home with his family. But the bleeding did not stop. For three days, Comfort’s family tried desperately to stop the bleeding until they finally rushed him back to the hospital.

Thankfully, one of the nurses who saw Comfort had received training in haemophilia and blood disorders that was part of the Zambia 1 project. The nurse recognised Comfort’s bleeding and referred him to the haematology department. Comfort was given further tests and was diagnosed as having haemophilia A. With this knowledge they stopped his bleeding and avoided the worst to happen. 

This is just one of many success stories from the Zambia 1 project.

Recognising Zambia’s challenges

The project started with Chilufya Pikiti and his team at the Haemophilia Foundation of Zambia-HFZ defining the fundamental challenges that people with haemophilia faced in Zambia. The general public and even the medical community had extremely low awareness about haemophilia. Bleeding disorders were not something most people were aware of at all. To go along with a lack of awareness was a lack of access to care. For the small number of patients who were diagnosed, there was very little access to qualified care.

Ms Mercy Chunda Mpamba Physiotherapist and Simeon Imbeza, 11 years old patient with severe haemophilia A

All of this led people with haemophilia to be isolated and alone. They had very low levels of knowledge about the condition and empowerment was sorely lacking.

The Zambia 1 team took these challenges on by acting on multiple fronts.

Addressing awareness

The team showed great resourcefulness and creativity in their efforts to increase public awareness.

  • They created and distributed 2,000 posters and 10,000 leaflets that provided basic education
  • They organised awareness activities in the Mukuba Mall in Ndola and Cosmopolitan Mall in Lusaka
  • They created a short documentary about haemophilia and got it broadcast on national television as part of the World Haemophilia Day activities

But their crowning achievement came during health week, when their awareness activities at Arthur Davison Children’s Hospital in Ndola were officiated by the First Lady of Zambia.

Addressing access

The team had a plan to refurbish two rooms in the UTH Children’s Hospital in Lusaka. But those plans were swept aside when the hospital management team were only able to offer them an entire hospital ward. And to add to the challenge – the renovation had to occur in only two months.

This was a daunting task, but the team worked day and night to achieve this goal. By World Haemophilia Day in April of 2018, the team and the entire hospital celebrated the opening of the first Haemophilia Treatment Centre in Lusaka. They had built a treatment facility capable of providing a major step forward for haemophilia care in Zambia.

“We felt challenged and inspired by the wonderful works establishing the Haemophilia Care and Treatment Centre. As a result the hospital management got motivated and decided to uplift the standards of the UTH-Children’s Hospital.”

Dr John Musuku: Senior Superintendent at the University Teaching Hospital- Children’s Hospital.

Creating empowerment

In August of 2018, the team hosted their first ever haemophilia camp with the theme of “self-care.” The agenda was ambitious, and the participants aged from seven to thirty-five learnt to self-infuse.

Comfort Chanda, self-infusing as he has just learned at the “self-care” haemophilia camp organised by the project team

The star pupil at camp? None other than Comfort Chanda. Comfort showed remarkable courage. He bravely stepped up, and in minutes had followed the instructors’ example and infused himself like they had demonstrated. Throughout the camp, Comfort was a model of positivity and self-empowerment.

“I can proudly, say that the partnership with the NNHF and other stakeholders has helped us in moving towards the direction of providing holistic care for people living with haemophilia. As the famous African says “It takes a village to raise a child”.

Chilufya Pikiti – Founding Member of Haemophilia Foundation of Zambia.

The team approach allowed to impact both urban and rural areas. The team’s work led to thousands of targeted examinations, prevented hundreds of dangerous bleeding episodes, and diagnosed 113 people with haemophilia.

From building an HTC to massive training efforts to a World Haemophilia Day that no one will forget – the team forever impacted the life of Comfort Chanda and the lives of people with haemophilia all across Zambia.

Inspired by their story?

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