Scar behind poor haemophilia awareness

DAR ES SALAAM: HAEMOPHILIA is a blood disorder that affects the body’s ability to clot blood, caused by a deficiency of essential clotting factors. Global statistics show that one in every 10,000 people has haemophilia, which may either be inherited or acquired through other means.

Research further indicates that 70 per cent of haemophilia patients inherit the condition, while only 30pc acquire it through other causes. To date, more than 90 per cent of haemophilia patients in Tanzania remain undiagnosed and continue to lack proper treatment due to limited awareness.

These figures come as Tanzania is estimated to have about 6,700 people living with haemophilia, yet only 600 patients equivalent to 10 per cent have been diagnosed and are receiving treatment.

The story behind haemophilia

A haemophilia patient, Mr Mgaza Muhina, says he was born with the condition but remained unaware of it until he underwent circumcision at Mbeya Regional Hospital. He explains that after the procedure, he experienced prolonged bleeding, which forced doctors to urgently refer him to Muhimbili National Hospital (MNH) using hospital transport.

During that period, he did not receive appropriate care, as he was treated as a sickle cell patient, leading to several health complications. To manage the condition, he relied on Vitamin K and Adrenaline medication for more than 17 years until he joined the Tanzania Haemophilia Society. “Before that, I had already developed a disability caused by haemophilia.

I had problems with my leg because there was no proper treatment. “Later, I also developed complications in my arm. There were neither treatments nor specialists,” he says, adding: “In 2009, we established the Tanzania Haemophilia Society and began seeking donors.

In 2013, we started receiving proper treatment. Before that, the treatment we received was not appropriate.” Mr Muhina says the condition caused him to suffer severe anaemia nearly three times a year until he finally received proper treatment, which improved his condition.

“Haemophilia is not just about bleeding. It also causes disability, reduces national productivity and affects the workforce,” he says. He emphasises that there is still a major gap in haemophilia awareness, urging healthcare providers to effectively use haemophilia clinics to deliver proper education and services.

“If you understand haemophilia, you can control it. But if you don’t, it can cause serious challenges. You may go to bed healthy and wake up disabled,” he says.

Mr Dominick Seye, a patient and Vice-Chairperson of the Tanzania Haemophilia Society, says his main symptom was swelling in the knee.

He recounts that a doctor at Peramiho Hospital in Songea took a blood sample for testing but was shocked to see unusually dark blood and halted the examination.

In 2009, he was referred to Tumbi Hospital and later to MNH, where he was diagnosed with haemophilia. He explains that limited knowledge of haemophilia at Tumbi Hospital led to him undergoing surgery, which resulted in permanent disability in his knee.

ALSO READ: Leadership lessons from India offer insights for Tanzania

Mr Devotha Ngerezya, a resident of Sengerema, says she gave birth to a child with haemophilia in 2006, though the condition was only discovered seven months later after the child sustained a finger injury. She says she began attending clinics in 2010, and in 2019 her child finally received offiial haemophilia tests services that were not available in many public hospitals in the Lake Zone.

“The challenges we face are many. At first, we didn’t understand the problem. The child would be in pain and swollen, and we didn’t know how to treat him. “We used hot water massage, which worsened the pain. Then we tried ice it was the same until he healed,” she says, adding: “At one point, his back became so swollen that he could not stand. Later, we went to Bugando Hospital where he received an injection and improved.”

Strategies to control haemophilia

The Coordinator of the Integrated Haemophilia and Sickle Cell Project, Mr Abdallah Makaka, confirms these findings, admitting that low awareness has prevented many patients from accessing proper care on time. Mr Makaka says the Tanzania Haemophilia Society has identified low awareness and widespread misconceptions about the disease as the root causes of the problem.

To address this, the government, in collaboration with the Haemophilia Society, has introduced an Integrated Haemophilia and Sickle Cell Care Programme.

Speaking during the programme’s launch in Geita, Mr Makaka said the initiative aims to strengthen service delivery and bring haemophilia clinics closer to communities.

The programme is funded by the Haemoglobinopathies Foundation, with the goal of expanding haemophilia and sickle cell clinics to health centres and dispensaries.

“People with haemophilia require close monitoring to prevent disability, bleeding and death. This requires accurate testing to determine the type of haemophilia whether factor VIII or IX deficiency.” Mr Makaka notes that challenges in obtaining patient data and monitoring cases have delayed the supply of medicines from donors.

He adds that the project focuses on strengthening haemophilia services and providing training to healthcare workers, clinicians, and doctors in regional and referral hospitals. So far, clinics have been established at major referral hospitals including Muhimbili, Bugando, KCMC, Mbeya and Benjamin Mkapa Hospital in Dodoma.

Additional clinics have also been launched in regional hospitals in Morogoro, Kigoma, Manyara, Tanga, Mara, Tabora, Rukwa, Kagera and Zanzibar. In the next phase, six more regions Geita, Shinyanga, Singida, Lindi, Ruvuma and Njombe will receive clinics in collaboration with the Ministry of Health.

Mr Makaka says the goal is to ensure all hospitals in Tanzania can diagnose and treat haemophilia. Since 2021, about 1,600 healthcare professionals have been trained to detect, manage and treat haemophilia patients.

“The project has also funded 13 doctors from Muhimbili National Hospital to receive specialised training abroad. Eight specialists went to Kenya, three to South Africa and two to India,” he says.

The project has also funded laboratory equipment worth over 150 million Tanzanian shillings in referral hospitals and supplied medicines worth 120bn/- for the year 2025. At Geita Regional Referral Hospital, the project has provided laboratory reagents worth 1.57m/-, physiotherapy equipment worth 5.65m/- and medicines worth 525m/-.

Government’s response

The Medical Officer in Charge of Geita Regional Referral Hospital, Dr Fatma Sitta, says a large team has been trained on haemophilia and sickle cell disease over three days.

The training included paediatric specialists and surgeons who will integrate haemophilia and sickle cell services. Geita Regional Medical Officer, Dr Omari Sukari, has directed all hospitals in the region to prioritise integrated care for haemophilia and sickle cell patients and provide timely services.

“You should act as ambassadors to those who did not attend this training. Go and educate them that haemophilia exists. Let us continue educating the community so they understand what haemophilia is, its symptoms, and that we have the capacity to treat it within our region,” he says.

Dr Sukari says they plan to conduct regular inspections and follow-ups to ensure haemophilia patients receive proper care and maintain their health.