Parents Struggle with Emotional and Financial Burden as Haemophilia Treatment Delayed

A parent of a child with Haemophilia B has accused the Maldivian healthcare system of extreme negligence, highlighting the significant emotional and financial burden families face amid uncertainty over access to essential treatment.

Haemophilia B is a rare blood-clotting disorder caused by a deficiency of factor IX, which prevents blood from clotting properly and can lead to severe bleeding even from minor injuries. Speaking to MV+, the parent described the healthcare system as unprepared to manage the disease safely.

“We have no facilities to test for factor IX levels before giving injections. We have no choice but to administer them blindly,” the parent said. He added that the World Federation of Haemophilia had offered support to provide testing equipment, which the government allegedly rejected due to the small patient population.

The family also raised concerns over the absence of haematologists in the Maldives, despite the prevalence of blood disorders such as thalassemia, which affects around 16 percent of the population. Orders for life-saving factor IX injections placed through Aasandha’s VIRA system in October last year have reportedly not been fulfilled, leaving children at risk of internal bleeding.

A single factor IX injection costs around USD 500 and must be administered weekly, meaning four injections per month exceed MVR 30,000—a sum beyond the reach of most Maldivian families. According to the Maldives’ 2019 Household Income and Expenditure Survey, the national average monthly household expenditure was MVR 28,251. Households in Malé spent an average of MVR 37,013, while those in the atolls spent MVR 20,177 per month. The Maldives Bureau of Statistics announced in January they plan to update the survey this year.

The parent criticised local insurance companies for refusing coverage for children with genetic health issues, leaving families reliant on limited donations from the World Federation of Haemophilia. He added that families must travel abroad annually at their own expense to secure treatment. 

“Even next month, [on the] 18th, we are going to Malaysia for this year’s conference. Unless we do so, we can’t get this international aid for our children,” he said.

In November 2025, families sought a meeting with Health Minister Abdulla Nazim, who was reportedly unavailable at the last minute. They met instead with State Minister for Health and MD of State Pharmaceutical and Medical Supply Corporation Limited, Dr Shah Mahir, who assured them the import process for the injections was ongoing and praised the formation of the “Hemophilia Society of Maldives.” Five months later, the injections have still not arrived, and the families report no follow-up from authorities.

He said that after the matter was reported by other media last week, officials contacted them to verify which medications should be procured. He described the delay as concerning, noting that it suggested orders had not been placed earlier and that efforts to secure the required treatment were only now being initiated.

Photographs show visible bruising and haematomas on children due to the lack of treatment. The parent said access to factor IX injections was uninterrupted under previous governments, but new procurement systems have stalled.

According to him, 22 people are officially known to have Haemophilia B in the Maldives, though the parent believes many more may be undiagnosed due to the absence of testing equipment. He stressed the lack of a government registry and the system-wide failure to prioritise rare but life-threatening diseases.

“The Maldives is simply not prepared to deal with possible increased diagnoses,” he said.

Families have appealed to the President, Ministry of Health, and the State Pharmaceutical and Medical Supply Corporation Limited to urgently provide the medicine and strengthen the import system, stressing that saving lives must be the state’s foremost responsibility.