The Maldives Thalassaemia Society has raised concerns following the death of eight patients over the past two months.
Thalassaemia patients require regular blood transfusion due to abnormal haemoglobin production. The Maldives has the highest prevalence of the inherited blood disorder in the world and the number of Thalassaemic patients have been on the rise.
In a statement last week, the Maldives Thalassaemia Society expressed concern over the poor management and treatment of patients in the country, stressing the lack of improvement over the years “despite rigorous efforts and work from our side.”
MTS was established as an NGO in 1996 to advocate for the rights of Thalassaemia patients and their families.
Since the statement was released last week, a ninth Thalassaemia patient reportedly died on Thursday. The 18-year-old girl from the Alif Dhaal Maamigili island passed away while undergoing treatment in India.
Some of the issues highlighted in the statement include:
- Life-threatening complications or death as a result of not administering age appropriate treatment
- Lack of a Thalassaemia specialist at the Thalassaemia centre
- No system of referral between Thalassaemia centre and IGMH
- Lack of specialists for Thalassemic patients overall
- High turnover of doctors in the Thalassaemia centre
- Absence of psychosocial support for patients
- Discrepancies in treatment provided for Thalassaemic patients in Malé and other islands
- No adequate system to maintain records of patients
There are 628 patients alive out of the 883 Thalassaemia patients registered in the Maldives. Their treatment is funded by the state.
According to MTS, many Thalassemia specialists have been brought to the Maldives on various occasions to train local doctors assess the situation of patients, and reports compiled based on the expertise and recommendations of international experts have been shared with the health ministry and other relevant authorities.
But there have not been any significant progress in the treatment and management of patients despite considerable government spending, MTS noted.
Providing adequate medical services for Thalassaemia patients in all parts of the country was a campaign pledge of President Ibrahim Mohamed Solih administration.