The Severely Anemic Thalassemia Control Bill

If any criticism is to be made on the Thalassemia Control Bill (Bill No 16/2011), it is not because such legislation is not welcomed, or the significance of the plight of children affected is any lesser than any other sick child. But it is to be criticized for its lack of comprehensive measures to control thalassemia, the lack of its evidence-based justifications, and for its many technical errors.

The numerous technical errors in the Bill show the complete disregard by lawmakers of the technical advice and feedback provided to the draft Bill.

To begin with, there is the problem of the definition. The definition of thalassemia given in the Bill is so broad that any similar condition with anemia falls in to it. Leaving aside the question of whether a definition is needed at all in the Bill, the provided definition is not one that can be found in the medical literature. If the provided definition was so that all patients with hemoglobinopathies other than thalassemia could be covered in the provision of services, it would have been welcomed. But the rest of the Bill provides no opportunities for patients with other hemoglobinopathies, and even restricts treatment to thalassemia patients alone.

Secondly, the bill makes it compulsory for all persons to be tested and also all persons below 18 years of age to be tested. The carrier rate is 18%, meaning that the majority of the population is normal, and therefore testing everyone is a waste of resources. There is no point in testing children born to normal parents, and also those adults wanting to marry who know that their parents are not carriers or a normal. Testing should be mandatory for those intending to marry, and that only one partner need to be tested which will cut down costs by half. The requirement for all to be tested must be removed.

Thirdly, Article 8 states that all persons with symptoms of thalassemia be registered, whereas it is those who are diagnosed with thalassemia that need to be registered. There are many other diseases that have similar symptoms to thalassemia.

Fourthly, the Bill requires that hemoglobin level be kept from falling below 9.0 and that parents are responsible to ensure this by bringing the child for treatment. This completely ignores the fact that hemoglobin is not the only determinant of care. Additionally, an adult patient can refuse treatment, and the parent cannot be held responsible for failure to adhere to treatment. Furthermore, care providers cannot be asked to force treatment on an adult competent patient who is refusing treatment.

Unambitious and Unclear and Mandate

Effective control of thalassemia requires ambitious and bold steps. It needs to address controversial issues such as prenatal diagnosis, selective abortion, and the just distribution of resources. The law making process in the Majlis provides an opportunity for lawmakers to bring such issues to the floor and to legitimize them.

However, no one had the courage to discuss the real issues and to enforce effective measures. Artcile 7 of the Bill merely states that the NTC is charged with determining what preventive programs are to be taken up, leaving the mandate and approach largely to whoever is running the center. This person may or may not be willing to take up current recommended practices.

The Bill should have had a clear objective of controlling thalassemia rather than stating “to bring down the rate at which thalassemia increases in Maldives”. If the Bill was designed to have any real impact on the current situation, the following should have been included explicitly and MPs should have debated on these issues to come to a consensus and legalize them;

• Prenatal Diagnosis (PND): This is key in identifying affected children and several couples already seek PND abroad at their own expense. PND can be done in Maldives as there are trained persons. 
• Option for Medical Termination of Pregnancy (MTP): after PND, the option for MTP must be made available, together with counseling services for those refusing MTP
• Targeted testing/screening: Not everyone in the population need to be tested and screened. Furthermore, this will cut down costs.
• Targeted Awareness Programs: Society for Health Education (SHE) already has statistics on where the carrier rate is highest and the awareness programs can be targeted and intensified in these areas.
• Patient Engagement; in determining how the services are to be provided and to improve on care provision

By failing to incorporate these important aspects, either through ignorance or arrogance of MPs, the Bill has become a useless, severely anemic piece of legislation to control thalassemia and to provide effective treatment to the affected children. The regulations that followed from the legislation naturally lacked any direction to really impact the lives of thalassemic patients. The ongoing dissatisfaction of thalassemia patients with the services they receive is a testament to this.

For whatever reasons, the Bill was twice rejected by President Nasheed even after being passed by the Majlis. The rejections provided an opportunity to restructure and strengthen the Bill with the feedback from the technical people and patients, instead of being ratified by President Waheed for political reasons. It was an opportunity to move away from the failed approach that is currently in place. It was an opportunity to ensure the right to quality care for thalassemia patients.