Sickle cell anemia, which is seen in the Tharu community of western Nepal, is becoming a challenge for the health sector. Treatment and prevention of sickle cell anemia is becoming a challenge. The district has a majority Tharu community.

The lack of timely diagnosis of hereditary diseases in the community is making it difficult to treat.

According to the doctor, this disease is transmitted from mother to child. It is also not completely curable. It can be controlled by taking regular medicine as per the doctor's advice. Since it is hereditary, it seems that special attention should be paid to prevention rather than treatment. 

To avoid this, young men and women of the Tharu community have to get their blood tested and have their sickle cell horoscope checked before marriage. According to the district health office, 107 such patients were diagnosed in the fiscal year 079/080, 137 in the fiscal year 080/081, and 116 in the fiscal year 081/082. 

The office has stated that the number can increase as much as the tests can be increased. The office says that if there is no prevention, health problems will become more complex in the future. Until a decade ago, patients had to endure suffering for diagnosis. They were forced to spend a lot of money. However, that is not the case now.

Free sickle cell testing and treatment services are available in the district and some local level municipal hospitals. This has provided relief to the poor. The district hospital has stated that such patients are receiving free treatment through health insurance after being recommended by the concerned municipality. 

The number of patients taking regular medicine for sickle cell anemia from the district hospital is currently 218. Free sickle cell anemia testing is being conducted in four places in Bardiya, said Shrestha, the information officer of the health office.

She said that free testing will be conducted at Bardiya Hospital, Rajapur, Thakurdwar Baba and Barbardiya Municipality Hospitals here. ‘There are sometimes problems in operating the machine due to the lack of availability of a chemical called reagent,’ she said. ‘The government has provided free insurance and treatment services to sickle cell anemia patients, which has brought relief to the general public.’ 

According to doctors, sickle cell patients have sickle-shaped blood cells. They often experience severe body aches, low blood count and jaundice. To prevent the spread of the disease, marriages have started by looking at the sickle cell/thalassemia horoscope. It is considered necessary for young people of the Tharu community to get their blood tested before getting married and to match this horoscope. 

The horoscope states that sickle cell patients should not marry. According to the horoscope, marriage can be done between 50 percent normal and 50 percent sickle cell carriers. However, it is said that 50 percent sick and 50 percent carriers cannot marry. The horoscope states that it should be considered when marrying between 25 percent normal, 25 percent sick and 50 percent carriers. 

Govinda Poudel, health coordinator of Barbardia Municipality, said that during a research project with the support of the Health Research Council, 20,000 people under the age of 30 were examined, 11 percent carriers and 12 percent sickle cell anemia patients were found. 

‘Barbardiya is the first municipal-level hospital in the country to treat sickle cell,’ he said, ‘The hospital is providing free sickle cell anemia testing and treatment to patients.’ Counselors trained in sickle cell anemia provide counseling to patients at the hospital. This is taught in grades 8, 9 and 10 of schools in the municipality.

The municipality has allocated budget for blood donation and chemicals for sickle cell testing every three months. Meanwhile, budget has been allocated for awareness in 11 wards of the municipality. Every year, doctor Rajan Pandey is called and training is provided to the municipality’s health workers and teachers. Health Coordinator Poudel said that children undergoing treatment at the hospital are regularly monitored by pediatrician Pandey.

Public Health Officer of Gulariya Municipality, Shiva Kumar Chaudhary, said that the federal government receives budget every year for public awareness about sickle cell as a joint non-communicable disease. He said that the government will refer sickle cell patients to the district hospital to receive the services provided. 

If sickle cell patients are detected, they are sent to the district hospital for treatment  Madhuban Municipality Public Health Officer Geeta Ghimire said. ‘The municipality has been distributing folic acid to such patients free of charge for two years,’ she said. ‘In the current fiscal year, the municipality has allocated a budget to put up sickle cell horoscope hoarding boards in every village to create public awareness.’

Thakurbaba Municipality Health Branch Chief Rajendra Subedi said that such patients are being tested and treated free of charge at the municipal hospital. ‘Since there is a sickle cell testing machine, patients do not have to go elsewhere,’ he said. ‘Work is being done to connect patients with insurance programs and spread awareness for disease reduction.’

Rajapur Municipality Health Coordinator Ganesh Prasad Aryal said that they have brought two machines and have been testing and treating sickle cell patients free of charge for the past nine years.

‘For awareness, sickle cell is taught in the syllabus of grades 9 and 10,’ he said, ‘We are also providing counseling for marriage after testing blood, patients need to be given blood transfusions frequently, that is why blood transfusion services have been started for 1 year.’ 

Free sickle cell testing is being conducted at the municipal hospital, said Harihar Tiwari, health officer of Bansgadhi Municipality. ‘We are providing information about the facility of one lakh,’ he said, ‘We are referring patients to the appropriate hospital if they need blood immediately.’

Narayan Prasad Bhandari, public health officer of Geruwa Rural Municipality, said that since the municipal hospital is under construction, suspected sickle cell patients are being referred to the district hospital. ‘There is some budget this year for public awareness of sickle cell,’ he said, ‘There is a plan to conduct a public awareness program in a few days.’