Due to the lack of treatment facilities in Birendranagar, which has a provincial hospital and other private health institutions, sickle cell patients from Karnali are forced to travel to Nepalgunj in Lumbini Province for regular tests and to buy medicine.
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Prem Bahadur Chaudhary of Birendranagar Municipality-10 in Surkhet is a sickle cell anemia patient. Suffering from this disease since 2073 BS, he has not been receiving treatment in Birendranagar, Surkhet, the capital of Karnali Province.
Unable to get treatment at Birendranagar, which has both provincial and private hospitals, he is forced to travel to Nepalgunj in Lumbini Province for regular medicine and treatment. He said that he has been traveling to Nepalgunj for treatment since the disease was diagnosed. Prem Bahadur said that traveling far to get medicine costs more than treatment, and the cost of transportation and accommodation is more than the cost of treatment.
Not only Prem Bahadur, but all sickle cell anemia patients in Surkhet are forced to travel to Nepalgunj in Lumbini Province for treatment. Since there is no hospital in Surkhet for sickle cell treatment, patients have to travel to Bheri Hospital. Sickle cell patients, who need to undergo mandatory health check-ups once a month, suffer from financial, physical and mental problems when they have to travel from Surkhet to Nepalgunj.
‘The patient needs medicine worth around Rs. 2,000 per month.’ "We have to bear more suffering and financial burden than the cost of treatment and medicine," said local Bimala Chaudhary. "It takes two days and 5,000 more than the cost of transportation to go to Nepalgunj to get tested and get medicine." She complains that discrimination and abuse also occur when going out for treatment. She said that treatment and medicine can be arranged in Surkhet itself and treatment can be done for a small amount.
Prem Bahadur urged the provincial hospital to make arrangements for treatment and getting medicine in Surkhet. He complained that having to go far away for treatment is an additional mental and financial burden on the patient. On the one hand, the patient is not able to reach the affected community and on the other hand, the problem has been added to the problem because the patient is not able to access easy treatment, said Dil Bahadur Chaudhary, chairman of the Sickle Cell Community Hospital and Research Center, Surkhet.
This organization, which has been advocating for the study of sickle cell and the rights of patients, has been demanding that medicine and treatment facilities be made easier from time to time. ‘Sickle cell anemia has started affecting generations of the Tharu community. But when the stakeholders take it for granted, the disease is increasing,’ he said, ‘Medicine and treatment should be arranged in Surkhet for easy treatment of this disease affecting the poor Tharu community.’ He said that it would be easier if sickle cell patients could be provided with identity cards and treatment expenses.’
Ramkrishna Tharu of Birendranagar Municipality-9 Kalimati says that he is having trouble going to Nepalgunj due to the lack of treatment facilities nearby. ‘My own family is suffering from the disease. Having to go to Nepalgunj for treatment there has become a financial burden. I am selling my land and meeting the treatment expenses for my family,’ he said.
This disease, which is seen only in the Tharu community living in the Terai, has also been seen in the Tharu community living in Surkhet, Karnali. This community lives in Surkhet, Karnali. 41 sickle cell sufferers from Birendranagar are using the medicine regularly.
Tharu community expert on sickle cell anemia and department head of Nepal Sanskrit University Dr. Surendra Chaudhary informed that the number of patients with this disease is also increasing in the Tharu community living in Surkhet. In a survey conducted in 2080, 70 out of 737 people in Surkhet were tested and 18 out of 201 people in the survey conducted in 2081 were found to have sickle cell anemia. He said that if the scope of testing is increased, the number of patients will increase.
According to the National Census 2078, the population of the Tharu community in Surkhet is 7,000 more. Currently, there are about 9,000 Tharu community members, but Tharu community leaders say that testing has not been done sufficiently.
Public Health Inspector Kiran Sharma of the Karnali Provincial Health Services Directorate said that the provincial government has allocated a budget of Rs 10 million for the treatment of 12 complex diseases. He said that this includes sickle cell anemia, so initiatives will be taken to manage treatment costs in the current fiscal year.
