A condition that is a serious threat to Tharu population in Nepal
Sickle Cell Disease
Suvecha Dahal, Senior Content Creator
Seventy-year-old Tharu woman Devani Devi Dagaura of Masuria village in Kailali visited local faith healers, looking for answers about the failing health of her children and grandchildren. It was only after a proper diagnosis in the local hospital, Devi was told her four children had sickle cell anemia.
Her youngest son Ramesh died because of the lack of timely diagnosis. He was only 32. She is now worried for her daughter-in-law, who is heavily in debt and has little resources to treat 12-year-old son Aayush who has also tested positive for the disease.
(Story credit: Center for Investigative Journalism)
Sickle cells in comparison to normal red blood cells.
What is sickle cell disease?
Sickle cell disease is an inherited blood disorder where the red blood cells are abnormally shaped like a ‘sickle’. Healthy red blood cells are round and move through blood vessels to provide oxygen to the body. However sickle cells are sickle shaped and stiff. This leads to restriction in blood flow and difficulty delivering oxygen to organs, leading to severe health consequences. Sickle cells also die early, leading to a further shortage of red blood cells in the body.
However not all sickle cell carriers develop the disease. 75% of children born to parents who are both with sickle cell carriers develop the condition and with one parent infected, the probability is 25%.
It is estimated that more than 10% of people from Tharu community in Nepal suffer from sickle cell disease.
Why is this important?
In Nepal, the first sickle cell disease diagnosis was in 2003. Until then the prevalence of the condition in Nepal was relatively unknown. Now it is estimated that more than 10% of people from the Tharu community in Nepal suffer from sickle cell disease. While the prevalence of the disease has been known to be highest among the Tharu community, it has also been known to affect people from Chaudhary, Lama, and Neupane communities. It is crucial to give further research and a closer look to the condition because it is usually misdiagnosed, people from highly prone communities are unaware of this condition and those who are diagnosed have limited access to treatment.
Highly prevalent in malaria prone areas
Interestingly the prevalence of sickle cell disease is higher in areas affected by malaria. The gene for sickle cell seems to provide its carrier with resistance against malaria. This means that over generations, sickle carriers prevail and the condition is routinely passed down through families. Some of those that inherit the condition then develop sickle cell disease. Similarly, SCD is common in parts of Africa where prevalence of malaria is higher. Tharus from Tarai notedly have sevenfold lower prevalence of malaria.
A baby in a Tharu household in Kapilvastu district in Nepal. Sickle cell screening for newborns in prone communities could help manage the prevalence of sickle cell disease.
What are the numbers?
Research conducted by Tribhuwan University and Nepal Health research council has estimated that there are over 300,000 people in the Tharu community with the disease. It is more than 10% of the total population of Tharus in Nepal. In a free blood test camp set up in Kailali and Kanchanpur districts in 2016, out of 892 people who took the test, 145 were found to carry the disease, which is alarming. Because of the most impoverished conditions of people from these communities, they do not go for check-ups. This leads to a huge gap in understanding the actual number of people with the disease in the country.
The treatments and medication can often carry heavy financial burden for many people, especially those from lower socio-economic background.
What kinds of health problems are caused by it?
The restriction in blood flow due to sickle cells leads to a host of health complications. It includes and is not limited to severe chest pain, joint pain, abdominal pain, anemia and recurrent jaundice. Because it is a lesser known disease, patients in Nepal have often been misdiagnosed with arthritis, hepatitis or no diagnosis at all. Sickle cell disease is not curable but is manageable with medication and blood transfusion. It is a chronic condition like diabetes that requires long term care and management. But if untreated for a longer period of time, it can result in early death.
What are the hurdles to overcome and the way forward?
Limited research has been conducted to understand the prevalence, disease burden and socioeconomic barriers of SCD in Nepal. Research conducted so far is limited to case studies or focused on a particular area. In-Depth research will provide comprehensive data to inform strategies and approach to managing the prevalence of SCD in highly prone communities.
Accessible testing facilities
There are limited health care facilities with diagnostic services for SCD, especially in highly prone areas in Nepal. While it may be a big undertaking to have a widespread diagnostic infrastructure, screening tests equipment could be provided to frontline health centers. Patients with a positive screening test for sickle cell carriers could then go on for diagnostic tests or their blood could be sent for testing at certified laboratories where the facility is available.
Access to cost-effective treatment
Patients from Banke, Bardiya, Dang, and Kailali travel for hours to buy their medications from Nepalgunj. Other patients travel far and wide for testing and blood transfusions from well-equipped hospitals, even to India. The treatments and medication can often carry a heavy financial burden for many people, especially those from a lower socio-economic background. In a bid to provide some relief the government covers up to 1 lakh rupees of medical treatment provided to sickle cell patients from a government hospital. However, treatment costs are higher, leaving rural patients and their families fraught with debt and financial burden.
Raise awareness in highly prone communities
Due to limited awareness coupled with a high likelihood of misdiagnosis, people are usually unaware if they have sickle cell disease. While timely treatment can add years and save lives, late diagnosis can add to the severity of the disease. It is important to raise awareness in these communities and also in health care facilities about appropriate tests to timely identify the disease. Ideally, it could be effective to include sickle cell screening as part of routine newborn screening in prone communities in Nepal.
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