Experts speak to South First about how the screening of tribals and issuing of carrier cards may hinder achieving the National Mission for Sickle Cell Anaemia's goal.
The Centre is set to eradicate and eliminate sickle cell anaemia in the country. (Wikimedia Commons)
The Indian government’s decision to implement widespread screening for sickle cell anaemia, a genetic disorder prevalent in tribal communities, has raised concerns among experts.
While the National Mission for Sickle Cell Anaemia aims to eliminate the disease by 2047, the way the project is being implemented is concerning and may inadvertently hinder progress, fear experts working with tribal communities.
Speaking to South First, Dr Deepa Bhat, Genetic Counsellor, JSS Medical College and Hospital, who is also part of the Indian Council of Medical Research (ICMR) task force and is conducting research on sickle cell anaemia with tribals of Chamarajanagar and Mysuru districts, explains that the government’s previous efforts focused on laying the groundwork for the launch of this project.
“We are pleased that it has come to fruition. However, the major challenge we face is recognising that this is the first time a genetic disorder is being approached as a mission in our country. Unlike diseases such as tuberculosis or malaria that can be cured with medication, sickle cell anaemia is a lifelong condition,” explains Dr Bhat.
Individuals with sickle cell anaemia require continuous care from the time of birth. During the rainy season, they often experience three to four crises where the pain episodes are excruciating, preventing them from leading a normal life. The severity of these episodes ranges from intense stomach pain to excruciating chest and joint pains, which can even lead to thoughts of self-harm, she adds.
Dr Bhat explains that the Centre needs to rethink the approach being taken to implement this mission.
Karnataka identified 8 districts to start screening for sickle cell disease. (Wikimedia Commons)
Prime Minister Narendra Modi on 3 July launched the National Sickle Cell Anemia Elimination Mission in Shahdol, Madhya Pradesh. As part of the mission, the Centre has decided to screen 278 districts of India, for people between 0-40 years, mainly targeting tribal populations to stop the further spread of the disease.
The screening is being followed by awareness strategies to ensure early detection and treatment, while promoting education about the disease, as people may not be aware that they suffer from this disease and may unintentionally pass it on to next generation. The mission aims to eliminate sickle cell disease as a public health issue by 2047.
The government has also decided to give Sickle Cards, with instructions not to marry a partner with sickle cell anaemia. This is because those who have the sickle cell gene have inherited it from both parents, which carries a probability of about one percent.
Renowned rural health expert Dr Abhay Bang, immediately after the Centre launched the screening of sickle cell anaemia in tribal communities across the country, flagged concerns about providing healthcare to the tribal community. He calls the screening of the hereditary blood disorder “stigmatising” and “futile”.
“Population screening is a futile exercise because those detected to have the sickle trait usually hide that for the marriage market, defeating the original purpose. What’s worse is it stigmatises STs and SCs to be genetically inferior,” Dr Bang wrote in a letter to President Murmu, who had visited Gadchiroli recently.
Agreeing, Dr Deepa Bhat says that the problem is with the way the mission is being carried out. First of all, there should be an alignment between state health and central health, he opines. “It is a biggest challenge, they should take it as a health affair rather than a political affair,” he adds.
The tribal communities often view sickle cell anaemia screening as a source of shame and social ostracism, explains Dr Bhat. Evidence from Africa and American countries, which are almost 30 years ahead of India in addressing sickle cell anaemia, has shown that If the government doesn’t provide awareness to people and just start doing the screening, it could be more dangerous and may not even serve the purpose.
Awareness of the condition should come before the screening, opine experts. (Creative Commons)
She adds that this stigma is deeply rooted in misinformation and lack of awareness, which creates a barrier that prevents individuals from accessing the necessary healthcare services. To achieve the desired outcomes of the mission, it is imperative to address these challenges head-on.
Education and awareness campaigns are essential to dispel the myths and misconceptions surrounding sickle cell anaemia. By disseminating accurate information and fostering understanding, communities can be empowered to overcome the stigma associated with the disease and embrace the screening process as a vital step toward prevention and management.
Dr Bhat says that from their own research among the tribals of Chamarajanagar, this is what they have noticed. “I have the disease, my family has the disease but my neighbour doesn’t have it or few others in the community do not have this disease. They will start blaming themselves. We have already documented several blind beliefs they have around this disease: They are cursed, they have this disease as they have left the forests and come to the border, they have not followed the customs. They have such beliefs, so disease awareness is absolutely important,” she explains.
So dispelling myths and misconceptions surrounding the hereditary nature of the disease is key. By increasing awareness, affected individuals can make informed decisions regarding marriage and reproductive choices, reducing the risk of passing on the condition to their children.
As per a field officer closely involved with the Health Department, another obstacle facing the mission is the imposition of screening targets by state governments without adequate consideration. The department has been tasked with conducting 1-1.5 lakh screenings annually. However, no additional manpower or resources have been provided to effectively meet these targets.
“Even the Health Department is under pressure. With targets given at gun point, we are wondering how to achieve this with limited resources. Unrealistic targets with the kind of available facilities is going to be a major concern. Then the task is done only for the sake of doing,” explains an official, who did not want to be named.
Dr Bhat agrees that in the tribal areas, even the primary health centres do not have enough doctors, nursing staff, pharmacy staff due to non recruitments, and no one wants to come and work in such interior areas. In such a scenario, the burden then entirely falls on the ASHA workers.
“How much can you burden ASHAs? We can’t dump everything on them. This is what I am observing as a biggest threat to achieve the goal of the mission,” Dr Bhat opines.
Experts opine that adequate infrastructure and a well-trained workforce are essential to ensure that screening services are readily available to all, regardless of their social or cultural backgrounds. By investing in healthcare facilities and recruiting skilled professionals, the government can help alleviate the burden on existing healthcare systems and ensure that screenings are conducted efficiently and with sensitivity.
Experts suggest that while screening for sickle cell anaemia is a crucial step towards the elimination of the disease, it is equally important to address the potential negative repercussions that can arise from the process.
Experts emphasise the need for a comprehensive approach that tackles both the medical and social aspects of sickle cell anaemia. By fostering a non-discriminatory environment and providing appropriate counselling services, affected individuals and their families can make informed decisions about marriage and family planning, thus reducing the risk of passing on the disease to future generations.
Dr Bhat says that as a first priority, they could have concentrated on assessing the level of awareness in these communities. She says that a needs assessment survey should have been done first. They should have checked how much can be initiated at the primary health centre-level. “They can do the work but at what level in reality can we initiate this work?” she questions.
Also, the Information Education and Communication (IEC) component also talks about behavioural change communication. Dr Bhat says that this should be the first step before screening, rather than screening first and then following with awareness — as is planned now.
Dr Bhat further emphasises another critical issue related to the card system implemented by the government, specifically the issuance of “carrier cards”. She expresses concerns about the misinformation conveyed through these cards, suggesting that they wrongly imply that carriers should not marry each other.
There is a 25% chance of the child having sickle cell anaemia with both parents as carriers. (Creative Commons)
“The government’s approach of issuing ‘carrier cards’ sends the message that two carriers should not enter into a marriage. However, it is important to note that even if two carriers do marry, there is only a 25 percent chance of having an affected child. Denying the right to marriage based solely on carrier status creates a significant emotional burden for the entire community,” warns Dr Bhat.
According to Dr Bhat, a more suitable approach would be to allow individuals to proceed with their marriages. However, during early stages of pregnancy, they can undergo testing to determine if the baby is affected or not. Based on the test results, appropriate decisions, such as medical termination of pregnancy in case of an affected child or continuing with the pregnancy if the baby is not affected, can be made.
Furthermore, the issuance of carrier cards also presents challenges as individuals may choose to hide their card or withhold information about their genetic condition. This can lead to difficulties in identifying carriers within the community and providing them with the necessary support and guidance.
These issues surrounding the carrier card system highlight the need for a more comprehensive and compassionate approach to genetic counselling and reproductive decision-making.
Agreeing with this, Dr Devika Gunasheela, Chairman, Gunasheela IVF Centre, referring about a case from the Vidarbha region who had married a Mysuru girl and had visited the IVF centre in Bengaluru for treatment. During the test, they found that both of them coincidentally were sickle cell carriers. However, of the 11 embryos that were tested, one embryo was sickle cell free.
“The couple went ahead with IVF treatment and even delivered a healthy sickle cell anaemia free baby girl. So, the process of IVF could also be an option for such couples. The governments can intervene and provide some monetary help for such couples,” Dr Gunasheela tells South First.
Also, experts expressed concern over the terminology of “eradication”.
Meanwhile, Dr Bhat also says that there are several non-tribal sickle cell patients coming in with the disease. She suggests checking for sickle cell compulsorily during antenatal visits if they have to really “eradicate” this condition. She also suggests that screening only 0-40 years may also not be enough.
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