Stigma, apathy, fatalism: The battle against sickle cell anaemia | Latest News India - Hindustan Times

Stigma, apathy, fatalism: The battle against sickle cell anaemia

By, , Sihawa (chhattisgarh)/ Bhopal
Aug 29, 2023 01:21 AM IST

Sickle cell disease (SCD) is a blood disorder where the red blood cells, usually disc-shaped and flexible enough to travel through blood vessels.

Chandrika Ganesh, 25, is always tired. And in pain. The kind of pain, she says, that makes a human being want to curl up and die. It begins in one joint, then spreads like a wildfire through her body. For a while, she hoped against hope, and told herself it was nothing. She was pregnant when the pain first arrived. Perhaps it was a mother’s rite of passage, she thought.

On July 1, PM Modi launched the National Sickle Cell Anaemia Elimination Mission (NSCEM) in Shahdol in Madhya Pradesh. (file) PREMIUM
On July 1, PM Modi launched the National Sickle Cell Anaemia Elimination Mission (NSCEM) in Shahdol in Madhya Pradesh. (file)

Also Read | Impact of sickle cell disease on pregnancy and maternal health

Tucked away in the buffer zone of the Chhattisgarh’s Udanti Tiger Reserve, the Gond tribal village of Machki has always faced a host of problems. The people are poor, the closest hospital is miles away, the roads are ramshackle and there are no jobs for the young, who are forced into the life of subsistence their parents eked out. But Ganesh is living evidence of another, quieter, but ubiquitous crisis that lurks behind the thatched mud walls that dot the green of the forest.

Just before she was about to deliver her daughter, in her last scheduled medical check at a decrepit health centre nine kilometres away, Ganesh was finally told what she had always feared. That she was infected with sickle cell anaemia. The news did not shake her or the village. At least seven other women have it. More precisely, it is publicly known that seven other women have it. How many actually do is unknown.

Two months after she delivered the child, she stopped the prescribed medication. The folic acid tablets were difficult to procure, but more importantly, there was a complete lack of faith in the medicine. Nobody else in the village had ever been diagnosed with sickle cell disease, and then lived a life free of the pain. “What will the medicines even do? I stopped them four months ago, around the time I stopped working in the fields with my family because I would just collapse,” Ganesh said.

Also Read | World Sickle Cell Awareness Day 2023: Date, history, significance and celebration

Sickle cell disease (SCD) is a blood disorder where the red blood cells, usually disc-shaped and flexible enough to travel through blood vessels, turn into a shape that vaguely resembles a sickle, or a crescent. These cells are less malleable, unable to move as easily, and block blood flow to the rest of the body. This essentially means sharp bursts of pain, increased weakness, susceptibility to a stroke or debilitating infections and a reduced life expectancy.

On July 1, Prime Minister Narendra Modi launched the National Sickle Cell Anaemia Elimination Mission (NSCEM) in Shahdol in Madhya Pradesh, and said that the union government is committed to eliminating the disease before India celebrates its 100th year of Independence 2047. Under the mission, there would be universal screening for 70 million people in the age groups of 10 to 40 years, in 278 affected districts, he promised.

But the treatment of sickle cell disease has for many decades been plagued by problems. For one, it is most prevalent in people from tribal communities; several that live in areas that are still remote. Then, because it is genetic, several mitigation strategies rely on identification of people post screening, and then attempts to prevent marriage between infected or carrying individuals, a process complicated by social norms and hierarchies in India.

The union government is now pushing to solve the problem and crucially, there is likely a political underpinning to the government’s initiatives. There are five states that go to the assembly elections in late 2023. In all five, the percentage of scheduled tribes is higher than the national average of 8.9 %. In Telangana, they constitute 9.3 %; in Rajasthan 13.5%; in Madhya Pradesh 21.1%; in Chhattisgarh 30.6% and in Mizoram 94.4%.

Sickle-cell anemia and tribal populations

While there is little clear official data on the number of people infected with sickle cell disease, the Ministry of Tribal Affairs admits that it is widespread among India’s tribal population, estimating the prevalence at about one among every 86 births in the community. Along with the elimination programme the Prime Minister announced, the ministry has also launched the Sickle Cell Disease Support Corner, a portal that collates all available information related to SCD in tribal areas, to bridge the gap between patients and health care services in tribal areas.

On ground, officials in states such as Chhattisgarh and Madhya Pradesh said the reason SCD is prevalent among tribal communities is a lack of awareness, but also the well-established connection between the disease and malaria. The American Centre for Disease Control, the US public health agency, says that the sickle cell gene is caused by a single amino acid mutation in the “beta chain of the hemoglobin gene”. Conversely, individuals who are carriers for the sickle cell disease - with one sickle gene and one normal hemoglobin gene - have a “protective advantage against malaria”. “As a result, the frequency of sickle cell carriers is high in malaria-endemic areas,” the CDC says.

In turn, the link between India’s tribal areas and prevalence of malaria is clear as well. State level analysis carried out by scientists of the National Institute for Research in Tribal Health and the Directorate of National Vector Borne Disease Programme in the Indian Journal of Medical Research paper “Malaria situation in India with special reference to tribal areas” revealed that 10 states and union territories where the tribal population is 30% or higher, account for 14% of the total malaria cases and 29% of malaria deaths. District level analysis also shows that districts where the tribal population is 30% or higher, contribute 46% of the total malaria cases, and 47% of the malarial deaths in the country.

Jay Prakash Maurya, Director, Health Services Chhattisgarh said, “Tribal areas are endemic to malaria and thus, as an evolutionary trait, people’s red blood cells became sickle shaped. We are making efforts to screen and identify those with the sickle cell disease and the sickle cell trait, getting them on treatment and giving them counselling. At least some with the disease and carriers have been convinced not to marry those that are similarly diseased or are carriers. Apart from this, a CVS (Chorionic Villus Sampling) test of the unborn fetus has been included in Ayushman Bharat package which can determine whether the child will have sickle cell disease. There is however, only one centre in Raipur that offers it thus far.”

Ravi Mittal, the district collector of Jashpur, a tribal district in north Chhattisgarh, and a doctor with an MBBS degree, said that there must be a mandatory test before marriage in high risk communities. “The government must provide genetic cards to those already diagnosed so they can be matched before marriage. There clearly needs to be continuous monitoring of testing and treatment at the block level.”

The sickle cell cards

The Bhagoria festival is always a riot of colour. Celebrated by tribals across tracts of central India such as Madhya Pradesh and Maharashtra, the festival coincides with the end of the harvest in March, with thousands from the community coming together to sing, dance, and make merry.

The festival has another, life defining, objective.

It is, for the youth, a meeting ground for marriage; where young men and women look for the person they will spend the rest of their lives with. In the districts of Jhabua and Alirajpur in Madhya Pradesh this year however, there was a new staple to the festivities. A small card, all of three centimetres tall and five centimetres wide, peeking out from the pockets of those that carried them.

Each card has four small boxes, built to be easily understandable even to the unlettered. If all the boxes are yellow; it means the person has sickle cell disease. If two of four are yellow; it means the person is a carrier. And if the boxes are all empty, it means the person is free of the dreaded disease. Reverse the card, and there is an explanation of what each of the three choices mean, the chances of developing SCD and the possibility of SCD in their progeny.

In a pilot project launched in 2021, the Madhya Pradesh government tested 1.5 million tribal people in 89 tribal blocks in Alirajpur and Jhabua under the “haemoglobinopathy mission”. Blood tests revealed that 3% carried the disease and 0.3% were infected. As the next logical step, the district administration printed 300,000 cards that would carry this information, said Sudam Khade, commissioner, Madhya Pradesh health department.

In these districts however, there are mixed responses to the cards. A 19-year-old Baledi resident, who is a sickle cell carrier said, “In our tradition, we choose who we will marry during Bhagoria. But the next time, instead of paying attention on who we like, this will be the prime focus. I will carry the card if everyone else is, but this is not how a life partner can be chosen.”

Baledi sarpanch Rekha Ramesh said that those that have been made aware of the consequences may still follow instructions but it is difficult to assume that everyone would. “Many are still not highly educated and choose their partners often when they are at work like construction sites. Who will check the cards?”

There is also the obvious worry with stigma, with parents of those with the disease, or carriers, worried about the effects of identification. A resident of Macchaliya village of Jhabua said his daughter is 14 years old and a carrier. “I do not know how we will inform others when we have to look for a husband for her. How will we explain she has no disease, but her children might? I am afraid of the impact it may have on her.”

Rajendra Singh Gond, 32, from the Jaitpur region of Shahdol however said, “I have the disease and have so much hardship in my life. All I can say is that I do not wish it on anyone, and any move which lessens the chance must be welcomed. This card also allows me free medicines and treatment.”

The politics

On July 1, Prime Minister Modi said that the government was committed to eliminating the disease by 2047: “The National Sickle Cell Anaemia Elimination Mission takes a comprehensive approach towards combating sickle cell disease as the impact of a disease is not felt by the patient alone, but by the whole family.” Health minister Mansukh Mandaviya brought up the cards and said that people from high burden states must match these documents before marriage to ensure that the disease is not transferred to the next generation.

A week later, the underlying politics was reiterated and in Chhattisgarh, that goes to the polls in late 2023, Modi laid blame at the door of the Congress and said that they had taken no note of the spread of the disease. The Congress is in power in the state in Chhattisgarh. “Our government will free tribal people from sickle cell anaemia by opening blood banks, enhancing screening and bone marrow transplant services among patients,” Modi said.

State BJP leaders said that the mission will dent the Congress in tribal dominated areas, and give them a leg up. “The mission will definitely give us an edge in the upcoming elections because this disease is found most prevalent in tribals, and to some extent among the OBCs. But for Prime Minister Modi, it is a mission to cure people because he had started work like this when he was Chief Minister in Gujarat, more than 15 years ago,” said OP Chaudhary, a senior Chhattisgarh BJP leader.

Lakheshwar Baghel, Congress MLA from Bastar however said, “I don’t think that PM Modi’s attempt to woo the tribal voters in Chhattisgarh by launching this will succeed. The Congress has worked extensively on health, economy and employment, and we are confident they are with us.”

Political experts said that it was clear that the BJP was trying to create the narrative that very little has been done for tribals since Independence. “The reference in his political speech on July 7 was a salvo against the Congress’s tribal outreach. It remains to be seen however how effective this will be because this is an old issue and the BJP was in power for 15 years (in the state) too,” said Sudiep Srivastava, a Chhattisgarh based political analyst.

Vinesh Jha, who has worked on tribal issues in Madhya Pradesh for years said that when people are asked about the sickle cell cards, the follow up question is often “kuch milega kya”(will we get something). “The real need is for proper treatment and infrastructure and that has yet to be developed.”

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    State Correspondent for Chhattisgarh. Reports Maoism, Politics, Mining and important developments from the state. Covered all sorts of extremism in Central India. Reported from Madhya Pradesh for eight years.


    She is a senior reporter based at Bhopal. She covers higher education, social issues, youth affairs, woman and child development related issues, sports and business & industries.

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