Health / Mon, 02 Nov 2026 TheWire.in

Educating People on Sickle Cell Disease

A critical component of the Indian programme is the deployment of colour-coded “Sickle Cell Status” identity cards to identify carriers among the tribal population. A critical component of the Indian programme is the deployment of colour-coded “Sickle Cell Status” identity cards to identify carriers among the tribal population. Sickle cell disease (SCD) is the world’s most famous genetic mutation. A critical component of the Indian program is the deployment of color-coded “Sickle Cell Status” identity cards to identify carriers among the tribal population. Excerpted from Curved Air: A Biography of Sickle Cell Anemia and the Quest to Cure the First Molecular Disease by Kevin Davies, published by The Belknap Press of Harvard University Press.

A critical component of the Indian programme is the deployment of colour-coded “Sickle Cell Status” identity cards to identify carriers among the tribal population.

Sickle cell disease (SCD) is the world’s most famous genetic mutation. Of the 7.75 million people affected around the world, about 15 percent live in India. In this excerpt from my book, Curved Air: A Biography of Sickle Cell Anemia and the Quest to Cure the First Molecular Disease, I present some of the exciting progress (funded by the Indian government) to educate and screen people at risk for carrying the sickle cell gene with the goal of lowering the incidence of affected newborns.

This programme is just one of the many promising areas of research being conducted in India, including new approaches to gene therapy, that will eventually reduce the incidence and impact of this debilitating genetic disease in India and around the world.

In 1952, two research groups reported the presence of SCD in India for the first time. Hermann Lehmann and Marie Cutbush, from St. Bartholomew’s Hospital in London, reported a high incidence of sickle cell trait in three aboriginal communities among the tribal populations (or Scheduled Tribes) living in the Nilgiri Hills in southern India. Meanwhile, K. J. Dunlop and U. Mazumder reported three children of migrant tea garden laborers in Upper Assam as the first documented cases of SCD.

“Whether there is a possibility of these tribes having had an admixture of negro blood in the dim past or even stemming from common stock, we are unable to say,” the authors wrote, “but it would be of interest to know if this is so.”

India has overtaken China as the most populous country in the world, on pace to surpass 1.5 billion people by 2030. The prevalence of SCD is highest among the tribal populations, the Adivasi, who account for some 8 percent of the Indian population. An Indian newspaper in 2013 painted a bleak picture of the plight of SCD patients in the central state of Madhya Pradesh.

“Tribals in Kundam...call it a black demon, one who strikes select families and ensures an early and agonizing death by sucking its victims white,” the report began. “For once, medical experts couldn’t agree more with this homespun wisdom that aptly describes sickle cell.”

The “victims” were unable to afford the cost of a blood transfusion for a sick child. A retired pediatrician condemned the apathy of the state government and lack of carrier testing while advocating for greater education and a move to limit or prohibit consanguineous marriages. An elderly priest criticized tribals for putting their faith in sorcery, although he claimed to have treated more than twenty thousand patients with his own magic potion – a commercially available ayurvedic concoction of aloe vera and herbs.

What a difference a decade makes. In July 2023, Indian Prime Minister Narendra Modi launched the National Sickle Cell Anaemia Elimination Mission, which has a twenty-five-year goal to eradicate the disease by 2047—the centenary of India’s independence from the British.

“This is a resolution to make the lives of the tribal brothers and sisters of our country safe,” Modi told an enthusiastic crowd at the launch event. The goal is “to save the lives of 2.5 lakh [250,000] children and their family members” who fall victim to SCD every year.

Prior to being elected prime minister, Modi was the chief minister of Gujarat (the fifth-largest Indian state), where he launched a statewide SCD screening program. Modi has called SCD “more painful and dangerous than cancer.” In one of his first international trips after becoming premier, Modi visited Kyoto, where he met with the Japanese Nobel laureate and stem cell expert Shinya Yamanaka to discuss potential therapeutic approaches for SCD.

Perhaps something was lost in translation, but eradicating any genetic disease, let alone one that has spread primarily in tribal populations made up of tens of millions of people, is a utopian fantasy. Nevertheless, the Modi administration means business. The national initiative was valued at an impressive 900 billion Indian rupees (about $11 billion at the time) in the first year alone.

The program focused on a test-track-treat-counsel program, targeting children and adults under the age of forty. It began with tribal populations in seventeen high-prevalence states, making up a belt stretched across the country, including Madhya Pradesh, Gujarat, and Odisha. Indian authorities identified more than a hundred thousand cases of SCD among the first nineteen million people screened. The prevalence of SCD may be as high as 2.5 percent of the local population, with the frequency of the trait as high as 40 percent.

The program also offers a range of disease management tools. Hydroxyurea, folic acid, and penicillin are free for children under five years of age. In 2024, India was operating dozens of clinical trials for SCD, including some promising drugs to boost the levels of HbF levels and herbal medicines.

A critical component of the Indian program is the deployment of color-coded “Sickle Cell Status” identity cards to identify carriers among the tribal population. The cards of prospective couples are compared before marriage to assess their likelihood of having affected children—and to disqualify a union if necessary.

The ID cards were the brainchild of Nisanth Nambison, a homeopathy doctor by training, and his wife and research partner, Smita. After meeting SCD patients in Chhindwara, a city in Madhya Pradesh, Nambison was perplexed by how a preventable genetic disease was “allowed to pass into the next generation just for want of awareness.”

Children were dying because of lack of treatment, compounded by the lack of education among local doctors, who might, for example, prescribe iron supplements if they believed they were treating simple anemia.

“This was very painful to us,” Nambison told me. “We had a very deep desire to bring change in the lives of these poor people.”³⁴

In 2018, with local government funding, Nambison’s team performed “doorstep screening” of almost twenty-five thousand people. Seeing that many individuals were nervous about giving even a small amount of blood for testing, and about having to travel to a remote clinic, the Nambisons developed a cheaper point-of-care test that required just a finger prick.

After documenting an SCD incidence of 12 to 13 percent in the tribal communities, Nambison was promoted to the state convenor of haemoglobinopathy in Madhya Pradesh. Another challenge was that, even when someone tested positive, they would seldom consult a marriage counselor. Aside from the stigma, most could not afford to take time off work.

Nambison recalled that Gujarat and other states had deployed a basic form of identity cards – yellow for sickle cell patients, white for healthy people, and a yellow/white combination for carriers. But aside from causing discrimination for patients, Nambison also saw missed opportunities for couples counseling.

Nambison created a simple identification card dubbed the GIPCI (Genetic Inheritance Prediction Counselling Identification) card, which helps couples identify compatible matches and understand the risks of having a child with SCD. The card looks like a traditional driver’s license. In the lower left-hand corner, yellow and white squares designate the presence or absence of the SCD mutation.

Potential couples overlay their cards, lining up a column of punch holes on the right of the card; the resulting pattern reveals the likelihood of having a child with SCD. On the back of the card, a key explains the odds of the couple’s having an affected child and the recommended course of action: “Okay” if potential children are destined to be healthy or have sickle cell trait. If both members of the couple have the trait (meaning a one-in-four chance of having a child with SCD), the advice is “rethink.” If the outcome is going to be a 50 percent chance or worse of having an affected child, the recommendation is “not advisable.”

The results can be scanned onto a mobile app and uploaded into a central database.

The Indian government instructed all seventeen Indian state governments to distribute GIPCI cards to seventy million people in the tribal populations. I asked Nambison if SCD elimination by 2047 was realistically attainable.

“Even if it is an unreasonable goal, it has created pressure on the people in the healthcare system,” Nambison replied. Several countries have essentially achieved this goal for thalassemia, he notes. “There is no harm in being ambitious. Only time will tell whether this can be achieved.”

Kevin Davies is the Executive Editor of the CRISPR Journal and the founding editor of Nature Genetics.

Excerpted from Curved Air: A Biography of Sickle Cell Anemia and the Quest to Cure the First Molecular Disease by Kevin Davies, published by The Belknap Press of Harvard University Press.

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