There’s new hope for sickle cell disease (SCD) patients and the government’s mission to eradicate the genetic blood disorder from the country by 2047 and screen 70 million people by next year. As per a recent development in the Central government’s National Sickle Cell Anaemia Elimination Mission (NSCAEM), the Indian Council of Medical Research (ICMR) is said to be in the final development stage of a new testing kit, which is set to be rolled out within six months.
What’s noteworthy is that these point of care (POC) test kits will be available for as little as Rs 50 per test. At present, these POC tests are available only at select facilities and cost at least Rs 350.
These testing kits will be used to determine whether a person is a potential carrier of the sickle cell gene, or is at risk of the genetic disorder, explains Dr Prabhakar Kedar, organising secretary of the ICMR-Centre of Research, Management and Control of Hemoglobinopathies (ICMR-CRMCH), which was inaugurated by PM Narendra Modi under the NSCAEM in December 2022.
Given that SCD is found mostly among the tribal populations of the country, awareness regarding the government’s mission, and the disease itself, is scarce. The government is hopeful that these testing kits, if made widely available, accessible and affordable to the population, will help in furthering awareness as well as screening efforts of the government.
According to Dr Kedar, the tests will be conducted by collecting blood samples obtained from finger pricks. When mixed with a ‘buffer solution’, they will be able to give results within minutes. “The solution is meant to detect different haemoglobin variants in the sample. After testing and evaluating 35 different POC tests, the success rate of each was estimated before approving them for mass manufacturing,” he adds.
High incidence
SCD is a genetic blood disorder which affects the shape of the red blood cells (RBC), interfering with the blood flow in the body. Rather than the disc-like flexible shape of the RBC, they assume a sickle-like structure. It is a group of inherited disorders that impact haemoglobin, which is the protein that carries oxygen in the blood. While there is no certain or curative treatment for this disorder, treatments like blood and bone marrow transfusions along with medications can help to manage symptoms and lifestyle.
The burden of sickle cell anaemia is very high for the Indian population – particularly in rural areas and for those belonging to the scheduled caste (SC) and scheduled tribe (ST) communities. Almost 67.8 million across the country, which is approximately 83% of the SCD population, are concentrated in the tribal regions. Approximately one in every 70 births is affected by the disease. By next year, the government aims to screen at least 70 million people for symptoms or the SCD gene.
As of the last week of July this year, over 60,353,940 individuals were screened by the health ministry, as per the NSCAEM dashboard, with more than 50% of the cases concentrated in states such as Madhya Pradesh, Maharashtra, Odisha, Jharkhand, and Chhattisgarh. Of the over 60 million people screened, 2,15,913 were found to have SCD, and 16,86,628 were found to have the sickle cell trait, as per data updated till July 26.
The government rolled out the NSCAEM in 2023, with the focus of the mission on 278 districts of 17 states where the incidence of sickle cell anaemia is highest in India, particularly Gujarat, Maharashtra, Rajasthan, Madhya Pradesh, Jharkhand, Chhattisgarh, West Bengal, Odisha, Tamil Nadu, Telangana, Andhra Pradesh, Karnataka, Assam, Uttar Pradesh, Kerala, Bihar and Uttarakhand.
India has the third highest incidence of sickle cell anemia in the world after Nigeria and the Republic of Congo, with 20 million Indians living with this disorder and 42,000 children being born with SCD every year, according to studies.
Government push
Due to a lull in the government’s screening and IEC (information, education and communication) efforts to address SCD during the pandemic, it was felt that a dedicated mission under the NHM would help further the cause. It all started after the Ministry of Health and Family Welfare (MoHFW) did work on hemoglobinopathies (group of inherited blood disorders) in 2016, with guidelines on prevention and management of hemoglobinopathies as well as funds for screening and management. It was relaunched as the NSCAEM in 2023.
The NHM’s push for SCD eradication is multifaceted. It looks at screening at an individual and household level, for those aged 18-40 years and are known to have or are at risk of carrying the sickle gene. Under the mission, mechanisms are to be established at community level for pre-marital and pre-conception screenings backed by genetic counselling services. Written into the guidelines of the mission is the Sickle Cell Genetic Status Card, which is issued to a person after screening, and displays their SCD status. This card helps to match SCD cards, before marriage or conception, to understand the risk of the genetic disorder for their offspring. Also, at the level of community, for all individuals detected or known as carriers or patients, extended family screenings are to be ensured as well, among other instructions.
Downloadable training materials are also available on the official NSCAEM website, such as guidelines for prevention and management of SCD, for medical, ASHA and community health officers and staff nurses, as well as general awareness and counselling modules.
With the MoHFW, along with the ICMR, the NIIH and other national research institutes, it is estimated that the awareness around sickle cell disease or sickle cell anemia will rise with a simultaneous decrease in incidence. The Ministry of Tribal Affairs considers SCD one of the main medical concerns for such communities in the country.
At the time of launch, then Union MoHFW Mansukh Mandavya said that the role of society is essential for the programme to be successful, “Sabka saath, sabka prayas can stop the spread of sickle cell disease,” he added.
More recently, the minister for tribal affairs in Madhya Pradesh, at an event held in New Delhi on the occasion of World Sickle Cell Day on June 19, also reiterated the government’s investment in the issue. Along with AIIMS Delhi, the ministry will undertake a drug development competition with a prize pool of Rs1-10 crore, the minister added.
