Karnataka identifies 8 districts to start screening for sickle cell anaemia; state's efforts appreciated, but doctors say more work needed.
Karnataka identifies 8 districts to start screening for Sickle Cell Disease, state's efforts appreciated but researcher warns mortality rates are much higher and needs more work (Wikimedia Commons)
In a startling revelation, recent analysis of global health data spanning 21 years has uncovered a harrowing truth: The mortality rate of sickle cell disease is not just higher, but a staggering 11 times higher than previously estimated.
However, researchers and officials closely engaged with indigenous communities and sickle cell anemia patients in Karnataka caution that these findings, alarming as they are, only scratch the surface.
They believe that the actual numbers could be far more dire than what has been published.
By combining prevalence and birth incidence data with mortality data, researchers estimated that the total mortality burden of sickle cell in 2021 was 373,000 deaths globally.
This figure is significantly higher than the previously reported 34,600 cause-specific deaths.
The highest fatality rates were observed in South Asia, including India (67 times higher), and sub-Saharan Africa (nine times higher).
The research holds immense significance for India, particularly Karnataka, where the prevalence of this debilitating disease is alarmingly high.
The stark reality underscores the need for heightened awareness, early detection, and improved treatment options, as sickle cell disease continues to pose a formidable public health challenge in the country.
Dr Deepa Bhat, Genetic Counselor, JSS Medical College and Hospital in Mysuru, has been working closely with the sickle cell disease community, especially the indigenous communities of Mysuru and Chamarajanagar districts.
She told South First: “A multicentric global study collecting data from the last 21 years is something wonderful and this study shows that sickle cell disease is getting some importance.”
Researchers analysing global health data from 2002 to 2021 discovered that deaths related to sickle cell disease are 11 times higher than previously indicated mortality data.
The Global Burden of Disease 2021 study from researchers across the world, in coordination with the Institute of Health Metrics and Evaluation (IHME) at the University of Washington’s School of Medicine, was published in The Lancet Hematology journal.
The study found that the mortality burden of the disease has been high, especially in South Asia and sub-Saharan Africa.
The study also identified the disease as being the 12th leading cause of death globally among children under the age of five years. In 2021, they found several babies born with sickle cell disease.
The study urges the implementation of universal newborn screening, case monitoring through public registries, and early intervention treatments to alleviate the suffering of approximately eight million people living with sickle cell disease worldwide.
Doctors call it the “Silent Threat”. Sickle cell anaemia is an inherited form of anaemia characterised by abnormally shaped red blood cells.
“It is often under-diagnosed, making it difficult to fully recognise it’s contribution to mortality,” said Dr Deepa Bhat.
Doctors explain that the disease increases the risk of infection and death from various complications such as stroke, heart problems, kidney problems, and pregnancy complications.
India has a considerable burden of sickle cell anaemia, with an estimated 25-30 million individuals carrying the sickle cell trait and over 150,000 children born with the disease annually.
“Understanding the true mortality burden of the disease is crucial for healthcare planning and resource allocation,” explained Dr Bhat.
Karnataka identifies 8 districts to start screening for Sickle Cell Disease, state’s efforts appreciated but researcher warns mortality rates are much higher and needs more work
She explained that even in Karnataka, as in most of the states, the disease is often under-diagnosed or misdiagnosed, leading to delayed or inadequate treatment.
This study highlights the need for increased awareness among health care providers, policy makers and the general public about the severity of the disease.
The study also reveals that South Asia, including India, experiences a disproportionately high fatality rate from sickle cell disease compared to other regions.
“We are worse than African regions, too. So it emphasises the urgent need for targeted interventions and specialised healthcare services in these area to address the specific challenges faced by patients with sickle cell disease,” Dr Bhat added.
Appreciating the study and it’s representation of global numbers, Dr Bhat, as a genetic counsellor who has been closely working with the community for five years, said: “This is a genetic disease and is affecting the indigenous communities. So it is not just about hospital-based data. They have included published data from Maharashtra, etc, but my observation, based on what I see in Karnataka, hospital-based data would be underestimating the actual burden.”
She noted that those interviewed for the study were doctors within the hospital system and data from hospitals.
“I would say majority of the doctors outside the hospital system are not even aware how to differentiate between anaemia and sickle cell anaemia. In tertiary care, I wonder how many of them have even reached the stage of taking treatment. In my own experience, a very minuscule numbers reach tertiary care,” she said.
Dr Bhat, who began work on sickle cell disease as part of the ICMR National Task Force on Sickle Cell disease, said there are a lot of socio-cultural issues to be dealt with. For instance, “Our own studies show that treatment-seeking behaviour itself is not there (among the indigenous communities).”
She also said the study generalises the data for the country. Having worked in various states, Dr Deepa said, the disease manifests itself differently in different regions.
“Assam to Karnataka and Gujarat to Orissa, the same sickle cell disease — but severity is very different. Presentation is very different too,” she pointed out.
In the last budget, Finance Minister Nirmala Sitharaman announced a mission to eliminate sickle cell anaemia by 2047.
However, doctors working in the field and researchers working closely with vulnerable communities say that though the move is to be lauded, it is not possible to eliminate the disease by 2047
“It is a good thing that the National Sickle Cell Mission has been rolled out. We have to take this up as early as possible because when compared to African countries we are second-leading in sickle cell disease, but they are far ahead. The state health sector and the national health sector should work in tandem,” said Dr Bhat.
And the alignment should ensure that the mission reaches out to the needy. The pace at which this is picking should be increased, she added.
Dr Prashanth NS is a medical practitioner working with the Soliga tribes — one of the communities with the highest number of people with sickle cell anaemia — in Chamarajanagar district’s Vivekananda Girijana Arogya Kendra.
He told South First: “While this paper shows the need for greater policy and programmatic attention to addressing sickle cell disease, we are still in the early days in many parts of India in terms of understanding, disease, burden, morbidity, and mortality.”
He felt the mission for sickle cell disease is very welcome but “I believe the full picture of sickle cell disease in India, particularly among many socially-disadvantaged adivasi communities, is yet to be fully known.”
Dr Deepa Bhat, who is working with the state government and also doing research in Chamarajanagar and Mysuru districts on sickle cell anaemia among adivasi communities, said Karnataka has identified eight districts which have highest number of sickle cell anaemia patients.
“Mysuru, Chamarajnagar, Coorg, Udupi, Chickmangalur, North Karnataka, Hassan, and Mangaluru districts have been identified where the screening for the disease has begun and interventions are starting. Rigorous meetings and implementations have been started in these districts; their data is being entered into the national portal,” she said.
Meanwhile, Dr Prashanth lauded the government of Karnataka‘s recent efforts at creating an expert committee, choosing to screen members of the adivasi community, and making available hydroxyurea at Primary Health Centres serving these communities.
The target set for screenings in the first year in these eight districts is 1.08 lakh.
In Chamarajanagar district, the Institute of Public Health in collaboration with the Department of Health and Family Welfare, and several of the community-based organisations are planning a Sickle Cell Day celebration, involving sickle cell patients and adivasi community leaders .
“We need to build greater capacity within our health systems to detect sickle cell disease early and provide the full range of treatment,” he explained.
It is not just tribal communities that are reflecting more sickle cell disease cases. Even non-tribal communities are showing increased prevalence.
“We regularly have non-tribal communities coming in with sickle cell anaemia. Especially from districts like Bellary, Chitradurga, the North Karnataka districts. Though the major focus has been on the tribal community, the state government should be wary of the fact that even non-tribal are coming with sickle cell anaemia,” said Dr Bhat.
She added that, in her experience, the severity of the disease is greater in non-tribals than in tribals.
When individuals from communities with a high prevalence of sickle cell disease marry within their community, the chance of both partners being carriers increases, and therefore the risk of having a child with sickle cell anaemia also increases.
Dr Bhat said to reduce the risk of having children with sickle cell anaemia, individuals from communities with a high prevalence of the disease are encouraged to undergo carrier screening before marriage or pregnancy.
“Until they have symptoms they do not come to the hospital. Unfortunately, repeated infections, and repeated joint pains would be treated with painkillers or like any other normal condition, and they very rarely get tested for sickle cell anaemia. Recently, we have had such cases,” she said.
Keeping this challenge in mind, the state government should ensure screening happen in people before pregnancy to know whether they are a carriers.
This should be accepted and done in the general population, but to begin with, Dr Bhat said, “we could start with the vulnerable population like the adivasi population and then extend the screening to other communities”.
If in five years “we could know the exact number of sickle cell anaemia patients in the adivasi communities, this itself will give us an insight into what should be done next”, she added
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