OPINION: Achieving equity in blood access for sickle cell patients

India has the second highest burden in the world of sickle cell anaemia

Sickle cell disease elimination Representative Image

India’s decision last year to take on sickle cell anaemia in mission mode showed the commitment of the government to deal with diseases that largely affect marginalised communities in remote locations of the country. As the programme unfolds, it is important for the government of India to understand and prepare for the demand for safe and accessible blood that effective treatment of sickle cell anaemia will require.

Recognised by the World Health Organization (WHO) as an essential medicine, blood plays a vital role in a vast array of medical situations, from trauma care to the management of chronic diseases. For India, which has the second highest burden in the world of sickle cell anaemia, identifying cases through population-level screening will require the health system to be prepared to undertake treatment of the identified cases. This would include meeting the significantly higher demand for blood.

A beacon of hope: The elimination mission

Estimates suggest that the number of predicted Sickle Cell Disease (SCD) births is approximately 42,000 newborns annually where the prevalence among tribal populations is higher varying from 1% to 40% of the overall populace. These communities often inhabit regions with scarce resources. To tackle the high prevalence, the Government of India’s Sickle Cell Anemia Elimination Mission, launched in July 2023, aims to prioritise universal screening and reach 7 crore individuals across 278 tribal districts. An increase in the number of people screened will lead to a larger proportion of the population in need of appropriate treatment measures. However, a critical challenge threatens improved treatment outcomes: chronic blood shortage.

The Achilles' Heel: Blood shortage and treatment challenges

Individuals with SCD will rely heavily on blood transfusions, specifically red blood cell exchange (RBCX), to replenish healthy red blood cells and prevent complications. Unfortunately, the reality in high-burden, often remote SCD regions is grim. Limited blood supply restricts access to this life-saving treatment, even for diagnosed patients. The current national shortage of 1 million units against a requirement of 14.6 million units can exacerbate as more and more patients are identified.

Only by ensuring equitable access to blood transfusions can we truly alleviate the burden of SCD and offer patients the treatment they desperately need, which is ethically our duty to give them access to once they have been diagnosed.

Access to effective treatment of sickle cell patients

To ensure patients have access to effective treatment, the implementation of the hub-and-spoke blood collection model in states would be instrumental in achieving the goal of eliminating SCA by 2047. This model involves a centralised system where smaller blood banks, referred to as spokes, are connected to larger ones, known as hubs. By centralising blood collection and distribution, this model allows for real-time updates on blood availability, minimising wastage and enhancing safety. Equipped with storage and processing facilities and skilled personnel, hubs ensure efficient blood resource management. As the health ministry works on establishing a central registry for all screened individuals, this model can be complemented by such initiatives, strengthening the nation's efforts to combat SCA and ensure equitable healthcare access.

Beyond logistical hurdles, a critical cultural barrier impedes blood accessibility in SCD-prone tribal areas: entrenched myths and misinformation. Despite government efforts, many remain hesitant to donate blood due to anxieties about infection, immune system depletion, or even religious beliefs. To bridge this gap, successful models exist, like Meghalaya's transformative behavioural change campaign where the Government of Meghalaya employed a multi-pronged approach, utilising targeted social media campaigns to reach the grassroots level; leveraging village and religious leaders; and deploying innovative tools like multilingual comic books.

By emphasising the life-saving impact of regular blood donation, the campaigns dispelled myths and cultivated a more informed and willing donor pool in Meghalaya. This successful model can be replicated in other SCD-prone regions to overcome cultural barriers and ensure that blood reaches those who need it most.

Call to action

The fight against SCD in India demands a united front. While the Sickle Cell Anaemia Elimination Mission offers a promising start, a critical gap in blood availability threatens progress. To bridge this gap and ensure equitable access to treatment, a multi-pronged approach is essential.

The hub-and-spoke model for blood collection needs to be leveraged for remote areas with high SCD prevalence. Dispelling myths surrounding blood donation through targeted awareness campaigns and fostering a culture of voluntary donation are equally crucial. Policy support must incentivize and streamline blood donation processes, while community engagement initiatives can encourage participation from diverse populations.

Prioritising blood access represents a critical step towards achieving health equity for all in India. Only through collective action can we build a future where India is free from the burden of SCD, with blood, the silent hero, readily available as a cornerstone of a robust healthcare system for all.

The author is the Senior Vice President and General Manager, Global Blood Solutions, Terumo Blood and Cell Technologies.

The opinions expressed in this article are those of the author and do not purport to reflect the opinions or views of THE WEEK.


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