Last year, Prime Minister Narendra Modi launched the National Sickle Cell Anaemia Elimination Mission to eliminate sickle cell disease as a public health problem by 2047, from Shahdol, Madhya Pradesh. Mr. Modi has seen this debilitating condition from close quarters during his term as Chief Minister of Gujarat, where sickle cell disease is a major public health concern. In this article, we highlight the many opportunities to build on this momentum.
Challenges in India
With over a million people affected with sickle cell disease, India bears the world’s second largest burden of this condition. A majority of the patients are concentrated in the tribal belt running across Odisha, Jharkhand, Chhattisgarh, Madhya Pradesh, and Maharashtra.
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Sickle cell disease is caused by a genetic abnormality: if both parents carry the sickle cell trait, the child has significant chances of being born with the disease. While healthy individuals have disc-shaped red blood cells, those with sickle cell disease have red blood cells that take on a crescent or sickle-like shape. The lifespan of these patients is significantly shortened (to about 40 years) and their quality of life is curtailed due to the range of health complications caused by sickle cells, including sickle cell anaemia, recurrent infections, pain, swelling, and damage to vital organs. In addition to health issues, patients also suffer from the social stigma that is attached to this disease. They can sometimes be deemed “genetically inferior” and ostracised. Some of them are told that this disease is “God’s curse”. In some areas, the condition is attributed to “black magic”. Due to the hereditary nature of sickle cell disease, patients also face diminished marital and social prospects.
With the launch of the Mission in 2023, the Central government’s attention to the disease is high. Among other efforts, a large-scale screening programme is underway nationwide. Hydroxyurea, a vital medicine for treating sickle cell disease, been included in the essential medicines list; this has increased access to it. While measures such as these will help detect and treat sickle cell disease, there are still many challenges.
Our estimates suggest that only 18% of the people affected by sickle cell disease in India are receiving consistent treatment. This is because patients drop out at all stages of treatment: while getting screened for the disease, while getting diagnosed, while starting treatment, and while trying to adhere to treatment.
The largest drops occur at the diagnosis and treatment adherence stages. Getting a correct diagnosis is a challenge as many people hesitate to seek support due to the stigma associated with the condition. They often consult traditional healers, who frequently misdiagnose the condition. While the public system has a stronger diagnostic capacity for sickle cell disease, there is a historic mistrust of it in tribal areas. As a result, few patients get tested.
The second big drop is around treatment adherence. No permanent cure is available for sickle cell disease. Ongoing research in gene therapy is promising, but will be unaffordable for most of the affected population even when it becomes available. At present, relatively inexpensive drugs such as hydroxyurea are effective for most patients if administered with the right dosage and frequency. However, there is seldom a regular and convenient supply of medicines, along with adherence support (such as that provided to TB patients). Key medicines sometimes go out of stock. Patients have also said that they need to travel long distances to pick up their medicines. In a State in central India, a healthcare professional noted that patients travel for more than 200 kilometres to seek treatment. Further, coverage of several vaccinations, which reduce the frequency of infections and improve the quality of life for patients, remains poor.
The way ahead
The Mission can build on its initial successes by tackling some of these challenges. First, it is important to reduce the stigma related to the disease and build trust in public health institutions. Awareness should be raised through targeted media campaigns to bust specific myths (which vary by region and tribe). For this, India could draw from its experience in tackling polio and HIV. With reduced stigma, the chances of sickle cell trait carriers concealing their carrier status may also reduce, which would in turn lead to fewer women giving birth to children with the condition.
Second, given that cases are often missed and diagnosis delayed, there could be increasing screening for newborns. This strategy is low-cost with a high pay-off and would especially be effective in areas where the condition is endemic.
Third, drugs as well as adherence support must be available close to patients, in the nearest health and wellness centres. For complications, interdisciplinary centres of excellence at the district/division levels should be made operational.
Fourth, ensuring that all known patients receive approved vaccines will be crucial; this may require catch-up vaccination programmes.
Fifth, health in tribal areas should be operationally strengthened by factoring in conditions unique to these areas. Healthcare should also be adequately funded.
Finally, research should be conducted to better understand the disease and its pathways in India, and to develop new treatments. Philanthropists and members of civil society must play a catalytic role, and work with the Central and State governments.
Dhananjay Vaidyanathan Rohini is partner, Alstonia Impact, a global public health consulting firm; Gautam Dongre is secretary of National Alliance of Sickle Cell Organisations and board member of Global Alliance of Sickle Cell Disease Organisations.
Japneet Kaur (Head of Research), Kanishk Singhal (Associate), and Prisha Saxena (Senior Analyst) from Alstonia Impact contributed to the article.
Published - September 12, 2024 03:36 pm IST
