Dr Shuchin Bajaj, Director, Ujala Cygnus Group of Hospitals and Elmer Aluge, President of the Sickle Cell Aid Foundation in Nigeria highlights that one of the biggest problems India faces in addressing Sickle Cell Disease (SCD) is a lack of awareness and education about the disease. Despite the high incidence of the disease in the country, many people are still unaware of the condition and its consequences. As a result, many individuals do not seek medical help until the disease has affected vital organs
The finance minister’s February 1 budget announcement launching a drive to eradicate Sickle Cell Anemia by 2047, the 100th anniversary of Indian Independence, is a welcome step toward eliminating a little-known killer. But to get there, India must learn from Nigeria.
Sickle cell anemia, more commonly known as Sickle Cell Disease (SCD), is a genetic blood disorder that affects millions of people worldwide with its largest prevalence in sub-Saharan Africa and a significant portion of the population in India. The disease is characterised by the abnormal formation of haemoglobin in red blood cells, which results in misshapen and sickle-shaped cells that can clog blood vessels and restrict the flow of oxygen to various vital organs and tissues in the body, making it a painful and incapacitating condition for sufferers.
In India, SCD is particularly prevalent in certain communities, such as the tribal populations in central and eastern India, and it is estimated that more than 10 million Indians are affected by the disease[1]. However, despite its high prevalence, SCD remains largely underdiagnosed and undertreated in India, which has contributed to significant health problems for affected individuals and families.
One of the biggest problems India faces in addressing SCD is a lack of awareness and education about the disease. Despite the high incidence of the disease in the country, many people are still unaware of the condition and its consequences. As a result, many individuals do not seek medical help until the disease has affected vital organs.
Another issue is the shortage of medical facilities and trained personnel equipped to diagnose and treat SCD and the lack of access to affordable and effective treatments. While there are some treatments available for the disease, including blood exchange/transfusions, bone marrow transplants, gene therapy, and hydroxyurea therapy, these treatments are often costly, not widely available, and complicated in many parts of the country. In rural areas, access to medical care is limited, and many people are forced to rely on traditional healers who are not equipped to provide the specialized care required for this condition. Furthermore, the cost of treatment is often prohibitively high, making it difficult for individuals from low to middle -income backgrounds to access the care they need. As a result, many people with sickle cell disease are unable to access the care they need to manage their condition and maintain quality health.
To address these challenges, India must take a multi-pronged approach that includes increasing awareness, improving access to medical care, and investing in research and development of treatments for SCD. Screening 70 million individuals from the age of 0-40 years, as announced by the Finance Minister, is one of the most important initiatives highlighted. But, it will not be able to combat the problem alone.
India can learn from the efforts of Sub-Saharan countries, especially Nigeria, in addressing sickle cell disease. Nigeria has the highest disease burden[2]of SCD globally and has made significant progress in improving awareness and access to medical care for individuals with sickle cell. For example, the country and citizen-sponsored NGOs have established a network of sickle cell clinics and have trained medical personnel to provide specialised care for individuals with the condition. This is a vital step in improving the lives of patients and creates an opportunity to standardize care for patient health improvement.
Another way India can learn from the efforts of Sub-Saharan countries is by investing in public health campaigns aimed at educating individuals about the importance of early diagnosis and treatment for sickle cell disease. In Nigeria, SCD has been identified to be more prevalent in less literate communities where fewer people are aware the disease can pass invisibly from parent to child. Community sensitisation campaigns have turned to pop stars, local celebrities, and trusted leaders to help get the word out.
Aside from sensitisation and advocacy campaigns, Nigeria has adopted early new-born screening to properly identify, treat and create routine treatment options that can improve life expectancy and reduce prospects of long-term disability. By focusing on early diagnosis and treatment, India can help to prevent the development of serious health problems in people with sickle cell anemia and provide opportunities to educate parents on future reproductive choices.
Another lesson from Nigeria’s experience with sickle cell anemia is the importance of building support networks for people with sickle cell disease including peer support groups and community-based organisations, which have helped to increase awareness about the disease and provide affected individuals with the support they need to manage their condition. By taking a similar approach in India, local governments and healthcare providers can help to build a supportive network for people with sickle cell anemia, which can help to improve their health outcomes and quality of life.
Beyond these steps, the government’s new financial commitment to sickle cell disease must be part of a broader effort against the disease. Taking bold steps to increase young people’s awareness levels can be achieved by standardizing the education materials and curricula for schools and youth focus groups.
One can argue that providing financial assistance to individuals from low-income backgrounds to help them access routine medical care and improving medical services and professional knowledge would provide a simple solution to the patient health accessibility dilemma. Currently, there is no cure for this condition, and the treatments available are limited with often serious side effects including hemolysis, priapism, organ damage, and addiction. India is strategically positioned to do much more by taking advantage of its robust pharmaceutical and research capacity to produce more effective treatments with fewer cost implications and more availability. This can revolutionise patient treatment on a local level and open a promising opportunity for India’s global medicinal exports.
References:
[1] https://tribal.nic.in/sickle-cell-disease-piramal-swasthya.aspx#:~:text=Sickle%20Cell%20Disease%20(SCD)%2C,births%20among%20STs%20have%20SCD
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9120745/