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Rachel V Thomas

Sickle Cell Disease: Why India Must Add Curative Treatment to Meet Its 2047 Elimination Goal

Even though Sickle Cell Disease (SCD) affects thousands of families across the country, it continues to remain one of India's most under-recognized health challenges.

The National Sickle Cell Elimination Mission, launched in 2023, has brought renewed focus to the disease, with the goal of reducing the incidence of new sickle cell disease cases to zero by 2047.

The mission has largely focused on prevention and supportive care, but a comprehensive 360-degree approach is still missing, Dr. Gaurav Kharya, Clinical Lead, Centre for Bone Marrow Transplant &amp; Cellular Therapy, Senior Consultant, Pediatric Haematology, Oncology and Immunology, Indraprastha Apollo Hospitals, New Delhi, told HealthandMe.

“The current framework does not adequately address patients who continue to suffer from severe sickle cell disease despite receiving optimal supportive care,” Dr. Gaurav said.

“Such patients may be candidates for curative approaches such as bone marrow transplantation and, in the future, gene therapy. At present, bone marrow transplantation remains the available curative option,” he added.

Dr. Gaurav noted that for decades, treatment focused primarily on controlling symptoms and managing complications. The mission led to free genetic screening cards, lifestyle counseling, and access to symptom-managing medication.

"While these measures remain important, advances in stem cell and bone marrow transplantation have changed the treatment landscape for selected patients”. 

The Sickle Cell Mission does not currently address transplant support or provide specific directives to state governments regarding curative treatment.

“The impact of these interventions can be life-changing. Children who once depended on repeated hospital visits, blood transfusions and constant medical care may be able to look forward to healthier and more independent lives after successful treatment,” Dr Gaurav said.

The expert called for “incorporating support for curative therapies and allocating dedicated funding could strengthen the program and create a truly comprehensive approach that focuses equally on prevention, supportive care and curative treatment”. 

<h2>Achievements of Sickle Cell Mission</h2>

India contributes a significant proportion of global sickle cell births every year, making it a major public health concern.

The disease is particularly prevalent in several regions of India, especially among tribal and underserved populations in states such as Madhya Pradesh, Maharashtra, Chhattisgarh, Gujarat, Odisha and Rajasthan.

One of the major achievements of the Sickle Cell Elimination mission has been bringing attention to a disease that had long remained neglected. Previously, policy-making, implementation, and fund allocation for sickle cell disease in high-burden states were limited.

The mission has brought a strong focus on sickle cell disease, prompting states with a high disease burden, including Madhya Pradesh, Chhattisgarh, Odisha, Gujarat and Maharashtra, to actively work on policy-making and implementation.

The primary objective of the mission has been prevention. Dr. Gaurav told HealthandMe that prevention can only happen when individuals know their sickle cell status and whether they carry the gene responsible for the disease. 

“Once identified, individuals can receive counselling on how the disease can be prevented. Proper genetic counselling can help families understand the risks associated with passing the condition to future generations,” he said.

Following the implementation of the mission, large-scale screening programs have been conducted, particularly in high-burden states. These efforts have led to the identification of significant numbers of people with sickle cell trait as well as individuals with homozygous sickle cell disease.

Another key objective of the mission is to provide optimal supportive care to patients. Many patients have been linked to nearby Primary Health Centers (PHCs) and Community Health Centers (CHCs) to ensure access to regular medicines and supportive treatments such as hydroxyurea. Associated genetic counselling has also been initiated as part of these efforts.

To help reduce the number of children born with severe disease, Dr Gaurav urged for further boosting 

<ul><li>awareness of carrier status, </li><li>access to genetic counseling </li><li>wider implementation of screening programs. </li></ul>

Sickle Cell Disease is an inherited blood disorder that affects the shape and function of red blood cells. Instead of being round and flexible, the red blood cells become sickle or crescent-shaped, making it difficult for them to move smoothly through blood vessels.

This can lead to severe anemia, recurrent episodes of pain, infections, organ damage and, in some cases, life-threatening complications such as stroke or acute chest syndrome.

The impact of Sickle Cell Disease extends far beyond physical symptoms, Dr Gaurav said. Children living with the condition often experience repeated hospital visits, missed school days and limitations in daily activities.

Parents frequently face emotional distress, financial strain and the challenge of managing a lifelong medical condition.

Dr Gaurav said that one of the biggest challenges is that many children are diagnosed only after symptoms begin to appear. Early screening can help identify affected infants before serious complications develop, allowing doctors to initiate preventive care and monitor the disease more effectively.

Newborn screening programs, regular follow-ups, and access to specialized care can significantly improve the quality of life and reduce the risk of long-term complications, the expert told HealthandMe.

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Even though Sickle Cell Disease (SCD) affects thousands of families across the country, it continues to remain one of India's most under-recognized health challenges. The National Sickle Cell Elimination Mission, launched in 2023, has brought renewed focus to the disease, with the goal of reducing the incidence of new sickle cell disease cases to zero by 2047.The mission has largely focused on prevention and supportive care, but a comprehensive 360-degree approach is still missing, Dr. Gaurav Kharya, Clinical Lead, Centre for Bone Marrow Transplant & Cellular Therapy, Senior Consultant, Pediatric Haematology, Oncology and Immunology, Indraprastha Apollo Hospitals, New Delhi, told HealthandMe. “The current framework does not adequately address patients who continue to suffer from severe sickle cell disease despite receiving optimal supportive care,” Dr. Gaurav said. “Such patients may be candidates for curative approaches such as bone marrow transplantation and, in the future, gene therapy. At present, bone marrow transplantation remains the available curative option,” he added. Dr. Gaurav noted that for decades, treatment focused primarily on controlling symptoms and managing complications. The mission led to free genetic screening cards, lifestyle counseling, and access to symptom-managing medication."While these measures remain important, advances in stem cell and bone marrow transplantation have changed the treatment landscape for selected patients”. The Sickle Cell Mission does not currently address transplant support or provide specific directives to state governments regarding curative treatment.“The impact of these interventions can be life-changing. Children who once depended on repeated hospital visits, blood transfusions and constant medical care may be able to look forward to healthier and more independent lives after successful treatment,” Dr Gaurav said. The expert called for “incorporating support for curative therapies and allocating dedicated funding could strengthen the program and create a truly comprehensive approach that focuses equally on prevention, supportive care and curative treatment”. Achievements of Sickle Cell MissionIndia contributes a significant proportion of global sickle cell births every year, making it a major public health concern.The disease is particularly prevalent in several regions of India, especially among tribal and underserved populations in states such as Madhya Pradesh, Maharashtra, Chhattisgarh, Gujarat, Odisha and Rajasthan.One of the major achievements of the Sickle Cell Elimination mission has been bringing attention to a disease that had long remained neglected. Previously, policy-making, implementation, and fund allocation for sickle cell disease in high-burden states were limited. The mission has brought a strong focus on sickle cell disease, prompting states with a high disease burden, including Madhya Pradesh, Chhattisgarh, Odisha, Gujarat and Maharashtra, to actively work on policy-making and implementation. The primary objective of the mission has been prevention. Dr. Gaurav told HealthandMe that prevention can only happen when individuals know their sickle cell status and whether they carry the gene responsible for the disease. “Once identified, individuals can receive counselling on how the disease can be prevented. Proper genetic counselling can help families understand the risks associated with passing the condition to future generations,” he said. Following the implementation of the mission, large-scale screening programs have been conducted, particularly in high-burden states. These efforts have led to the identification of significant numbers of people with sickle cell trait as well as individuals with homozygous sickle cell disease. Another key objective of the mission is to provide optimal supportive care to patients. Many patients have been linked to nearby Primary Health Centers (PHCs) and Community Health Centers (CHCs) to ensure access to regular medicines and supportive treatments such as hydroxyurea. Associated genetic counselling has also been initiated as part of these efforts. To help reduce the number of children born with severe disease, Dr Gaurav urged for further boosting awareness of carrier status, access to genetic counseling wider implementation of screening programs.  What Is Sickle Cell Disease?Sickle Cell Disease is an inherited blood disorder that affects the shape and function of red blood cells. Instead of being round and flexible, the red blood cells become sickle or crescent-shaped, making it difficult for them to move smoothly through blood vessels.This can lead to severe anemia, recurrent episodes of pain, infections, organ damage and, in some cases, life-threatening complications such as stroke or acute chest syndrome.The impact of Sickle Cell Disease extends far beyond physical symptoms, Dr Gaurav said. Children living with the condition often experience repeated hospital visits, missed school days and limitations in daily activities.Parents frequently face emotional distress, financial strain and the challenge of managing a lifelong medical condition.Why Early Diagnosis MattersDr Gaurav said that one of the biggest challenges is that many children are diagnosed only after symptoms begin to appear. Early screening can help identify affected infants before serious complications develop, allowing doctors to initiate preventive care and monitor the disease more effectively.Newborn screening programs, regular follow-ups, and access to specialized care can significantly improve the quality of life and reduce the risk of long-term complications, the expert told HealthandMe.

sickle cell disease: why india must add curative treatment to meet its 2047 elimination goal

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