World Sickle Cell Day: History & Significance, Early Detection, Treatment

Sickle cell disease is a genetic condition, which is widespread among the tribal population in India. About 1 in 86 births among Scheduled Tribe (STs) have SCD. Aware of the gravity of the issue, the Ministry of Tribal Affairs has launched a sickle cell disease support corner to bridge the gap between patients and health care services in tribal areas.

New Delhi:The World Sickle Cell Day is an international awareness day observed every year on June 19 to inform people about sickle cell disease (SCD). Various global and local organisations come together during this day to promote awareness campaigns and activities, which recognise the necessity of the early diagnosis of sickle cell disease, its treatment and preventive strategies to avoid the disease.

Sickle cell disease, a genetic condition, is widespread among the tribal population in India where about 1 in 86 births among Scheduled Tribe (STs) have SCD. It affects haemoglobin (responsible for carrying oxygen in the body) in red blood cells, which can result in morbidity and mortality via distinct pathways. Early detection and treatment of SDC is of utmost importance for improved health conditions.

What is sickle cell disease?

Sickle cell disease is a group of genetic red blood cell diseases. It modifies red blood cells’ morphology, which impacts their ability to distribute oxygen throughout the body. The protein known as haemoglobin, which carries oxygen, is found in red blood cells. Healthy red blood cells are round. Red blood cells with sickle cell disease have a genetic abnormality that causes them to take on a crescent or “sickle” shape. It is a chronic single-gene disorder causing a debilitating systemic syndrome characterised by chronic anaemia, acute painful episodes, organ infarction and chronic organ damage and by a significant reduction in life expectancy.

History & Significance

Recognised by the United Nations (UN), World Sickle Cell Day creates global awareness about sickle cell. The resolution of the United Nations General Assembly passed on December 22, 2008, recognised sickle cell disease as a public health hazard and "one of the world's main genetic illnesses." The resolution calls on members to create sickle cell disease awareness on a national and international scale on June 19 each year.

Sickle cell disease is one of the majorly occurring monogenic diseases (over 3,00,000 affected births worldwide). The majority of them are seen in low-and middle-income countries. Dedicating a specific day for sickle cell disease ensures the comprehensive awareness that could be brought out across individuals, population, services and systems levels.

Theme For This Year

The theme for this year's World Sickle Disease Day is "Hope Through Progress: Advancing Sickle Cell Care Globally". It's a call to highlight by coming together, through everyone's amplified voices, by creating awareness, reducing stigma and driving meaningful change for the millions affected by this disease.

Indian Perspective

India has the world's second-greatest sickle cell disease burden, affecting socially, politically and economically marginalised people, particularly scheduled tribes. Under the National Health Mission, the Government of India supports the states for the prevention and management of sickle cell disease as per their annual PIP proposals. The Ministry has also released technical operational guidelines for the prevention and control of hemoglobinopathies in 2016, including sickle cell anaemia. Furthermore, in terms of treatment, support is given under NHM for capsule hydroxyurea and free blood transfusion for all sickle cell patients (men & women) as per the state’s proposal.

Elimination Sickle Cell

In the 2023-24 Union Budget, the Government of India has announced a mission to eliminate sickle cell anaemia by 2047. The mission entails a focus on awareness creation, universal screening of approximately seven crore people in the 0-40 years age group in affected tribal areas and counselling through collaborative efforts of Union Ministries and state governments.

Madhya Pradesh Leading Fight Against Sickle Cell

State Haemoglobinopathy Mission has been established in Madhya Pradesh to tackle the challenges in screening and management of sickle cell disease. A pilot project was launched by the Central government on November 15, 2021, for screening in Jhabua and Alirajpur districts of MP and 89 tribal blocks included in the second phase of the project. As reported by the state, a total of 9,931,14 persons have been screened. Out of whom 18,866 have been detected with HbAS (Sickle Trait) and 1,506 (HbSS sickle disease). Furthermore, the state government has established an Integrated Centre for Hemophilia and Hemoglobinopathies in 22 Tribal Districts for the treatment and diagnosis of patients.

The initiative by the Ministry of Tribal Affairs

The Ministry of Tribal Affairs has launched the sickle cell disease support corner to bridge the gap between patients and health care services in tribal areas. The portal provides a web-based patient-powered registration system, which collates all information related to SCD among tribals in India, including providing them a platform to register themselves if they have the disease or the trait.

The support corner was envisioned as a one-stop portal with information about SCD in tribal regions of India. The portal will give access to real-time data to every visitor through a dashboard and online self-registration facility and will act as a knowledge repository with information about the disease and various government initiatives. The National Council on Sickle Cell Disease has also been constituted of senior officials of the Central government and health care private and public bodies for timely and effective action.

Role of the Indian Council of Medical Research (ICMR)

The Indian Council of Medical Research (ICMR) has conducted a health technology assessment for existing point-of-care tests that have been manufactured in India, endorsing their efficacy against sickle cell disease.

The initiative has been followed by the onboarding of state governments on these point-of-care tests, their rates and the possible symptoms that may be prevalent with the targeted group of seven crore people for whom screening will be done. As per the broad outline, the Health Ministry supports the state governments through the National Health Mission to provide financial help. The state governments can choose the level of screening, including one level or two levels of screening that they deem fit. Additionally, the Health Ministry has appointed ICMR, AIIMS and medical colleges as nodal agencies for all states as a point of reference regarding technical guidance.