On the 1st of July, Prime Minister Narendra Modi launched the National Sickle Cell Anaemia Elimination Mission (NSCEM) from Shahdol, Madhya Pradesh. The aim of this Mission is to eliminate chronic disease by 2047.
PM Modi emphasised that the biggest beneficiaries of these efforts will be the people of Adivasi societies – Gond, Bhil, and others. He further stated that the nation is taking ‘Sankalp’ (pledge) to secure the lives of people from tribal communities, free them from sickle cell disease (SCD) and safeguard the lives of more than 2.5 lakh affected children and their families.
He said, “Sickle Cell Disease is a disease that impacts tribal sections of societies significantly. The government is committed to eliminate the disease before India celebrates its Amrit Kaal in 2047.”
देश ने आज मध्य प्रदेश के शहडोल की धरती से हमारे आदिवासी भाई-बहनों के लिए एक बहुत बड़ा संकल्प लिया है। ये संकल्प सिकल सेल एनीमिया बीमारी से मुक्ति दिलाने का है। pic.twitter.com/vK3ciDnvzz
— Narendra Modi (@narendramodi) July 1, 2023
Union Minister for Health and Family Welfare, Dr. Mansukh Mandaviya, Governor of Madhya Pradesh Mangubhai Patel, Chief Minister of Madhya Pradesh Shivraj Singh Chouhan, and several Union Ministers and State office bearers were also present at the event.
Sickle Cell Disease, its symptoms, treatment, and precautions
Sickle cell disease (SCD) is a chronic single-gene blood disorder. An infected patient’s body has the presence of abnormal haemoglobin, the protein which is responsible for carrying oxygen in Red Blood Cells (RBCs). Normally, RBCs are round or disc-in shape and are flexible, so they can move easily through the blood vessels. But some red blood cells of an SCD patient become rigid and sickle or crescent-shaped, which slows or blocks the flow of blood, resulting in the name sickle cell anaemia.
The symptoms of sickle cell anaemia can vary in severity and can include Chronic pain, Anaemia, Increased susceptibility to infections, Organ damage, and delayed growth and development.
As these sickle-shaped cells are rigid they can block the flow of blood through the vessels and lead to pain episodes known as “sickle cell crises.” This can occur in various parts of the body, including the bones, chest, abdomen, and joints.
The abnormal RBCs are fragile and can easily break down. As per medical research, normal healthy RBCs are expected to last for 120 days before replacement but in the case of an anaemic patient, the RBCs expire within 10 to 20 days. This leads to a shortage of RBCs in the body, resulting in anaemia, which can cause fatigue, weakness, and shortness of breath.
These rigid sickle cells can also harm the spleen making people more susceptible to infections. The spleen is an organ in the body that filters blood. An SCD patient may have swelling in their hands and feet.
The blockage of blood flow and/or reduced oxygen supply can damage organs such as the spleen, kidneys, lungs, and brain, leading to serious complications. Further, SCD is a chronic disease that is characterised by its persistence and ongoing nature.
As stated above, SCD is a single-gene blood disorder. It means that a patient is likely to suffer from SCD only when the individual gets two infected genes, one from the mother and one from the father. In case only one parent has a gene-related disease, then the offspring or kid is said to be a “carrier” but the individual will be healthy.
Now, as per Hopkins Medicine, if a carrier has a child with another carrier, there is a higher probability, nearly 25%, that the child will have SCD. Additionally, studies have highlighted that SCD is widespread in populations living in malaria-endemic regions, this is claimed to be a major reason why the tribal population is more prone to this disease and the government is specifically focusing on this aspect.
That is why, early tracing and matching Sickle-cell genetic status is a potent weapon against this disease. Sickle cell anaemia can be diagnosed by blood tests, which identify and measure different types of haemoglobin in red blood cells, including the abnormal haemoglobin that causes sickle cell anaemia. Testing the blood of newborns is key to combating the disease. Prenatal test of unborn babies is also possible to find out if they have the disease.
As per The National Heart, Lung, and Blood Institute (NHLBI), the only treatment to cure the illness is bone marrow or stem cell transplants, however, both of these treatment processes are said to have their own hazards. Apart from this, blood transfusions are done to reduce the complications of the disease. Doctors also prescribe medicines that can reduce symptoms caused by sickle cell anaemia.
There is no medicine to cure the disease. Earlier, people with the disease used to die in their childhood. But now with proper management and treatment, people with sickle cell anaemia can live into their 50s.
As it is an inherited disease, nothing can be done to prevent getting the disease. People can undergo a blood test to see if they are carriers and can pass on the disease to their children.
Components of the National Sickle Cell Aanemia Elimination Mission (NSCEM)
Informing about the Mission on the 1st of July, PM Modi said, “NSCEM combines both screening and awareness strategies to ensure early detection and treatment while promoting education about the disease as people may not be aware that they suffer from this disease, and may unintentionally transfer it to the next generation, hence the role of screening becomes even more important in this regard.”
During the event, Health Minister Mandaviya emphasised that this is a genetic disease. Subsequently, he asked people from the high-burden states to match their Sickle Cell Genetic Status Cards before marriage to ensure that the disease is not transferred to the next generation.
He said, “The elimination programme reflects the government’s Intent and determination to eliminate the spread of Sickle Cell Diseases. Across 278 districts of India, screenings will be done for people between 0-40 years to stem the further spread of the disease.”
The program is a part of the National Health Mission (NHM). In the next three years, the program aims to screen approximately 7.0 crore people and promote early diagnosis and intervention.
The program is currently implemented in 17 high-focus states across the country. The 17 states are- Gujarat, Maharashtra, Rajasthan, Madhya Pradesh, Jharkhand, Chhattisgarh, West Bengal, Odisha, Tamil Nadu, Telangana, Andhra Pradesh, Karnataka, Assam, Uttar Pradesh, Kerala, Bihar, and Uttarakhand.
Apart from the announcement of the mission, PM Modi also launched training modules for primary, secondary, and tertiary care. These include medical officers, staff nurses, Community Health Officers, Auxiliary Nurse Midwives, and Accredited Social Health Activist workers.
Further, PM Modi also released an awareness module for Sickle Cell Disease for Non-Health Functionaries, Parents, and Teachers, as well as a counseling module for patients, caregivers, and pregnant women.
Early detection and gene status matching are crucial in preventing the hereditary transmission of sickle cell disease (SCD), as it is a genetic disease. To emphasize this, Prime Minister Modi distributed Sickle Cell Genetic Status Cards to beneficiaries during the event.
During the event, PM Modi also highlighted efforts made by his government for improving holistic health care in the country. He stated that the government has successfully brought down the numbers of Kalaazar from 11,000 in 2013, to under 1000 today, and malaria cases from 10 lakhs in 2013 to under 2 lakhs today.
Similarly, leprosy cases have come down from 1.25 lakh to 70-75 thousand. In this, he also highlighted how his government is determined to eliminate the spread of tuberculosis by 2025.
Additionally, PM Modi also launched the distribution of about 3.57 crore digital cards to Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (AB-PMJAY) beneficiaries. Out of these around 1 crore cards are being distributed physically to the beneficiaries in Madhya Pradesh alone.
