Union Budget 2023: Finance Minister Nirmala Sitharaman on Wednesday announced that the government will work towards the mission to eliminate sickle-cell anaemia while presenting the Union Budget 2023-24 in the Parliament.
“A mission will be launched to eliminate sickle cell anaemia by 2047. The mission will entail awareness creation, universal screening of seven crore people in the 0-40 years age group in affected tribal areas and counselling through collaborative efforts of central ministries and state governments,” the Finance Minister said while presenting the budget in Lok Sabha.
However, the announcement has made several doctors and healthcare experts apprehensive about the move and the goal. Some doctors told Financial Express.com that this is an extremely “ambitious project” as reaching tribal people in far away remote interior areas of various states is challenging.
What is Sickle-Cell Anaemia?
Sickle-cell anaemia is one of a group of inherited disorders known as sickle-cell disease. Due to this genetic anomaly, the red blood cells of the affected person become misshapen and break down. Due to the abnormal shape, the blood flow is affected. Usually, Red blood cells are usually round and flexible, so they move easily through blood vessels. In sickle cell anaemia, some red blood cells are shaped like sickles or crescent moons. These sickle cells also become rigid and sticky.
According to doctors, signs and symptoms of sickle cell anaemia usually appear around 6 months of age. The symptoms often include anaemia, episodes of extreme pain, called pain crises, swelling of hands and feet, frequent infections, delayed growth or puberty, and vision problems. Currently, there’s no cure for most people with sickle cell anaemia. However, treatments are available to relieve pain and prevent complications associated with the disease.
How Government is Planning To Eliminate Sickle-Cell Anaemia by 2047?
On Wednesday, Health Minister Mansukh Mandaviya welcomed the decision and said sickle cell anemia, or sickle cell disease, is prevalent mostly in the tribal communities of India. Mandaviya said that the government will start an awareness programme in tribal areas affected by sickle-cell anaemia.
According to a report by ANI, Mandaviya said that the 7 crore people in the age group 0-40 years will be screened with support from ministries and state governments.
He also said that the screening programme will be done in approximately 200 districts.
“An important announcement was made in this budget for the Ministry of Health. A government lab will be opened for those doing research in the health sector. The country should be free from sickle cell anaemia when celebrating 100 years of independence,” the Minister further said.
Mandaviya also said that screening will be done through point tests, although testing still happens in many areas at a very low level. Both men and women will be tested, and if both are found positive, adequate counselling will be given to them, including the fact that they should not indulge in matrimony with each other as their children could also be seen carrying the same disease. The card will help identify this,” Mandaviya said.
According to reports, funds will be disbursed through the National Health Mission and states will receive 60 percent of the funds from the central government and 40 percent from state contributions.
“The sickle-cell anaemia is a genetic mutation. So, it’s difficult to eliminate….only a few selected pockets of tribal areas are affected. It’s not common everywhere. It is definitely useful as they plan to screen them and give treatment. Yes, there is a national programme for eliminating sickle cell anaemia…it is now being scaled up…that is good. It’s always good to work on diseases that affect the poor. However, that is not the most important thing affecting the health sector. The problem is, we have a dual burden of diseases that are affecting millions of people and need to be comprehensively addressed…I expected more from the budget on the health front,” K. Sujatha Rao, former Secretary of Health and Family Welfare, told Financial Express.com.
There are approximately 200 districts in the country where the disease is prevalent, mostly in Maharashtra. Madhya Pradesh, Chattisgarh, Gujarat, Rajasthan, Jharkhand and Odisha.
Sickle-Cell Anaemia in India
According to the Ministry of Tribal Affairs, sickle-cell anaemia is widespread among the tribal population in India where about 1 in 86 births among STs have SCD. The Ministry 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 will collate all information related to SCD among tribal people in India, including proving them a platform to register themselves if they have the disease or the trait,” The Ministry stated.
In India, Under the Anemia Mukt Bharat Program, screening for hemoglobin disorders like Sickle cell anaemia is a strategy to tackle the burden of anaemia in the country. According to past two National Family Health Surveys, the status of anaemia has also worsened. In 2016, the government released Guidelines for Prevention and Control of Hemoglobinopathies in India, according to a report by Nivarana.
The Right of People with Disability Act 2016 recognized a person with sickle cell disease as a person with a disability thus making them eligible to receive the Disability Certificate and the benefits it offers. However, due to stringent criteria, people with sickle cell disease find it extremely difficult to get a disability certificate from the authorities, the Nivarana report stated.
In 2020, the Ministry of Tribal Affairs launched the Sickle Cell Disease Support Corner to bridge the gap between patients and health care services in tribal areas. However, as checked by Financial Express.com as on 2 February 2023 the web address of the portal says it is still “Under Maintenance.”
What is The Way Ahead?
Suresh Ramu, CEO, Cytecare Cancer Hospitals told Financial Express.com that Union Finance Minister Nirmala Sitharaman’s call to eliminate sickle cell anaemia by 2047 is a bold step.
“While the available treatment options for the inherited blood disorder include medication, blood transfusion, and bone marrow transplant, there’s much work to be done in terms of infrastructure. Also, bone marrow transplants have to become more accessible and affordable for the average Indian,” Ramu told Financial Express.com.