New Delhi
Sickle Cell Disease (SCD), a genetic condition, is widespread among the tribal population in India where about 1 in 86 births among Scheduled Tribes (ST) have it. The disease is prevalent among the States like Gujarat, Jharkhand, Madhya Pradesh, Chhattisgarh, Maharashtra, Odisha, Rajasthan, Tamil Nadu, Telangana, Karnataka, Kerala, Uttarakhand, West Bengal, Andhra Pradesh, Uttar Pradesh and Bihar.
The first description of sickle haemoglobin in India was by Lehman and Cutbush in 1952, among the tribal population in the Nilgiri Hills of south India. In the same year, Dunlop and Mazumder also reported the presence of sickle haemoglobin in Upper Assam’s tea garden workers who were migrant labourers from tribal groups in Bihar and Odisha. Since then, many population groups have been screened.
The view holds that mass screening and management of SCD is important to ensure greater life expectancy and quality of life for the tribal people. Largely, the requirement is to have the focus on screening with a view to identifying carriers and couples in their reproductive years, and providing counselling to prevent the spread of the disease.
At the Ministry of Tribal Affairs (MoTA), during the review meeting taken by the Prime Minister on January 20, 2015, the Ministry was asked to work out guidelines/draft protocol for counselling (pre-marital) people with sickle cell trait and disease.
The Ministry was also asked to collaborate with concerned Departments for taking up research and genetic studies for in-depth research on the subject. Thereafter, MoTA in coordination with States screened 1, 13, 83, 664 persons in 2016-17, out of whom 9,96,368 persons tested positive (Trait – 949057, Disease – 47311).
In 2018, the Abhay Bhang Committee, an expert committee in its report on Tribal Health, listed Sickle Cell Disease as one of the 10 special problems in tribal heath. The Committee suggested the establishment of a Tribal Health Cell and National Tribal Health Roadmap for dealing with tribal health issues.
The Tribal Health Cell at MoTA has taken several initiatives on the suggestions in the expert committee report including the launch of a Tribal Health Collaborative with the Ministry of Health and Family Welfare (MoHFW), NITI Aayog and NGOs working together in 50 aspirational districts to start with.
MoTA in coordination with MoHFW, State Governments, Organizations working on SCD and NGOs has been working proactively for devising strategies for prevention, care and management of SCD. It strives to innovate and improve care delivery for people living with Sickle Cell Disease through engagement of multiple stakeholders. Ministry has also developed Sickle Cell Disease Support Corner and strives to ensure data-based planning and management so as to bridge the gap between patients and health care services in tribal areas.
The Ministry has also been providing funds to different States for screening and testing as per requirement of the States.
Based on the learnings from different States, the Ministry has prepared a roadmap for prevention, management and elimination of Sickle Cell Disease with a target that no baby should be born with Sickle Cell Disease by 2047. The strategic roadmap initiated at MoTA and prepared by experts and DGHS, ICMR describes the building blocks around various aspects associated with SCD, be it awareness, screening, referral centers, adequate collaboration between patients, Central and State Government, medical research and research centres and NGOs. The Ministry with the help of top Hematologists and experts also prepared a training module to train medical and paramedical staff.
MOTA has spearheaded the demand for revision of the disability guidelines. These benefits are needed by many patients of hemophilia, thalassemia and SCD to participate in society on an even-playing field. Synergistic efforts of government, health care providers and civil society can improve the quality of life and extend the survival of these Hematology patients.
MoTA has created a Swasthaya portal along with SCD Corner and App. It has a repository of SCD patients and traits. It also consists of the latest technologies and guidelines from national and international field.
We all know that health comes by evolution and must meet the need of the people, as they perceive them. Faith healing has always been a part of the traditional treatment in the Tribal Health Care System, which can be equated with rapport or confidence building in the modern treatment procedure. Our cultural roots of Ayurveda and traditional medicine have time-tested wisdom. These are being evaluated with modern research methods to bring them forward to help our patients.
An action research project has been sanctioned by MoTA to understand the efficacy of Yoga based life-style intervention (YBLI) in reducing oxidative stress and its related complications at different organ and systems level. This pilot project in Nandurbar district of Maharashtra has shown promising results. Based on the outcomes, Ministry of AYUSH would be asked to facilitate and fund similar research.
Health is widely linked with development. MOTA encourages research and innovation for finding evidence base solutions to health problems.
MoTA supported The Council for Scientific and Industrial Research (CSIR), IGIB, which is working on CRISPR CAS-9 therapy on cells or Sickle Cell Disease. The breakthrough success of CRISPR-CAS (Clustered Regularly Interspaced Short Palindromic Repeats- CRISPR Associated) methods for correcting genetic diseases in patients has fueled significant scientific investment into bringing such methods to the clinic.
This technology (which won the Noble Prize in Chemistry in 2020) has the potential to be a single dose cure for blood disorders like Sickle Cell Anemia. To implement this program towards a possible first trial within the next 3 years (2021-2024) a total estimated budget of Rs 60 cr (10 cr per year) has been ensured under STC funds. This will be independent of local support extended towards the partnering institutes for the Research and Development going into the gene-editing pipeline.
The Ministry has provided funds through the scheme of Centre of Excellence, and has facilitated funding of these research projects through STC funds available with the Department of Science and Technology.
The Prime Minister is scheduled to launch a mission to eliminate Sickle Cell Anaemia by 2047 from Shahdol in Madhya Pradesh on June 27. It entails awareness creation, universal screening of 7 crore people in the age group of 0-40 years in affected tribal areas, and counselling through collaborative efforts of Central Ministries and State Governments.
MoTA’s role is to focus on prevention strategies. Awareness and counselling modules have been prepared and the strategic plan has been developed with regard to awareness campaigns in a mission mode. Strong referral mechanisms are being made through development of the competency centers throughout the country. However, all this can be achieved in a better manner when people from different walks of life join hands together to attain this common goal.
