The Union Ministries of Health, Social Justice and Empowerment, and Tribal Affairs have been entangled in a quandary surrounding the issuance of permanent disability certificates for Sickle Cell Disease (SCD) patients over five years old for nearly three years. This delay has led to significant challenges for SCD patients in obtaining long-term disability benefits and assistance.
Understanding delays in Certificate Issuance
The inclusion of SCD in the list of disabilities under the Rights of Persons with Disabilities Act of 2016 prompted the Department of Empowerment of Persons with Disabilities (DEPwD) to extend the validity of disability certificates for SCD patients from one year to three years. Despite these alterations, these certificates still mandate a minimum of 25% disability.
The Ministry of Health and Family Welfare, responsible for establishing rules and criteria for these certificates, has been struggling to streamline this process. Similarly, the Ministry of Social Justice and Empowerment, tasked with issuing the certificates, and the Ministry of Tribal Affairs, advocating for the rights of SCD patients, also face difficulties. In the midst of these complexities, the Standing Committee on Empowerment of Women highlights the urgency of expedited issuance, asserting that SCD is a lifelong illness with blood and bone marrow transplantation as the only known cure, a daunting prospect especially for the tribal population.
Demystifying Sickle Cell Disease
SCD encompass inherited disorders that cause red blood cells to become hard, sticky, and resemble a C-shaped farm implement called a “sickle.” The disease manifests in a range of symptoms, including chronic anaemia leading to fatigue and weakness, painful episodes causing sudden, severe aches in bones and major joints, and delayed growth and puberty. Therapy involves blood transfusions to alleviate anaemia and reduce pain crises, alongside medication like Hydroxyurea to decrease the frequency of painful episodes and mitigate long-term complications.
Tackling SCD: Governmental Initiatives
The Indian government has launched several initiatives to combat SCD, primarily through the National Sickle Cell Anemia Eradication Mission. This ambitious project targets the elimination of sickle cell anemia from India by 2047. To support this mission, in 2016, the government released technical operational guidelines for prevention and control of sickle cell anaemia and set up integrated centres in 22 tribal districts for diagnosis and treatment. Additionally, the State Haemoglobinopathy Mission in Madhya Pradesh was established to surmount challenges in disease screening and management. These measures are supplemented by the Anaemin Mukt Bharat Strategy.
Anaemin Mukt Bharat Strategy: A Close Look
Anaemia Mukt Bharat strategy adopts a multi-faceted approach and includes interventions such as prophylactic Iron and Folic Acid Supplementation for children, adolescents, women of reproductive age, and pregnant women, irrespective of anaemia status. It also places emphasis on appropriate Infant and Young Child Feeding (IYCF) practices, enhanced intake of iron-rich, protein-rich and vitamin C-rich foods, and practice of delayed cord clamping in all health facility deliveries. Furthermore, it envisages bi-annual mass deworming for children aged 1-19 years under the National Deworming Day (NDD) programme and integrates deworming for pregnant women and women of reproductive age as part of the NDD strategy. Moreover, the strategy aims to address non-nutritional causes of anaemia, particularly in endemic pockets, with a special focus on maladies like malaria, haemoglobinopathies, and fluorosis.
As the country waits for a conclusive report from the Ministry of Health and Family Welfare by October 2023, the intensifying struggle faced by SCD patients underscores the urgency for establishing a streamlined, expedited process for issuing permanent disability certificates.
