Sickle Cell Anaemia & CRISPR Technology 

General Studies Paper -3

Context: Marginalised tribal communities face difficulties in accessing basic healthcare and diagnostics of Sickle cell disease (SCD).

About Sickle cell disease (SCD)

• It is an inherited haemoglobin disorder in which red blood cells (RBCs) become crescent or sickle-shaped due to a genetic mutation.
  • These RBCs are rigid and impair circulation, often leading to anaemia, organ damage, severe and episodic pain, and premature death.
• India has the third highest number of SCD births, after Nigeria and the Democratic Republic of the Congo. Regional studies suggest approximately 15,000-25,000 babies with SCD are born in India every year, mostly in tribal communities.
• According to the 2023 ‘Guidelines for National Programme for Prevention and Management of Sickle Cell Disease’, of the 1.13 crore persons screened in different states, about 8.75% (9.96 lakh) tested positive.
• It is also one of the 21 “specified” disabilities listed in the Schedule of the Rights of Persons with Disabilities Act 2016.
• Steps: In 2023, the Government of India launched the National Sickle Cell Anaemia Elimination Mission, to eliminate SCD by 2047.
• Challenges: At present treatment and care for SCD remains grossly inadequate and inaccessible.
  • Like the (un)availability of the drug hydroxyurea
  • Blood transfusion is another important therapy for SCD, but its availability is limited to district-level facilities.
  • Bone marrow transplantation (BMT), until recently the other cure for SCD, is out of reach for most SCD patients due to the difficulty in finding matched donors, the high cost of the treatment at private facilities, and long waiting times in public hospitals.
• Solution: the application of the gene-editing technology called CRISPR (short for ‘Clustered Regularly Interspaced Short Palindromic Repeats’) to treat SCD is important — for its novelty and promise but also for the health disparities it makes apparent.
• The U.S. Food and Drug Administration recently approved two gene therapies, Casgevy and Lyfgenia, to treat SCD in people ages 12 and older.
• CRISPR in India: In India, CRISPR’s possible medical applications also pose ethical and legal quandaries.
  • The National Guidelines for Stem Cell Research 2017 prohibit the commercialisation of stem cell therapies .
  • Gene-editing stem cells is allowed only for in-vitro studies.
  • India has approved a five-year project to develop CRISPR for sickle cell anaemia.
  • Under its Sickle Cell Anaemia Mission, the Council of Scientific and Industrial Research is developing gene-editing therapies for SCD.

Adopting and promoting advanced therapies like CRISPR in India requires a comprehensive approach that accounts for inequities and disparities in the country’s overall healthcare access framework.