India's Newborn Screening Programme Brings Down Sickle Cell Mortality to Under 5%, Says ICMR
New Delhi | June 24, 2025 - A landmark newborn screening initiative undertaken by the Indian Council of Medical Research (ICMR) has significantly reduced mortality caused by sickle cell disease (SCD) among infants in India. Between 2019 and 2024, the programme brought down mortality risk from a worrying 20–30% to less than 5%, according to Dr. Manisha Madkaikar, Director of the ICMR-Centre for Research Management and Control of Haemoglobinopathies (CRHCM), Nagpur.
The dramatic drop in mortality has been credited to early diagnosis and timely intervention in children born with the genetic blood disorder.
What Is Sickle Cell Disease (SCD)?
Sickle cell disease is a chronic, inherited blood disorder caused by a mutation in the hemoglobin gene. It leads to malformed, "sickle-shaped" red blood cells that clog blood vessels and reduce oxygen delivery throughout the body.
Key symptoms and complications of SCD include:
- Chronic anaemia
- Severe pain episodes
- Organ damage and failure
- Stroke
- Increased infection risk
SCD predominantly affects tribal and economically disadvantaged populations in India, particularly in states like Maharashtra, Odisha, Madhya Pradesh, Gujarat, and Tamil Nadu.
How the Newborn Screening Programme Helped
The ICMR-led Newborn Screening Programme for Sickle Cell Disease was initiated in 2019 and covered more than 63,500 newborns over five years.
Dr. Madkaikar explained the significance of early detection:
“Newborn screening is essential because as early as you diagnose the disease, you can initiate comprehensive care such as penicillin prophylaxis, vitamins, vaccination, and hydroxyurea therapy.”
Major Outcomes of the Programme:
- Mortality risk reduced from 30% to less than 5%
- Early medical care significantly improved survival and quality of life
- Family counseling and cascade screening helped identify more at-risk individuals
Of the total 63,536 newborns screened, 546 babies were diagnosed with SCD. Among these, 22 mortalities were recorded, representing a 4.15% death rate — a stark improvement from earlier statistics.
Where the Study Was Conducted
The large-scale study was conducted by ICMR-National Institute of Immunohaematology (NIIH), Mumbai, across seven states known for high SCD prevalence. The fieldwork covered both tribal and non-tribal populations.
Screening Locations:
- Rajasthan – Udaipur
- Gujarat – Bharuch
- Maharashtra – Palghar, Chandrapur, Gadchiroli
- Madhya Pradesh – Mandla, Dindori
- Odisha – Nabarangpur, Kandhamal
- Tamil Nadu – Nilgiris
State-wise distribution of cases:
- Gujarat: 134
- Maharashtra: 127
- Odisha: 126
- Madhya Pradesh: 97
- Rajasthan: 41
- Tamil Nadu: 21
Notably, 57% of screened newborns were from tribal families, further confirming that India’s tribal belts remain highly vulnerable to the disease.
Comprehensive Care: A Game-Changer
Once a newborn was identified as SCD-positive, a multi-pronged care plan was initiated:
- Penicillin prophylaxis to prevent infections
- Folic acid and vitamin supplements
- Regular immunizations against pneumonia and meningitis
- Hydroxyurea therapy, a drug proven to reduce painful episodes and improve blood flow
- Parental counseling to monitor symptoms and recognize warning signs
Dr. Madkaikar stressed that such care, delivered in a timely fashion, is crucial for survival and development:
“Our newborn screening has shown that comprehensive care given early significantly lowers mortality.”
Cascade Screening: Preventing Future Cases
One of the study's most impactful outcomes was the use of cascade screening. Once a baby tested positive for SCD, the entire family was tested, providing an opportunity to:
- Detect undiagnosed carriers or patients
- Educate parents on genetic risks
- Offer genetic counseling for future pregnancies
“You identify one baby, you test the whole family. It helps in further diagnosis and prevents the birth of new affected babies,” said Madkaikar.
Why This Matters for India’s Public Health
Sickle cell disease has long been underdiagnosed and undertreated in India. In tribal regions, lack of awareness, medical access, and screening infrastructure contribute to high infant and child mortality.
This screening programme, along with the 2023 National Mission to Eliminate Sickle Cell Anemia by 2047, aligns with India’s public health goals to:
- Eradicate preventable genetic diseases
- Improve healthcare access in remote regions
- Reduce child mortality in vulnerable communities
- Early diagnosis through newborn screening can drastically reduce mortality in sickle cell disease
- ICMR’s 2019–2024 programme reduced death rates from 30% to under 5%
- Over 546 newborns diagnosed across seven Indian states
- Cascade screening offers a pathway to prevent future cases and raise awareness
- SCD continues to impact tribal and rural communities the most, highlighting the need for targeted policy and healthcare expansion
What’s Next?
As India gears up to meet its target of eliminating sickle cell anemia by 2047, the success of this programme could serve as a model for national rollouts, especially in areas with high genetic prevalence.
Experts and policymakers are now calling for nationwide mandatory newborn screening in high-risk zones, improved rural healthcare systems, and sustained funding for genetic research and treatment.
The ICMR’s newborn screening programme stands as a beacon of hope for thousands of families affected by sickle cell disease in India. With early intervention proving to be life-saving, expanding such initiatives may pave the way toward a healthier, genetically informed future for millions.