Doctors flag removal of thalassemia from Centre's child health programme

Doctors with Disabilities has urged J P Nadda to restore thalassemia and sickle cell screening in RBSK 2.0. They say the exclusion weakens early diagnosis and clashes with disability law and existing health missions.

In Short

• Doctors wrote to J P Nadda over changes in child screening norms
• Earlier guidelines had listed beta-thalassemia and sickle cell anaemia for screening
• The group says disability law requires early identification and frontline training

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A group of doctors has raised concerns over the Union government’s decision to drop thalassaemia and sickle cell disease from the revised Rashtriya Bal Swasthya Karyakram (RBSK) 2.0, arguing that the move weakens efforts to identify and support children living with lifelong blood disorders and disabilities.

In a letter addressed to the Union health minister J P Nadda, doctors associated with the group Doctors with Disabilities, led by senior physician and medical educator Dr Satendra Singh, described the exclusion as a “regressive step” that undermines disability rights and public health commitments.

India Today has seen a copy of the letter.

While welcoming the launch of RBSK 2.0 as an expansion of one of the world’s largest child health screening programmes which now also includes diabetes for kids, the group said the revised framework had failed to integrate disability and chronic blood disorders into its core design.

RBSK, launched in 2013 under the National Health Mission, was intended to screen children for health conditions under the “4Ds” framework — defects at birth, deficiencies, diseases and developmental delays.

Earlier versions of the programme had included thalassaemia and sickle cell anaemia as optional conditions for screening.

Their omission from RBSK 2.0, the doctors argued, comes despite these conditions being recognised as specified as disabilities under the Rights of Persons with Disabilities Act, 2016.

GENETIC DISEASE BURDEN

Thalassaemia is a hereditary blood disorder caused by defects in haemoglobin, the protein responsible for carrying oxygen in the blood. The condition leads to severe anaemia and, in serious cases, lifelong dependence on blood transfusions.

India carries one of the world’s heaviest burdens of disease. Experts estimate that around 12,000 children with major thalassaemia are born in the country every year, accounting for nearly 10 percent of global cases.

States such as Gujarat, Maharashtra, Punjab and West Bengal report particularly high prevalence, often concentrated within certain communities.

Though India does not yet have a national thalassaemia registry, estimates suggest that nearly 42 million Indians are carriers of the disease, also known as thalassaemia minor. Carriers may not show symptoms themselves, but when both parents carry the faulty gene, children can inherit severe forms of the disorder from birth.

Beta-thalassaemia is the most common severe form in India and often requires regular blood transfusions to sustain life. Doctors estimate that between one lakh and 1.5 lakh children in India are currently living with thalassaemia major.

The doctors’ letter also pointed to the burden of sickle cell disease, especially among tribal populations. India has one of the world’s largest tribal populations, accounting for 8.6 percent of the population according to the last census.

RIGHTS-BASED CONCERNS

In their communication, the doctors argued that the revised programme reflects a narrow medical approach instead of a rights-based framework promised under disability law and international commitments.

They noted that after India ratified the United Nations Convention on the Rights of Persons with Disabilities, the country expanded its recognised disabilities from seven to 21 categories, including thalassaemia, sickle cell disease and haemophilia.

However, the group said the revised 124-page RBSK 2.0 document barely refers to disability.

According to the letter, the term “disability” does not appear meaningfully in the guidelines, despite provisions in the Rights of Persons with Disabilities Act mandating early identification, annual screening, awareness generation and training of frontline health workers.

The contended that the programme’s continued use of the “4Ds” framework ignores disability as a separate category and fails to align with legal obligations under Sections 25 and 47 of the Act. They also criticised the absence of disability-related indicators in the programme’s monitoring framework and the lack of integration with the Unique Disability ID (UDID) system.

The letter argued that excluding specified disabilities from screening could deny children early diagnosis and intervention, particularly in rural and underserved regions where access to specialised care remains limited.

The group also highlighted that India’s exclusion of thalassaemia screening appears inconsistent with parallel national initiatives such as the National Sickle Cell Elimination Mission launched in 2023 and the National Health Mission’s own guidelines on prevention and control of haemoglobin disorders.

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