A three-year-old girl from Delhi suffering from a rare genetic disorder has moved the Delhi High Court, urgently requesting financial assistance for a life-saving bone marrow transplant. The treatment costs up to Rs 40 lakh and is not available at government hospitals, according to the petition.
Details of the Case
The petition, filed on behalf of Baby Sanskriti Bhagat, also known as Saanchi, states that she suffers from LRBA deficiency. This rare inherited disorder affects the immune system, leading to severe immunodeficiency and autoimmune complications.
Medical History
The child began experiencing recurrent fever and severe anemia during infancy, requiring eight blood transfusions within eight months. Doctors initially suspected multiple conditions before a whole-genome test conducted in July last year identified the underlying genetic disorder.
Treatment and Costs
Specialists at Apollo Hospital, Chennai, concluded that a bone marrow transplant is the only curative treatment, estimating the cost at Rs 40 lakh. A similar estimate from Apollo Hospital, Delhi, placed the cost at approximately Rs 36 lakh. Notably, AIIMS Delhi informed the family in April this year that it lacked the facilities required to provide the specialized treatment needed for the child's condition.
Family's Financial Struggle
The child's father told the court that he has exhausted his savings on diagnosis and treatment and is unable to bear the cost of the transplant. The family has sought financial assistance under the National Policy for Rare Diseases, which provides support of up to Rs 50 lakh for eligible patients.
Legal Argument
Appearing for the petitioner, advocate Ashok Agarwal argued that the primary objective of the National Policy for Rare Diseases is to save the life of a child suffering from a rare disease. He contended that it should not matter whether treatment is provided at a government or private hospital. Denying financial assistance solely because the treatment is being undertaken at a private facility would defeat the purpose of the policy.
Court Plea
The petition seeks directions to the Union government to release funds for the transplant and ensure that treatment begins without delay. Any postponement could lead to irreversible deterioration in the child's health, the plea argues.
This case highlights the challenges faced by families dealing with rare diseases, especially when life-saving treatments are not available in public hospitals. The Delhi High Court's decision could set a precedent for financial assistance under the National Policy for Rare Diseases.
