MARGAO: The Goa State Commission for Protection of Child Rights (GSCPCR) has called upon the State government to create a registry of all rare diseases affecting children in Goa and ensure the availability of the necessary infrastructure and medical equipment for their treatment. This request comes after the Commission successfully managed to include a specific rare disease in the National Rare Disease Policy 2021, which was accepted by the Union Government, and notified in its recent memorandum.
The initiative began when one child in Goa was diagnosed with a rare bleeding disorder, Glanzmann Thrombasthenia (GT), in which even minor injuries can lead to bleeding, requires blood platelet transfusions with every bleed. Treatment for such disorders is rarely covered by health insurance. Subsequently, the Commission wrote to the Directorate of Health Services (DHS) and the Centre, urging them to address this matter.
“Under the policy, every child with a rare disease listed in the policy, is entitled to Rs 50 lakh one time support. Besides this, they can access diagnosis, treatment from designated 10 centres of excellence established for the purpose. The government has to facilitate this process. The Social Welfare Department has asked for the list of rare diseases in response to our recommendation,” said Peter Borges, Chairperson of GSCPCR.
Borges added, “With several children being identified in Goa with rare diseases, particularly SMA (Spinal muscular atrophy), Chanarin-Dorfman Syndrome (CDS), and others, the Commission held two review meetings to streamline the benefits of the National Rare Disease Policy 2021.”
Additionally, the Commission has recommended including children with rare diseases as a category for social protection benefits through the Dayanand Social Security Scheme (DSSD) by the Social Welfare Department. This aims to alleviate financial hardships faced by families of children with rare diseases, enabling them to purchase specialised equipment and compensate for the loss of income to caregivers.
Sabina Da Cunha, a parent of a child affected by Glanzmann Thrombasthenia (GT), expressed her gratitude, saying, “This has given me a sense of relief and will help my son and family navigate through the complex challenges in caregiving that I face daily.”
The Commission also extended its gratitude to the Directorate of Health Services, particularly Dr Prashant Suryawanshi, Integrated Disease Surveillance Programme, DHS, for their efforts in pursuing the matter with the National Rare Disease Committee.
