Parents of children with lysosomal storage disorders (LSD), a group of more than 50 genetically inherited and potentially fatal disorders that results in those affected requiring a lifetime of enzyme support, are awaiting word from the State Health Department on the arrival of medicines.
Last week, the Supreme Court upheld a verdict given by the Madras High Court in March urging the State government to allocate funds for the treatment of children with LSD. The Court had further advised the State and the Union Health Ministry to discuss and arrive at a decision that would enable the children to get the life-sustaining treatment.
The Madras High Court had directed the Union Health Ministry to provide for a one-time aid of 4.4 crore for at least 11 patients as an interim measure. The State and Central government were supposed to provide funds for the treatment, wherein the State would bear 40% of the cost and the Centre, 60%.
Since the discussion between the State and Centre remained inconclusive, it was the children who suffered, parents said.
S. Suresh, managing trustee, Fetal Research Care Foundation, welcomed the Supreme Court verdict and said a charitable organisation constituted for the benefit of children 15 years ago now had a significant number of children under its care. The process [of providing aid for treatment] had started and eventually got stuck. The Tamil Nadu government has set aside 5 crore, he said.
M. Raja, the father of one of the children who is undergoing the treatment, said the State Health Department was procuring the medicine through the Tamil Nadu Health Services Corporation. They told us they will let us know two days before the medicines are due to arrive. My son is getting free medication, he said.
Sujatha Jagadeesh, a geneticist associated with the foundation that also runs a multi-speciality clinic for the children, recalled that in 2017 an expert committee was set up to study the needs of the children with rare diseases and to further set up a dedicated a centre of excellence for rare disorders in the Institute of Child Health. A screening was also done for the same. Moreover, eleven of the 25 children were found to be eligible for treatment two years ago.
Not only identification, but the dashboard should also be periodically updated, added Dr. Suresh. The alternative is to create a national fund so that CSR [Corporate social responsibility] can be also brought in. This will help to improve the quality of life of these children. A child undergoing treatment requires 40,000 to 1 lakh per month. We are talking about LSD. There are many more who remain undiagnosed and several more rare diseases, he said.
Apart from medication, the children also require periodic medical investigation. It is an eternal expense for the parents. Many dont live in Chennai, and this means travel expenses and a loss of wages too, Dr. Sujatha added.