Rare disease patients wait for justice as advocacy groups launch legal battle to bring solace to sufferers

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Orphan disease patients in the country who struggle to bear the hefty cost of treatment are pinning their hopes on a legal battle launched by patient rights advocates in the Supreme Court and the Delhi High Court to ensure government assistance for treatment and the immediate implementation of the national policy by reluctant states.

The decision to move the apex court was taken by Organisation for Rare Diseases India (ORDI) after numerous unsuccessful appeals to states to implement individual state policies as per directions of the national policy. “We filed the public interest litigation in the top court on October 13 to seek directions against all state and union territory governments to constitute state level technical committees, identify hospitals and provide healthcare support,” Ashok Agarwal, a Delhi-based lawyer who represented many rare disease patients in court, told Pharmabiz.

According to official sources, a Central Technical Committee (CTC) formed by the Centre has received more than 120 applications from various states for fund assistance. But no decision has been taken on these pleas as the responsibility to check such cases and offer treatment recommendations lies on respective state governments. Though the Union health ministry has directed the National Health Mission to handle matters related to rare diseases, there is no meaningful progress at the ground level as most states are yet to form technical panels to implement recommendations. “The guidelines drafted by the CTC are supposed to be submitted to the technical panels of states, which should then decide the funds to be allocated to patients. In the absence of state panels, this exercise won’t go forward,” a health activist said.

According to ORDI, the PIL is filed as all efforts to convince states have failed. “We had requested the state authorities concerned to constitute technical committees and nominate hospitals many times. Without the states’ active participation, this battle cannot be won,” ORDI Centre Coordinator Mausumi Sengupta says.

As of now, only a few states including Delhi, Karnataka and Tamil Nadu have adopted a proactive stance. While a rare disease board has been set up by the Delhi government to review patient, Tamil Nadu has established an exclusive diagnostic facility for sufferers.

Two other lawsuits, filed recently in the Delhi High Court, also offer a glimmer of hope for dejected orphan disease patients. Both are related to discrimination against patients above the poverty line (APL), again filed through Agarwal and his non-profit group Social Jurist. The court has sought the Centre and the state government’s stand on these two pleas, filed on behalf of a four-and-a-half-year-old girl suffering from mucopolysaccharidosis type 1, a rare lysosomal storage disease, and a 10-year-old girl affected by spinal muscular atrophy. The petitions seek national policy benefits for all patients, including those above the poverty line. The next hearing of these cases is on December 10.

The court’s ruling on these two cases assumes significance as lack of clarification over financial help to APL patients in the national policy is a major impediment to its state-level implementation. “Since insurance policies don’t cover these life-long expenses, APL-BPL differentiation is irrelevant in the case of rare diseases. Fund support by government or charities is the only hope,” co-founder and executive director of ORDI Prasanna Kumar Shirol opined.

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