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SC asks petitioner to approach Centre for treatment expenses under Rare Diseases policy
The court directed the woman to approach the Centre after coming across a news report that talked about over ₹62 crore getting added to the fund under the National Policy for Rare Diseases 2021
New Delhi: The Supreme Court on Monday directed a woman seeking financial assistance for her husband’s lung transplant to approach the Centre under the National Policy for Rare Diseases 2021 after coming across a news report that talked about a huge sum of over ₹62 crore getting added to the fund under the new policy. This money was reportedly collected as part of a crowd-funding exercise to save a Kerala toddler, suffering from a rare condition, who died recently.
The news report that appeared on Monday in leading newspapers caught the attention of the court, which was dealing with the issue of a 31-year-old woman Sheela Mehra hailing from Madhya Pradesh. She approached the court seeking a sum of ₹1 crore to treat her husband, who required a daily expense of ₹1.5 lakh to sustain on an artificial lung-support machine called ECMO (extracorporeal membrane oxygenation) at Secunderabad-based Krishna Institute of Medical Sciences Limited (KIMS). There was a huge outstanding amount of ₹14 lakh to be paid to the hospital and the woman had already spent close to ₹1 crore on her husband’s treatment.
The bench of Justices L Nageswara Rao and BR Gavai said, “You (petitioner) can apply under the policy (National Policy for Rare Diseases). We have read it in the newspapers that one boy was in need of finances after a petition for him was being considered by the Kerala High Court. Around ₹62 crore was collected but the boy died. This money is now to be transferred to this fund under the National Policy (for Rare Diseases). We can allow you to file representation. Let the Government consider.”
The bench was referring to a report with regard to a toddler in Kerala who suffered a rare disease called spinal muscular atrophy for which he frequently required an expensive injection of ₹18 crore. The news led to people contributing generously for the cause. After nearly ₹64 crore was collected, the boy died. Later, a petition was filed by a 41-year old woman, who suffered a rare illness, seeking part of the money collected for the toddler, which was to become part of the fund under the National Policy for Rare Diseases. It was this news that was reported in newspapers on Monday.
The petitioner’s lawyer Mukesh Kumar informed the court that already a representation has been moved before the Centre and the MP government based on which the petitioner was allocated ₹3 lakh under the PM CARES fund and ₹2 lakh from the Madhya Pradesh Chief Minister Relief Fund. However, the petitioner still needed ₹55 lakh for conducting a lung transplant for her husband Manish Kumar Gohiya whose lungs suffered 100% damage after contracting Covid-19 in May this year.
The bench directed a fresh representation to be moved under the 2021 policy to the Centre, PM CARES fund, PM Relief Fund, Madhya Pradesh government and MP Chief Minister Relief Fund. The court directed the concerned authorities to deal with the representation by passing necessary orders.
The petitioner also sought an order from court for immediate release of ₹3 lakh from PM CARES as the disbursal was expected to take about three months. The bench remarked, “We will not pass such an order. It is not that the Government has so much of money that they can distribute to all. We know the condition of several other people suffering in this country.”
In order to help the petitioner, the court had last week asked the hospital KIMS to be generous and specify if some amount could be waived off.
On Monday, advocate M Shrinivas Rao, appearing for KIMS, told the court that the hospital had agreed to provide a 15% waiver on the total outstanding amount. The bench observed, “You are running such a big hospital. What will this 15% be? Anyway, we will not hold anything against you. We will allow the petitioner to file a representation to you (hospital).”
“There is a possibility that the petitioner’s husband could be wheeled out of ECMO. Doctors will be taking a call on it tomorrow since the patient’s condition is improving,” the hospital informed the court. When the bench wished to know if the patient does not require lung transplant, the counsel for KIMS said, “In this sort of condition, we do not know whether a person’s condition improves or deteriorates.”
After being diagnosed with Covid-19 during the second wave of the pandemic, Gohiya was admitted at All India Institute of Medical Sciences, Bhopal on May 14. He was later shifted in an air ambulance on June 2 to Hyderabad-based Yashoda Hospital where a CT scan revealed that his lungs had suffered 100% damage. He required ECMO machine to survive and the only hospital having this machine was KIMS Hospital. He was shifted to KIMS on July 7.
