Rare disease scheme: HC notice to govt to pay ₹80 lakh to AIIMS

Maitri Porecha New Delhi | Updated on January 16, 2020 Published on January 16, 2020

Patients suffering from rare diseases have been left high and dry with the C entre not being able to fund their treatment at AIIMS (file photo)   -  V_V_Krishnan

With payment pending, the hospital has stopped treatment of many patients

The Delhi High Court has issued a notice to the Ministry of Health and Family Welfare to release the pending payment of up to ₹80 lakh to the All India Institute of Medical Sciences (AIIMS) accrued over the past 13 months for the treatment cost of patients with rare diseases.

By a court order, the Ministry and AIIMS were directed to treat free of cost any patient afflicted with a rare disease and which has a cure in terms of drugs. AIIMS has till date treated patients by procuring Enzyme Replacement Therapy drugs running into ₹1 crore. However, the Ministry has paid up only ₹20 lakh to the hospital.

Patients suffering from rare diseases have been left high and dry with the Centre not being able to fund their treatment in AIIMS. AIIMS lawyers told the High Court that patients’ enzyme replacement treatment (ERT) has been put on a hold over outstanding payments from the Health Ministry for drugs.

Only ₹20 lakh has been received till date, AIIMS told the High Court. The court instructed the Centre to release the balance amount in four weeks.

The court was hearing the case filed by patients including Ayesha Begum, whose children Arshi and Ubed, suffering from Mucopolysaccharidosis I (MPS I), have not been receiving therapy since September last year.

Budget allocation, utilisation

Justice Navin Chawla also asked the government to provide its Budget allocation for the last five financial years and an affidavit of its Budget utilisation for the last financial year (till December 2019).

Patient groups are also unhappy with the draft rare diseases policy released by the Health Ministry that only proposes financial support of up to ₹15 lakh for one-time treatment. They said that it is important to note that rare diseases that require life-long expensive treatment ranging from ₹10 lakh to ₹1 crore annually will not be funded by the Centre.

“This raises the question why the rare diseases policy launched in 2017 was rolled back if improved measures were not to be announced. The draft policy states that only patients to whom the PM Jan Arogya Yojana provides cashless health cover of ₹5 lakh per annum per family can benefit from the revised policy,” said Manjit Singh, member of Lysosomal Storage Disorders Support Society (LSDSS).

In the 2017 policy, the Ministry had proposed a corpus of ₹100 crore for treatment.

Singh stated in the High Court that up to 280 patient applications for treatment support were pending with the government, and the government had now flipped its i stand.

Over 50 children had died during this period, said Gitanjali S, Founder, Families of Spinal Muscular Atrophy (India).

Draft policy

The new draft policy was released a day before the crucial hearing at the Delhi High Court on Tuesday. Justice Navin Chawla asked the petitioners if there was some way the draft policy could be challenged.

Shyel Trehan, advocate for the petitioners, responded that a reply will be framed after a meeting of different patient advocacy groups.

The court also questioned if any tax incentives would be given to people who donate money, hinting at the crowd-funding platform clause mentioned in the draft policy. To this, the Ministry said that the normal tax benefits would apply and no special provisions have been listed till date.

Trehan also argued that the government’s proposal to crowd-fund treatment of individual patients was digitally impossible as it is cost intensive, ranging between ₹10 lakh and ₹1 crore for periods of one year to an entire lifetime.

To this, Justice Chawla asked how much money does one think the government should set aside to fund the treatment of rare diseases. The petitioner stated that the government has till date not allocated any fund.

Trehan mentioned how patients are currently dependent on the mercy of pharma companies such as Biogen which under its Indirect Relief Programme funds treatment for Type 1 Spinal Muscular Atrophy children diagnosed before six months of age. Similarly, Novartis, under its global programme, welcomes applications from patients under two years of age. Roche is also coming up with a compassionate usage programme.

Published on January 16, 2020
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