Budget insufficient to treat rare diseases: AIIMS to HC

New Delhi, March 21

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The All India Institute of Medical Sciences (AIIMS) has told the Delhi High Court that its non-plan budget is only sufficient to procure commonly-used and emergency medical items and not for getting medicines for treatment of rare diseases.

AIIMS submitted in the court that it is “constrained by time and budget to adhere to principle of maximum good for maximum people” as per which it procures and provides all items of highly-used and emergency care for common ailments.

“It is not possible, given current budgetary constraints, to include treatment of specific and rare diseases in this list as the non-plan budget of the hospital were only sufficient to ensure procurement of commonly-used and emergency items,” it has said in an affidavit.

The affidavit, placed before Justice Rajiv Shakdher, came in response to a plea for free treatment to a street vendor’s two-year-old son suffering from a rare genetic disorder, “Gaucher’s disease”, treatment for which costs Rs 4.75 lakh per month.

The disease is a rare lysosomal storage disorder wherein the body cannot process fat resulting in accumulation of fat around vital organs of the body.

AIIMS has said it will provide every possible treatment to the child and will abide all directions of the court in this regard. In its affidavit, AIIMS has said a maximum of Rs 3,000 is provided as financial assistance from ‘AIIMS poor fund account’ to those in need and said the sum was relevant for OPD patients.

Where requirement is more than Rs 3,000 and the patient is genuinely poor to afford treatment, other options like Delhi Arogya Kosh, Rashtriya Arogya Nidhi, the Health Minister’s Discretionary Grant, the Prime Minister’s and the Chief Minister’s Relief Funds were available, it said.

In emergency/casualty wards, all patients were provided all requisite treatment, including costly medicines and surgical items, and in case of poor patients, stents and implants were given free of cost, if required as an emergency measure, the hospital said.

AIIMS, in its affidavit, has given various suggestions like hospitals having a separate “CSR or charitable entity account” for receiving donations or the Central Government providing extra credit to those who donate to the health sector.

It has also suggested that the Delhi Government can put up a list on its website of the “drugs, implants and devices which are excluded from its budget and for which donations would be welcome”.

It has also suggested creation of a inter-disciplinary high-powered panel to develop and update list of guiding principles in the area of donation in healthcare to make a policy for tackling rare diseases and promoting development of orphan drugs and for evolving new and innovative methods for attracting spending in the health sector. AIIMS has also suggested creation of a “revolving fund” for recurring expenditure of patients suffering from chronic and rare diseases. It has submitted in its affidavit that it is preparing standard operating procedures for availing financial assistance for poor patients and it shall soon be made available.

The child’s father, Vikas Sahu, moved the court saying he cannot not afford the enzyme replacement therapy (ERT) treatment costing Rs 4.75 lakh per month as he earns only Rs 3,000 per month and is the sole earner in the family.

Apart from the genetic disorder, the child is also suffering from various other ailments, including anaemia, the petition, filed through advocate Ashok Aggarwal, has said. — PTI