State Govt Runs Out Of Funding Under National Rare Diseases Policy; Companies Hesitant To Help Because Of CSR Norms
Nawajuddhin turned 3-year-old on August 4. He suffers from a rare condition called Gaucher Disease and has been left without the lifesaving treatment — Enzyme Replacement Therapy (ERT) — for 10 months as the state has run out of funding under the National Rare Diseases Policy.
The child’s father, Rafiq Ansari, a rickshaw mechanic in Nadiad, rues, “His liver is bloated and so is his stomach. He has stopped playing and even walking now.
I wonder how long my boy will survive without his medication.”
Similarly, Faizanali Fakir, who also is a patient of Gaucher Disease, turned five on June 22, 2022, but he hasn’t yet been admitted to a school because of his deteriorating condition. His mother Asma Fakir said, “I wanted to admit him in a school this year but his condition has worsened without medicines. No food stays in his stomach. It passes through him within minutes and the nearest school is 30 minutes away. I fear what would happen if there’s an emergency and I can’t reach him on time.”
Nawajuddin and Faizanali are among at least 24 children in Gujarat, who are suffering from various Group-3 rare diseases and need medical treatment running into Rs 30 lakh per year.
While the Centre in the National Rare Disease Policy (NRDP 2021) designated eight Centres of Excellence (CoE) to treat such children, the funding of their treatment was left to the mercy of donations from the public. The number of patients registered with the eight CoE hospitals has risen from 245 to 343 since March 2022, but the donation has risen from Rs 1.16 lakh in March to just Rs1.77 lakh in August, not enough to treat even a single patient.
Speaking about Nawajuddin’s health, Dr Bhavin Shah of Shaishav Hospital in Nadiad, said, “The patient has worsened considerably without ERT. We are seeking help from a pharmaceutical company but others patients also need immediate aid.”
Parents of these children have repeatedly run to the health department in Gandhinagar and KEM Hospital in Mumbai in a bid to seek help, but have returned home hopeless and helpless each time.
NHM Gujarat seeks CSR funding, but in vain
Gujarat’s National Health Mission sought help from the Gujarat Corporate Social Responsibility Authority (GCSRA) to find institutional funding for the treatment of these children but it was in vain. An NHM official said, “We hope GCSRA can help secure funding.”
GCSRA officials said they had approached at least 25 public and private sector companies but none of them have made a commitment till date to fund children’s treatment.
Why are companies not coming forward?
An official explained, “The impact assessment clause in Rule 8(3) of the Companies (CSR Policy) Rules (2014), is likely making companies hesitant about donating to these children. How can you have an impact assessment on human life when donating to medical treatment? It would help if this clause is revised to exempt healthcare from impact assessment.”
Treatment under GoI’s Rs 50 lakh funding delayed
The GoI on May 19, 2022, announced Rs 50 lakh funding for all patients of rare diseases irrespective of economic condition. However, the treatment under the grant at the Centres of Excellence is yet to start as the GoI announced the procedural details, to claim treatment, only on August 11.
Jafar Rangrej from Dahod, whose 3-year-old son Ahmedhusen also suffers from Gaucher disease, said, “Running around to Gandhinagar and Mumbai has been utterly fruitless. The central government announced Rs 50 lakh for all patients two months ago but still his treatment has not begun. His condition is deteriorating but nobody is listening
to us.”
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