Rare Disease Patients in Uttar Pradesh Forced to Abandon Treatment Amid Funding Crisis

According to a publication from ET Healthworld, some 21 rare disease patients in India’s northern state of Uttar Pradesh are still awaiting governmental financial assistance to which they are legally entitled. As a result, they have been forced to interrupt their treatments — with sometimes fatal repercussions.

Rashtriya Arogya Nidhi (RAN) Program

RAN (Rashtriya Arogya Nidhi) is a financial assistance program offered through India’s Ministry of Health and Family Welfare. To qualify, participants must provide evidence of their income and a signed statement from a treating physician. “Revolving funds” are allocated to 13 Central Government-administrated hospitals and treatment facilities in installments of roughly $73,000 (though some larger centers receive up to ~$130,000).

Patients who qualify for the program are entitled to up to about $3,000 in assistance from one of the 13 facilities on a discretionary basis. However, many rare disease patients require assistance beyond that which can be provided through the hospital-allocated funding. People requiring over $3,000 of assistance are required to apply for aid directly from the Central Government, rather than on an as-needed basis from an authorized local institution. The result is a system with admirable intentions occasionally hamstrung by bureaucratic delays.

Because of the limited funding available for any hospital to distribute at any one time, sometimes no money is immediately available for those in need. Although the Central Government is expected to intervene in such cases, it has been slow to respond to the several patients in Uttar Pradesh who have been forced to forgo vital treatments. Other times, the Government is responsive, but the process of submitting an application for review can take more time than an at-risk rare disease patient has to spare.

Lives at Stake

As many as 7 have died while waiting for their governmental financial aid.

Dinesh Jaiswal is tailor from Uttar Pradesh. He is also the father of three children all diagnosed with mucopolysaccharidosis, a rare metabolic disease.

The Jaiswals had been receiving financial assistance from the state, but when funding ran dry months ago, Dinesh’s three children were some of those caught downwind. “It’s been more than 8 months since my children have stopped receiving treatment,” Jaiswal told ET Healthworld. “[Their] condition has been deteriorating day-by-day due to this delay.”

After a series of inquiries held this May, India’s Central Government ruled in favor of the patients and their families. The Uttar Pradesh government was ordered to provide small relief payments to those affected while the Central Government processes their applications for direct care under the Ministry of Health and Family Welfare.

Critics of the situation emphasize that preservation of life is more important than the paperwork involved, and have called for the Central and State Governments to resume treatment of affected children immediately.

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