Rare Disease India Foundation writes to Centre for funds

Seven months since it was up and running, the portal (nhp.gov.in) has so far received a total donation of only ₹11.58 lakh.

Mumbai: Every year, parents of nine-year-old Sairaj Barse, who suffers from Mucopolysaccharidosis type I (MPS I) -- a rare genetic disorder that affects both physical and mental development and can cause organ damage -- need ₹51 lakh for his treatment. On February 25, his father Krishna, a bus conductor with the Maharashtra State Road Transport Corporation (MSRTC), visited Mumbai’s largest civic-run KEM hospital that houses the centre for rare diseases, with the hope of registering his son on the government of India’s crowdfunding portal for rare disease patients that was launched in August 2021.

Manjit Singh, president of the Lysosomal Storage Disorders Support Society (LSDSS) said funds received at the portal is insufficient for the treatment of even one patient. (HT PHOTO)

Krishna returned home with no success because registration on the portal requires fresh investigations that cost anywhere between ₹60,000-70,000. There are currently 237 patients with rare diseases who are struggling to get funds from the portal that was created to pay for their treatment.

Seven months since it was up and running, the portal (nhp.gov.in) has so far received a total donation of only ₹11.58 lakh.

Last week, the Rare Disease India Foundation (RDIF) wrote to the union health minister seeking immediate attention on the struggle in getting treatment. Among the few suggestions, RDIF has suggested a national programme on rare diseases with a budgetary allocation of at least ₹150 crore.

“There is a huge gap in providing life-saving treatment to the patients diagnosed with rare, genetic conditions. In the absence of any government support for treatment, several patients --- mostly children – have lost their lives in the interim period,” said Saurabh Singh, RDIF director.

“The lack of immediate funding support for treatment of eligible patients with treatable conditions may result in death for many others.”

Manjit Singh, president of the Lysosomal Storage Disorders Support Society (LSDSS) said funds received at the portal is insufficient for the treatment of even one patient. “On average, a rare disease patient requires medicines worth ₹7-8 lakhs. So far, the portal has not been beneficial or serving the purpose,” he said.

Singh, who has lost his two sons to LSD, said instead of the portal, the government should think of allowing CSR funds for rare diseases treatment.

“We urge the government to make a mandatory contribution to the CSR schedule of the Income Tax Act. People can donate and get tax benefits and we will have enough funds for the treatment of the rare disease,” he said.

Speaking to HT, a doctor treating patients with rare diseases at KEM hospital, Parel, which is one of the eight institutions identified by the Centre to treat rare diseases, said, “Our patients try to manage funds via NGOs, through state government or their employers. We also speak to the pharmaceutical companies who many times oblige with providing medicines via their charitable programme. For some patients, the monthly treatment expenses can go close to ₹1 to 2 crore.”

As per estimates compiled by patient support groups, there are currently 34 known rare diseases patients in Maharashtra and similar stories of struggle that the Barse’s face play out in every family.

Seeking the attention of the government, Krishna said Sairaj is an intelligent child. “He can live a normal life if he gets the required medicines, which I am unable to afford. His condition has been deteriorating and I am helpless. Since the time he has been diagnosed, we have managed to give him medicine for four months each in 2018 and 2019,” said Krishna.