Concerned over the 'delay' in the implementation of a national policy for treatment of rare diseases, patient advocacy groups have appealed to the Union Health Ministry to come up with an immediate interim arrangement to support treatment of patients diagnosed with such ailments.
Organization for Rare Disease India (ORDI) and Lysosomal Storage Disorder Support Society (LSDSS) have written to Union Health minister Harsh Vardhan asking him to provide an interim assistance till the National Policy Treatment of Rare Diseases (NPTRD) is formulated.
Vardhan recently directed ministry officials to expedite the process of formulating the NPTRD.
The policy was announced by the government in 2017 with a corpus of Rs 100 crore to provide financial aid for treatment of patients suffering from rare ailments.
However, in November last year, the health ministry put the policy and the corpus on hold, saying the focus was currently on communicable and non-communicable diseases.
Since then, there have been several representations to the central government from organisations including LSDSSI seeking reinstatement of the policy and funds to support patients.
Rare diseases are severe and chronic illnesses and are often life-threatening. Patients suffering from rare diseases, especially Lysosomal Storage Disorders (LSDs), often lead a very incapacitating life.
There are about 50 LSDs out of which only five have approved treatment options available in India.
Highlighting the government's priority to ensure healthcare for all, LSDSS said in its letter said that close to 190 patients, majority of them suffering from LSDs, sought support for treatment under the provisions of the earlier policy (which is now kept in abeyance).
"All these patients have been medically evaluated by the respective state technical committees and are eligible for funding for their treatment. Unfortunately, their hopes of any support for treatment have diminished, and are left with no tangible option.
"On behalf of all these patients, we would like to make a fervent appeal to you to make immediate interim arrangement till the policy formulation process is over for these group of patients so that they can continue with their treatment," the letter stated.
In an another letter, ORDI said, "As directed by the ministry of health earlier, more than 150-180 patients had applied for treatment support to the rare diseases cell and are eagerly looking forward to a positive immediate action from the ministry."
There are over 8,000 patients with rare diseases, which includes genetic disorders like Hunter Syndrome, Gaucher Disease and Fabry's Disease, in the country.
According to the health advocacy groups fighting for the cause of rare diseases in India, the cost of medicines for such diseases range anywhere between Rs 1 lakh to Rs 50 lakh per month.
As a response to the appeal, the patient groups claimed that they have received a non-committal response from the Health Ministry with no mention of interim support to the patients. These patients had already applied for treatment support to the rare disease cell of the ministry, till the policy is finalised, they said.
Manjit Singh, President, LSDSS said, "More than seven months have passed since the Delhi High Court allowed the Central government to reframe the NPTRD within nine months (which itself is very well prepared by medical experts and easily implementable).
"Meanwhile, the Judiciary ordered the Health Ministry to provide the Interim treatment to 200 odd patients whose approved applications are pending with them. But see the height of callousness and indifferent approach of officials that they have not done anything till date. Nor they have come up with the reframed policy. Sadly, we are losing about five patients every month to these dreaded disorders in the absence of timely treatment."
The announcement of NPTRD in May 2017 had raised immense hopes within the patients and their families, but the ministry took an inexplicable 'U Turn' on the policy, Prasanna Shirol, Co-Founder of ORDI said.
"Given this situation, every day delay in finalizing the NPTRD means unwanted agony and trauma for patients and their families - as well as unfortunate deaths occurring during this period. All we are requesting is for an interim treatment support to the children who had applied," Shirol said.
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