Centre Announces ‘One-Time' Financial Assistance For Rare Disease Patients, Activists Calls It An Eyewash

One year after the Centre had announced Rs 100 crore special fund for the children suffering from rare disease under National Policy on Treatment of Rare Diseases (NPTRD), this December, the Centre taking a u-turn informed the court that no allocation had been done under the policy. However, after receiving a huge criticism on backtracking from its promise, the Centre on January 4 announced ‘one-time financial assistance’ for the children suffering from rare diseases but hasn’t specified any amount. Activists who are working for the cause called the government move an “eyewash”.

Government has put the policy in suspension

According to The Indian Express, previously, the Centre informed a bench of Justice Manmohan that they would reframe the policy again. The Ministry of Health and Family Welfare said that the policy that was formed a year ago was formed without proper consultation. Adding to it, Centre said that health is a state subject and the centre did not take any agreement from most of the states before framing their policy, which is why they would like to re-think about the policy.

The government had told the court that it would take some interim measures till the time policy is being framed. The next hearing is to be scheduled on February 8, 2019. In the meantime, a committee has also been set up to look into the policy. On December 10, last year, the health ministry had put out a notification saying that a 10-member committee has been formed to draft a revised policy. However, no meeting of the committee has taken place till now.

Meanwhile, the Union health minister J P Nadda, while replying to a question in the Lok Sabha, said, “Ad-interim, the standing finance committee has approved a proposal for adding a sub-component under the umbrella scheme of Rashtriya Arogya Nidhi (RAN) for provision of one-time financial assistance to those below threshold poverty line for specified rare diseases which require one-time treatment.” However, the minister did not specify any amount that would be allocated for the policy.

It is to eyewash people

The Logical Indian spoke to Organization For Rare Diseases India (ORDI) founder Prasanna Kumar B Shirol and he said that ‘one-time financial assistance’ is not a solution at all and that is the reason, the ORDI had requested for a rare disease policy.

He said, “All these rare diseases are progressive in nature, and multiple organs are involved in it. It is not one time diseases like cancer or any other disease in which you conduct an operation and get over it. For rare diseases, main medicine has to be there if in case it is available in the world. If not, the patient mostly has to be treated for the lifetime.”

He added that the government’s one-time financial assistance could be only helpful in some rare diseases like may be in bone marrow transplantation, as it can be done in Rs 30-35 lakhs and requires only a transplant. But, 99% of rare diseases cannot be cured in one-time treatment.

Disease does not happen to BPL holders

While talking about the minister’s comment on ‘below threshold poverty line’ Prasanna said, “When the policy came, there was no BPL and Above poverty line (APL) clause mentioned in it.”

He added that this provision does not make sense as a person above the poverty line also cannot afford the treatment for these rare diseases. In many rare diseases, the treatment is life long. It is not just difficult for the economically weaker section to afford the treatment, but it is difficult for all sections of society, told Mr Prasanna.

He also added that not having a policy is in violation of constitutional rights for the people. “It is a violation of our right to health and how can the government differentiate between BPL and APL in this.”

What is a rare disease?

Rare disease refers to health conditions with an occurrence of less than one in 2,000. These rare diseases include genetic diseases, rare types of cancers, tropical infectious diseases and degenerative diseases that are often chronic and life-threatening, in some cases these degenerative disease result in some form of handicap.

Almost 70 million patients are affected by the rare disease in India. Many suffer from conditions like thalassemia, sickle-cell anaemia, Pompe disease and Gaucher’s disease, but they can not afford the treatment for the same as it costs from Rs 15 lakh to over Rs 1 crore a year. There are at least 7000 known rare diseases and every year new diseases are discovered and are added to the databases.

Also Read: Centre Takes U-Turn, Says No Fund Allocated For Rare Diseases After Promising Rs 100 Crore For It