Patients lose lives as the policy on rare diseases awaits actionable steps
By Ashok Agarwal
Until recently, healthcare was not really that high on the priority list of the Indian government. However, with initiatives like Ayushman Bharat-National Health Protection Mission (Pradhan Mantri Jan Arogya Yojana), it has spearheaded the development of a framework for a focused programme that would deal with the various healthcare needs of patients. What needs special mention here is the National Policy for Treatment of Rare Diseases, which was approved and finalised by the ministry of health and family welfare last year.
Owing to the fact that they are uncommon and affect lesser number of people, rare diseases were never considered a public health priority. But with the national policy presented in the Delhi High Court in May last year, the subject of rare diseases is now a part of the national health agenda. An intervention at the policy level for rare diseases was required because of two reasons. One, rare diseases are often life-threatening and debilitating, leaving the patients unable to do simple tasks. Two, the transformative value of the treatment impacts the prices of rare disease medicines, thereby being inaccessible.
As a social jurist who is concerned about the issue of right to health, I strongly feel that the policy is a landmark step and will help in providing relief to rare disease patients. However, it is quite unfortunate that, despite the importance and the need, the policy is yet to see the light of day. The central government, after introducing the policy, has not taken any concrete actions to implement it in the over 72 weeks that have passed since. In this delay, the patients and their families are suffering the most—a lot of patients have already lost their lives, awaiting treatment.
The policy recommended the setting up of a Central Technical Committee (CTC) and individual State Technical Committees (STCs) for management of and release of corpus funds, and identification and treatment of rare disease patients. It is worthwhile to note here that while the STCs have been formed in some of the states and they have identified patients for treatment, the CTC has failed to process any of the applications. The government was supposed to come up with guidelines to give a structure to the processing of applications and providing treatment. These guidelines have not been formed, leaving the patients clueless. This is a clear case of laxity on the part of the government.
Moreover, the process of getting the treatment is too complicated. A patient first has to apply to the rare disease cell directly or through a designated state health hospital. The hospital then forwards the application to the STC, which, in turn, gives it to the CTC after necessary reviews. Once the CTC approves it, the funds are released to the designated hospital under the programme implementation plan (PIP)—60:40 ratio—which can then start the treatment. This kind of tedious process only adds more burden. To make the process simpler, the government should recommend the setting up of a single designated centre in each state/city where rare disease patients can avail of treatment, like it has been done in the case of haemophilia.
Under the policy, a Rs 100 crore corpus fund (60% of the contribution in this fund would be made by the central government, and 40% by individual state governments) was set up for treatment of rare diseases. However, it is disheartening that this fund remains unutilised till date. The Delhi High Court, time and again, reiterated upon the timely allocation of this fund and now the amount has lapsed with the end of the last financial year. It is discouraging to know that an aspect like this, which required to be implemented on an immediate basis, was not deemed significant.
Agreed that, with every policy, the implementation takes time. However, it is incomprehensible that the central government that had initiated the policy is now not showcasing urgency in implementing it. It has left patients in the lurch. People, mostly children, have lost lives and are continuing to lose lives, and it is high time for the government to realise that every life is precious.
The author is a social jurist based in Delhi. Views are personal