Recently, the realm of rare diseases has come to the fore with the National Policy for Treatment of Rare Diseases being approved by the ministry of health & family welfare. Considering a consistent rise in population and the burden of healthcare infrastructure, treatment and management of rare diseases has remained one of the lesser explored subjects in public health domain in India. However, with the increasing role of patient support groups and awareness around the treatment and their outcomes, fortunately, things have started to change.
Rare diseases basically comprise of health conditions that are relatively low in a population as compared to other prevalent diseases. But given the huge population of the country, the incidence of rare diseases is likely to be higher in India. While having any rare disease means an extremely painful life, patients suffering from a particular segment of rare diseases called Lysosomal Storage Disorders (LSDs) like MPS (type I, II, III, IV & VI), Gaucher, Pompe, Fabry, etc, are more likely to lead a incapacitating life. The treatment being available for only a handful of LSDs are out of reach for most patients due to its cost which makes the situation much worse. However, the good news is that the treatment available has proved to be very successful and has positively impacted the life of a patient.
This is what makes it important to have a focused and channelised discourse on the various aspects pertaining to its diagnosis, treatment, availability of patient support in public health domain and initiatives at policy levels to improve access to better and affordable treatment options. The recommendation of setting up of a Rs 100 crore corpus is of particular importance, and would definitely help in making the treatment more accessible and affordable for patients. As of now, 60% of the contribution in this fund would be made by the central government and 40% by individual state governments. The policy is yet to have more defined guidelines in terms of eligibility criteria for the patient, coordination between centre and state at the implementation level and strategies which could ensure smooth patient care.
The need of the hour is for the governments to start the process of setting up this fund. Efforts need to be directed in forming separate account in the MoH&FW itself. A committee consisting of officials from medical and finance departments would help in the process of monitoring, allocating and transferring requisite funds to a government hospital like AIIMS.
Moreover, the patients to get treatment can be recommended by another sub-committee set by the health ministry. One of the aspects in the National policy is the creation of a web portal wherein patients can apply to receive treatment. A swifter way can be to collect patient data which is already available from different hospitals, centers, and physicians. Post this, the medical committee can review each case according to the severity of the disease or priority of need of treatment according to a patient’s medical papers and recommend patients without bias.
To make it more efficient, the process should be centralised and not be spread across different states. Besides, the states’ contribution to the corpus fund can be deducted from their individual health budgets at the time of the allocation itself. It is true that there would be many teething issues for the setting up of the corpus, but within a year of being created, the implementation would be much smoother and easier. Gradually, the centre can transfer its 60% share to the state and thereon, it can work independently with its nodal government hospital.
For a country like India, grappling with a significant burden of rare diseases, the Rs 100 crore fund is a huge and laudable step.To ensure the effectiveness of the initiative, it is important to identify and plug the gaps across policy landscape right at the beginning. The idea is to have a patient-friendly programme wherein despite having the involvement of centre and the state governments, patient care remains a priority.
By Manjit Singh