India first drafted a national rare disease policy back in 2017. Unfortunately, it was never enacted due to budgeting and implementation issues. This draft included suggestions such as a corpus fund which would put Rs 100 crore (close to $14 million USD) toward treating rare diseases.
Thankfully, this draft was not forgotten after it was suspended. A revised version has just been released by the Union Health Ministry. However, even with its revisions, not everyone is satisfied with the new proposal.
The New Draft
The new proposed policy categorizes rare diseases into three different groups. This distinction is what most advocates are having qualms about. The first category is rare diseases which could be cured with a one time treatment. This includes diseases such as tyrosinemia, maple syrup urine disease, Fabry’s disease, and some immune deficiency disorders. The second category includes conditions which require life long treatment. The third category is for diseases that necessitate lifelong supportive care.
The problem is, the new draft says that the first category should be prioritized over all others because it would be a smaller burden in terms of finances to aid these patients. One-time treatments range in costs from Rs 5 to Rs 20 lakh. The proposal is to give category 1 patients up to Rs 15 lakh for their curative care.
In addition to curative care, a registry will be created under this new policy. The Indian Council of Medical Research will be in charge of this implementation. Finally, under this policy, specific medical centers will be explicitly categorized as Centres of Excellence for Rare Diseases.
Pushback
Of course, this is wonderful news for patients who need a one-time treatment in that cost range. The issue is not about eliminating this part of the proposal (though there is push to make the ceiling funding amount flexible). Advocates are simply sending pleas to add on support for the other categories of patients.
Those suffering from conditions such as Hurler syndrome, Wolman disease, Gaucher’s disease, and others require long-term care. Their financial burden may range from Rs 10 lakh to over Rs 1 crore each year. What is the governments solution for these patients? They must have thought of something right?
Their proposed plan for this category of patients is to create a digital platform where individuals and corporations can choose to donate. It’s a crowd funding mechanism which has no guarantees. So while some rare disease patients will be fully supported by the government under this new proposal, the vast majority (those whose one time treatment costs more than Rs 15 lakh or those who require long-term care) will live their lives as if no policy was ever enacted.
Sadly, not all rare diseases have a one time cure. It’s impossible to implement a satisfactory policy on rare disease if you are only supporting a small segment of the patient community. India’s new policy draft is undoubtedly a step in the right direction, but more amendments are needed in order to truly help the entire rare population.
You can read more about this new draft here.
