We all got really excited last year when India implemented a new plan to benefit rare disease patients. It was called the National Rare Disease Policy. Basically, it put 12.86 million dollars aside to go toward getting rare disease patients the treatment they needed. Unfortunately, it’s just come to light that this policy never actually went into effect.
There are an upwards of 96 million people living with a rare diagnosis in India. Rare disease risk is higher in India than it is in other parts of the world. However, there are no drug manufacturers for rare diseases in the country. That means that all treatments have to be imported from other nations. This transportation only adds to the already exponential cost of the drugs.
Some of the treatments for rare diseases cost over 200,000 dollars annually per patient. Most people can’t afford that on their own. In places like the United States, most insurance companies cover FDA approved drugs. In other countries, like Peru, Malaysia, and Egypt for example, the government helps to cover the cost.
The Indian government saw they needed to make a change and had a reasonable plan in place for improvement. Their solution was to have the national government cover 60% of treatment costs. They then would make the state governments in charge of the remaining 40%.
Talk is all well and good. A plan is even better. But if nothing is actually implemented, there’s no real good being done. For rare disease patients, there isn’t time to just wait around and see if things may be improved in the future. Every day without treatment is a step in the wrong direction for patients.
In sum, rare disease research does no good if the actual patients aren’t able to access to the new developments.
But, now that the cats out of the bag in terms of India’s halt in progress, hopefully things will begin moving in the right direction again.
You can read the full story on India’s approach to rare disease here and the plan that they had made for improvements.