I was curious about how the socio-economic costs for rare diseases are quantified and what the results show. This post is a summary of what I found.
First lets examine what constitutes cost for rare diseases. There are the direct costs that include – inpatient, outpatient and pharmaceutical costs. There are non-health care costs such as nonhospital medical care, domestic help, special facilities and medical equipment. And then there are productivity costs incurred by the patient and/or caregiver(s). Given the complexity of what is deemed a rare disease(estimates say there are between 6800-7000 different rare diseases), the vast differences in healthcare costs by country and the complexity in quantifying one or more of these costs, it comes as no surprise that there is very little data on this topic. But let’s review what we do have.
A 2014 European study collated data from existing studies to do this estimation for 10 rare diseases. It summarized annual total cost as being in a range from 1,320 – 480,000 USD(depending on the disease in question). Total cost here do not always include direct and indirect costs given there are significant data gaps. It also does not account for productivity costs.
A 2020 article in the Time cited vastly different figures for the indirect and productivity costs. It pegged the lifetime value of a working individual at $7-9 million and lifetime cost of full-time care at $3 million – together adding up to $10-12 million for each person suffering from a rare disease. There are no estimates on how many of the 475 million people suffering from rare diseases globally, will need full-time care or be unable to work. But even at a fraction of that number, the costs incurred would add up quite quickly.
I’ll update these numbers as and when I find new data that shows clearer assessment of the economic costs.