Rare disease therapies have an exorbitant cost. Fewer patients means higher costs in order to support the development of treatments. In the United States, 966 billion was spent in 2019 on the treatment and care for rare disease patients. The catch is, this was just the price for 379 conditions. In total, there are over 7,000 known rare diseases.

Imagine if we had treatments for all of these conditions. Incredible, but expensive.

However, it’s not just therapies that cost money for rare disease patients. The indirect costs of living with a rare disease are often just as, if not more, burdensome.

The Study

These findings were uncovered by the National Economic Burden of Rare Disease Study. You can read the full study here. The final results were published just before Rare Disease Day (Feb 28th), on Feb 25th, 2020.

In this investigation, researchers examined both the direct and indirect cost of rare disease therapies on those who are living with a rare condition day to day in the United States. In total, they followed 1,399 patients. Direct costs included medical costs and indirect costs included a wide array of areas such as the loss of productivity and ability to work.

Researchers documented that indirect costs were some of the biggest burdens. For instance, not being able to function to their full capacity in work encompassed 138 billion dollars over the course of 2019. Absenteeism was also a major factor, accounting for 149 billion dollars during the year. Lastly, forced retirement accounted for 136 billion dollars during the year.

In regards to direct medical costs, inpatient as well as outpatient care were a huge component of the total cost burden. Inpatient care equated to 143 billion annually. Outpatient care equated to 62 billion annually. Additionally, prescriptions (both generally, as well as administration during outpatient care), led to 96 billion dollars in expenditures.

 You can read more about this issue, as well as more information about this particular study here.