Giacomo Chiesi, Head of Chiesi Global Rare Diseases and co-author of the report “Rare Disease Burden of Care and the Economic Impact of Citizens in Germany, France, and Italy“, discusses report in detail.
There are an estimated 35-36 million people affected by a rare disease in Europe. Mr. Chiesi believes that the impact of rare diseases is a societal issue as well as a medical challenge. As Mr. Chiesi states, around 95% of rare diseases do not have an approved therapy. Therefore, one of their main goals is to increase the awareness of rare diseases and the economic burden on patients.
The Study
The study focused on rare disease cost and economic impact on European citizens. Twenty-three rare diseases were selected with an initial sample from Germany, France, and Italy. The criteria for the selected diseases and areas of focus included:
- the degree of a met need
- the relative importance of patient advocacy groups
- how well these diseases are known
- the interest in the scientific community
- the prevalence
- and the burden of the disease
As Mr. Chiesi explains, the economic burden of each disease was evaluated based on direct, indirect, and mortality-related costs as compared to more prevalent diseases. A comparison was also made between diseases where treatment exists and diseases with no current treatment options.
Results
The study revealed that the average cost of burden per patient per year across the 23 diseases studied was about €107,000. This cost is about 15 times the average annual cost per patient of €7,000 for more common diseases. Additionally, it was discovered that in the absence of treatment options, this annual cost increases by about 28%.
Mr. Chiesi also discusses Europe’s tendency to be behind the United States and Canada when it comes to developing treatments, emphasizing the necessity for accelerated rare disease treatment approvals, due to the increased economic burden created for patients otherwise.
Another report by Chiesi Global Rare Diseases looking at U.S. data showed similar trends, with the cost for rare diseases being 10 times higher than the average costs for managing common diseases.
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