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Abstract
The absence of adequate national strategies for rare diseases (RD), high medicines prices and insufficient experts’ knowledge creates to the barriers in therapy, as well as the added factors of inappropriate diagnostics and difficulties in peoples’ access to health care. A heavier burden is placed on patients’ physical, mental, psychological and intellectual wellbeing as well as on the financial capabilities of the third party payers. This study aims to analyze the financial flow for RD therapy as part of the health insurance budget and regional differences in their financing. The point of view is that of the third party payer for a 4-year period. The study is a macro costing top down financial analysis of the expenditures for medicines for rare diseases spent by the 3rd party payer, in Bulgaria that is the national health insurance fund (NHIF). Applied were financial and statistical analyses towards the budget data for expenditures for pharmaceuticals at national and regional level. Results show a constant rise in healthcare medicines expenditures, including those for rare diseases therapy from 20 to 27 million € for a three-year period but it is not above 10% from the budget for medicines due to regulatory restrictions. A variety of deviations exist among regional counties, accounting for more than 50% differences in payment per diagnosis. This could be explained with insufficient knowledge and lack of therapeutic standards. There is a need for collaboration on a European level and the creation of a global fund to be able to satisfy therapeutic needs. A closer look at national differences and regional therapy is necessary, as well as standardization of health care services for better health care expenditures management.
Highlights
Rare diseases (RD) have a potentially lethal exit, or are chronic highly debilitating diseases with limited spread and high degree of complexity [1]-[4]
This study aims to analyze the financial flow for RD therapy as part of the health insurance budget and regional differences in their financing
The study is a macro costing top down financial analysis of the expenditures for medicines for rare diseases spent by the 3rd party payer
Summary
Rare diseases (RD) have a potentially lethal exit, or are chronic highly debilitating diseases with limited spread and high degree of complexity [1]-[4]. Between 5000 and 8000 different rare diseases affect near 6% of the European population according to the current state of the art scientific knowledge [4]. Progressive and degenerative states, they leave patients handicapped for their entire life. Without therapy patients are destined to remain severely injured. In June 2000 the same organization established significant discrepancies in the financial and physical access to medicines. The latter was supported by other scientific works, especially in Central and East European Countries showing that the access to orphan medicines for rare diseases therapy is hampered [5]-[7]
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