Last month, the State Administration released a report on the cost of rare diseases. This report is interesting, and very interesting in Appendix 1 which contains a list of cost studies of the most common diseases of the 50 diseases. Below are some of the main ones:
At present, there is no cure or cure for chronic illness. Although the government recommends the development of drugs for treatment, there are FDA-approved drugs for about 5 percent of rare diseases … and rare diseases if a doctor prescribes them (which they would not want to do without clear evidence of the patient’s condition) and, if informed, would not be covered by insurance. .
The above-mentioned incentives include the Orphan Drug Act (ODA). ODA provides tax credit and advertising rights (in addition to non-essential medicines) to promote the development of essential medicines.
Diagnosis with rare diseases is often difficult.
… Because there is no cure for a serious illness, their testing cannot be considered to affect health outcomes and, as a result, cannot be paid by other insurance companies on the grounds that “it is not medically necessary.” For example, the sequence of all types of exomes – a method for detecting genetic variation in gene expression – has been shown to be effective in diagnosing genetic disorders, but insurance companies do not hide their use.
The value proposition confirms the importance of the disease-related approach in terms of how new information provided by the disease can change clinical practice and ultimately health outcomes. However, patients themselves can be very valuable in knowing that they have a specific disease. Lakdawalla et al. (2018) calls this “The Importance of Reducing Uncertainty by New Cognition”. Among other things because diagnostic tests are not performed, the majority of patients with rare cases go to 4.2 PCPs, 4.8 specialists, go to the emergency room 3.7 times and are hospitalized 1.7 times for reasons related to their illness. not yet found. Some of the complications associated with the disease are illustrated in this figure.
Not surprisingly, the cost of treating dementia is high. One summary or cost of dementia is The National Economic Burden of Rare Disease Study, which found that the annual economic growth rate of chronic illness was $ 966 billion.
The variability in the cost of rare diseases depends on a number of factors, as outlined in the table below.
Read the full report to learn more.