This New Program Can Help Make Life Easier for Rare Disease Patients

According to a story from CheckOrphan, Express Scripts has prepared a Rare Conditions Care Value (RCCV) program. This program is designed to help make the diagnosis and treatment process for rare disease patients easier, and include features such as Second Opinion, a support service that allows patients to receive guidance from rare disease experts on a case-by-case basis.
The overall lack of awareness about rare diseases combined with the fact that many of them display symptoms that could easily be confused with more common illnesses means that rare disease patients often face a challenging and lengthy diagnostic process. Getting the best treatment can also be a major source of consternation, and options can often be frustratingly limited.

This is where the Second Opinion service comes into the picture. The overall goal of the service is to help alleviate the physical, emotional, and monetary burden for rare disease patients. Treatment mistakes and misdiagnosis are more common in the rare disease patient population and can make these challenges all the more difficult.

Express Scripts has already been making headway in meeting these difficulties with its currently available programs, with 77 percent of cases seeing changes to treatment or diagnosis. These changes can make a huge difference in a rare disease patient’s quality of life, and in some cases can mean the difference between survival and death.

The program is meant to address rare diseases that have seen increases in treatment and diagnosis in recent years. These diseases include acromegaly, Gaucher disease, Huntington disease, hemophilia, idiopathic pulmonary fibrosis, alpha-1 deficiency, and hereditary angioedema. If the pace of research and drug development continues as projected, is it estimated that the number of drugs available for treating these diseases and their symptoms will increase from 46 in 2014 up to 76 by the year 2020.

The program also wants to help address the extreme cost of rare disease treatment. The cost of rare disease treatments has continued to rise by 54 percent in a period of four years. Second Opinion will ensure that patients have access to the treatment they need while doing whatever is possible to help minimize the costs for rare disease patients.


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