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New Rare Disease Program Addresses Patients' Challenges and Burdens

Alison Rodriguez
Patients with rare diseases often face a difficult and long diagnosis and treatment process. Express Scripts recently announced a new Rare Conditions Care Value program that includes the introduction of a support service known as Second Opinion, which offers guidance and expert case review for patients on an individual basis, with PinnacleCare.
Patients with rare diseases often face a difficult and long diagnosis and treatment process. Express Scripts recently announced a new Rare Conditions Care Value (RCCV) program that includes the introduction of a support service known as Second Opinion, which offers guidance and expert case review for patients on an individual basis, with PinnacleCare.

Specifically, the Second Opinion service would address the challenges patients with rare diseases face through reducing the emotional, physical, and financial burden on patients. These burdens are often associated with misdiagnosis and inappropriate treatments, which can create not only a large financial burden but heavily influence a patient’s quality of life. 

"The years spent going to different doctors, getting myriad medical tests, managing paperwork and experimenting with numerous treatments is an ordeal for patients and their health, as well as for those who love and care for them," Glen Stettin, MD, senior vice president of clinical, research, and new solutions at Express Scripts, said in a statement.

According to Express Scripts, among those who have used PinnacleCare’s current services, approximately 77% of engagements have resulted in a change of diagnosis, treatment, or care, when working with a patient’s pharmacy benefit manager and medical benefit plan.

"Getting to the right diagnosis and the right therapy is critically important for the more than 30 million Americans currently with a rare disease,” said Stettin. “Combining the benefits of PinnacleCare's Second Opinion program with the expertise and care delivered by the specialist pharmacists in our Accredo Specialty Pharmacy can make a tremendous difference in the patient's quality of life and substantially reduce wasteful spending."

The RCCV program is intended to address rare diseases that have seen significant increases in diagnosis and treatment utilization, such as hemophilia, Huntington disease, Gaucher disease, acromegaly, alpha-1 deficiency, hereditary angioedema, and idiopathic pulmonary fibrosis. It is expected that, among these diseases, the number of newly approved drugs that will treat the disease or associated symptoms will rise from 46 in 2014 to 76 in 2020.

Although the prevalence of rare disease has risen, the number of treatments available and the costs have increased as well. Express Scripts noted that one-third of new FDA-approved drugs have an orphan designation, while the price of rare-condition medications have increased by 54% in the last 4 years.

"In order to provide affordable access to these newer therapies, we need to make sure that the diagnosis is correct, and that the pharmaceutical treatment plan is based upon expert best practices. Working with Express Scripts, we'll help patients achieve better health outcomes and ensure the care they receive is thoughtful and cost effective."

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