INFOGRAPHIC: Are Rare Diseases Really That Rare?

Jul 3, 2018
Patients and payers face cost and care challenges, even as more treatments for rare diseases become available.

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Americans living with a rare condition are as common as people living with diabetes. Yet, for the 30 million patients across the country who have a rare disease, the path to diagnosis and treatment can be lonely – and costly. For many patients, the journey to diagnosis takes, on average, 7.6 years and consultations with seven different doctors.

While FDA approvals for orphan drugs have increased in recent years, so have patient out-of-pocket costs for rare condition medicines, which are up more than 41 percent since 2014.

Among the most alarming facts about rare conditions is the toll they take on pediatric patients. Fifty percent of rare diseases affect children, while 30 percent of children with rare diseases won’t live to see their fifth birthday.

For physicians, knowledge and experience in certain rare conditions may be limited to one or two cases over the course of a career. Payers can be overwhelmed by the challenge of ensuring best-in-class clinical care for their members (or patients), while also managing the high cost of treating rare conditions.

Express Scripts’ new Rare Conditions Care ValueSM (RCCV) program aims to reduce the burden of getting to the right diagnosis and treatment, and ensure success with that treatment once identified.

The program, which will begin January 1, 2019, will provide members whose plan is enrolled in RCCV with free access to the Second Opinion support service through a partnership with PinnacleCare®, a private health advisory firm that offers personalized guidance to expert medical opinions and research. Second Opinion offers members diagnosed with a rare disease with a second opinion from a top specialist in the field who will provide an expert assessment of the diagnosis and recommendations on the most effective treatment protocol.

In addition to Second Opinion, the Rare Conditions Care Value program is enhanced by the personalized patient support offered by our clinical pharmacists and nurses who specialize in the care of patients with rare disease at our Accredo specialty pharmacy. This support includes one-to-one counseling and, when the drug regimen requires, in-home nursing services to help patients better manage their disease and improve outcomes.

This program is part of Express Scripts SafeGuardRxSM suite of solutions that commit to ensuring patient access and care while protecting plan interests.

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Lab Staff
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