Raising Awareness on Rare Disease Day

Feb 28, 2019

At Express Scripts, teams of experts are focused every day on rare diseases and the treatments that change and save patients’ lives.

  • Cystic Fibrosis
  • Hemophilia
  • Immune Deficiency
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 Today, as the healthcare industry recognizes Rare Disease Day, we recognize the one in 10 Americans who are living with a rare disease. We recognize their caregivers and loved ones as well, because a rare disease diagnosis can impact not only a patient but a family, a school, a community.

As a leading care provider to patients with rare diseases, Express Scripts dispenses and distributes many rare disease therapies through Accredo specialty pharmacy and CuraScript SD.

Rare Disease Facts

Let’s take a look at the impact:

  • Approximately 30 million Americans are living with a rare disease. There are an estimated 7,000 known rare diseases; many others have yet to be discovered.
  • Patients see an average of seven doctors over a period of 7.6 years before being diagnosed with a rare disease.
  • In 2017, insurance providers paid an average of $147,308 per patient on orphan drugs (those that treat rare conditions) as opposed to $30,708 per patient on non-orphan, specialty drugs.

At a Glance – Three Conditions

Just as each patient is unique, so is each rare condition. In general, however, living with a rare disease can be physically, emotionally and financially devastating. Below is a look at three rare diseases.

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Specialized Care Across Express Scripts

One of the greatest challenges patients with rare diseases face is the lack of information related to their condition and treatment. Many healthcare providers have little to no knowledge of specific rare diseases. That’s why teams at Express Scripts have solutions to support patients and prescribers as they manage these therapies.


Clinicians and patient care advocates at Accredo's 15 Therapeutic Resource Centers understand the complex needs of orphan conditions, delivering medications quickly, preventing lapses in therapy, and providing disease-tailored follow-up clinical care and education. Teams from nearly all our TRCs support patients with orphan conditions. However, our Pulmonary Arterial Hypertension, Immune Deficiencies and Enzyme Disorders, Bleeding Disorders, Cystic Fibrosis, and Rare Disease and Gene Therapy TRCs are dedicated to specific orphan conditions, with customized care solutions for families and prescribers affected by these rare disease.

CuraScript SD

To meet the unique needs of medications with small patient populations and critical special handling requirements, CuraScript SD specialty distribution has a unique service model that specializes in providing customized end-to-end distribution services to hospitals, healthcare providers and authorized specialty pharmacies. For example, some medications must be packaged following hazardous shipping requirements, frozen shipping and/or custom delivery protocoals, with the ability to get medications to healthcare providers within hours.

Rare Conditions Care Value Program

As part of Express Scripts SafeGuardRx® suite of solutions, the Rare Conditions Care ValueSM program helps to reduce the burden of getting to the right diagnosis and treatment, and helps ensure success with that treatment once it is identified.

The Promise of Gene Therapies

We know that 80% of rare conditions have a genetic component, and Express Scripts is focused on providing appropriate clinical and financial management for gene therapies and other curative and transformative therapies coming to market.

On Rare Disease Day and every day, Express Scripts is committed to using our experience to provide the most up-to-date treatment and personalized care for our patients, as well as support to their caregivers.

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