ST. LOUIS and BALTIMORE — Express Scripts announced a new Rare Conditions Care Value (RCCV) program with the introduction of a support service known as Second Opinion in partnership with PinnacleCare a private health advisory firm that offers personalized guidance and expert case review. Members whose plan enrolls in the RCCV program will have free access to Second Opinion, a potentially life-altering service that offers 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.

The Second Opinion support service addresses the challenges that patients with rare diseases face in securing a diagnosis and treatment. In doing so, Second Opinion helps reduce the emotional, physical and financial burden on patients and plan sponsors associated with misdiagnosis, waste and inappropriate treatments, which can cost millions of dollars and impact years of a patient’s life. Among patients who have used PinnacleCare services, nearly 77% of engagements have resulted in a change of diagnosis, treatment or care, when working in coordination with a patient’s pharmacy benefit manager and medical benefit plan.

“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,” said Glen Stettin, senior vice president of clinical, research and new solutions at Express Scripts.

“Getting to the right diagnosis and the right therapy is critically important for the more than 30 million Americans currently with a rare disease. 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 Rare Conditions Care Value (RCCV) program is addressing rare diseases that have recently seen significant increases in diagnosis and treatment utilization, such as hemophilia, Huntington’s disease, Gaucher’s disease, acromegaly, alpha-1 deficiency, hereditary angioedema and idiopathic pulmonary fibrosis. Among these disease states alone, the number of newly approved drugs that can treat the disease or the symptoms associated with the disease will rise from 46 in 2014, to 76 in 2020. These treatments can be very costly. For example, hereditary angioedema, a potentially life-threatening genetic condition occurring in as few as 1 in 50,000, can cost $2.2 million for one patient in a single year.

With more than 7,000 different rare diseases identified by the medical community so far, Americans living with a rare condition are as common as people living with diabetes. Among Express Scripts’ commercial book of business, the proportion of clients with at least one member who has one of the seven rare conditions addressed by the RCCV program has grown from 29%  in 2014, to 41% in 2017.  Just as the prevalence of rare disease has risen, so have the number of treatments available and the costs of treatment. Consider:

• One-third of new FDA-approved drugs have an orphan designation.
• The price of rare-condition medications has increased 54% in the last four years alone, with some drugs costing as much as one million dollars for a single year’s treatment.
• Patient out-of-pocket costs for these conditions have also risen more than 41%  since 2014 to an annual average of $1,790 in 2017, not accounting for manufacturer coupons or patient assistance programs, and may continue to grow as additional therapies in the pipeline come to market.

“Rare disease trends are growing on all fronts – more patients, new drugs and higher costs,” said Miles Varn, chief medical officer of PinnacleCare. “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.”

In addition to the Second Opinion service, the Rare Conditions Care Value program is enhanced by personalized patient support from clinical pharmacists and nurses specializing in the care of patients with rare disease through the services offered by our Accredo specialty pharmacy. This support includes one-to-one counseling and, when a drug regimen so requires, in-home nursing services to help patients better manage their disease and improve outcomes. The program also helps clients prepare for and manage the high costs of rare-condition treatments through a variety of cost-containment tools and strategies.

The Rare Conditions Care Value program is part of Express Scripts’ SafeGuardRx suite of solutions that offer affordable access to medication classes that pose the largest budgetary threat to payers, including inflammatory conditions, oncology, diabetes, high cholesterol, multiple sclerosis, pulmonary conditions and hepatitis C. Since 2015, Express Scripts has introduced 10 value-based programs that improve access to innovative drugs and provide a pathway to the best care offered to all patients of Accredo through specialist pharmacists at disease-specific Therapeutic Resource Centers.