Patients With Rare Disease Benefit from Patient-First Approach

In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people, with the total number of rare disease patients estimated to be 25-30 million. While these diseases may be rare, the total number of people affected is significant. Rare Disease Day, Feb. 28, 2022, provides an opportunity for everyone to learn more about rare diseases and help raise awareness about the 7,000+ rare diseases that impact over 300 million people globally. 

Experts predict that Specialty drug costs will increase annually by 21-24% over the next few years. In fact, Specialty rare diseases have led to substantial direct and indirect economic burdens for the patient, unpaid family caregivers and the U.S. health system.  

Rare disease patients and their families face significant challenges: lack of medical expertise on their disease, difficulty getting a diagnosis, few opportunities for optimal care, and the high costs of disease-specific medications, including gene/cell therapies. The cost for one Specialty medication used on a chronic basis is three times the average annual income for Medicare patients, placing prescription medications out of reach for many older adults or forcing them to choose between the medicines they need or buying groceries or paying rent. 

Fortunately, an innovative patient-first strategy to Specialty drug management provides a more compassionate—and effective—way to provide better services and support for people who have been marginalized by the system or isolated by their disease state. In fact, patient-first Specialty pharmacies represent the latest industry game-changer—and an effective way to cut costs without compromising quality for Specialty patients. 

Value of Patient-First

A patient-first approach is particularly effective because every decision made across the care team is about what is best for the patient. This helps to support family caregivers and patients with counseling, guidance, and education that is based upon their particular needs. This also helps to optimize the therapeutic value of a Specialty drug by ensuring prescription accuracy, compliance, adherence to treatment, and side effects management.  

A patient-first strategy provides continuity of care through interventions delivered at key points in the patient journey to avoid lapses in therapy and improve the quality of life for these patients. The best patient-first approach provides exceptional support to caregivers, healthcare providers, and biopharma partners, with an experienced team of Specialty Rx pharmacists available 24/7 to play a critical role in helping to manage the clinical and non-clinical issues associated with rare diseases. Patient-first programs can also help mitigate the high costs of Specialty drugs, such as gene/cell therapies, especially with the support of financial solutions offered by payers, including pay-over-time, loan-based programs, and custom copay assistance programs.

Specialty pharmacies represent a reliable distribution channel for high-cost medications, offering convenience to the patient and lower costs while maximizing insurance reimbursements from companies that cover the drug. They focus on high-cost, high-touch therapies with chronic, complex diseases. The patient-first approach enables stakeholders to cultivate a deeper relationship with patients, offering personalized information, care insights, and a higher level of support. 

In many cases, Specialty-focused pharmacists become almost a part of the patient’s family, listening to and sharing personal stories and developing the kind of relationships that uplift the pharmacist and the patient. This family environment can have a very positive impact on patient outcomes. 

Patient-First Solution Checklist

When looking for a patient-first Specialty drug management solution, stakeholders should find one that offers a site of care optimization (SOC), integration of both medical and pharmacy benefits, and proprietary technology platform for real-time Rx data and analytics—with all services available as a whole or chosen a la carte to meet particular needs.

The solution should also offer a national network of high-touch Specialty pharmacy and infusion centers/home health, medication home or office delivery, clinical support, patient education, integrated real-time Rx fulfillment data for monitoring and transparency, pharmacy accuracy and time-to-fill metrics, and compliance and persistency reporting, as well as streamlined prior authorizations and appeals, data and analytics, enhanced patient care coordination and patient journey mapping.               

It’s also important to identify solution partners that offer unique financial services to offset the high costs of specialty medications, especially gene/cell therapies. Loan-based programs and financial assistance eliminate barriers to accessing high-cost therapies and ensure that members receive the Specialty medications they need, when they need them most, regardless of financial status. Because Specialty medications and therapies are such a critical component of healthcare, innovative financial programs help to expand health equity and ensure that therapies are more attainable for those in need.

Author: Brandon Salke, Pharm.D., Pharmacist-in-Charge, Optime Care

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