Patient-First Approach Addresses Unique Needs of Patients With Rare Disorders


Now more than ever, 30 million Americans living with a range of 7000 rare or orphan diseases require a high level of therapy adherence support.

Tablet Technology

Now more than ever, 30 million Americans living with a range of 7000 rare or orphan diseases require a high level of therapy adherence support. To optimize care during uncertain times, such as amid the current pandemic, a patient-first approach can enable pharmaceutical companies, pharmacists, physicians, and other members of the care team to better address compliance and adherence to treatment to impact the patient experience and improve outcomes.

The focus on small patient populations includes targeted programs and services that deliver specialized expertise that goes well beyond the scope of capabilities provided by traditional, legacy care organizations that are simply built for scale.

Benefits of Patient-First Strategy

With a patient-first approach, physicians, specialty pharmacists, patients, and care coordinators connect effortlessly, rather than operating independently. This higher level of care continuity strengthens communication, yields rich data for more informed decision making and improves the overall patient experience. Dedicated clinical teams are better able to seamlessly eliminate treatment gaps for the patient. 

What’s more, a patient-first strategy addresses all variables around collecting data while maintaining frequent communication with patients and their families to ensure compliance and positive outcomes.

Patients with orphan and rare diseases require a high level of support and have much to gain from high-touch service. A care team, including care coordinators, pharmacists, nurses, and other specialists, should be 100% dedicated to the disease state, patient community, and therapy. This is critical for transcending the limitations of the standard specialty pharmacy and hub service provider, which too often rely on technology solutions that fail to address human needs and variability. 

When the focus is on the product instead of the patient, the pharmacy’s incentives lean toward monthly profits and prevent pharmacies from being truly patient-focused and able to deliver the best possible care.

Innovation Enhances Patient Outreach

Telehealth has taken center stage during the COVID-19 pandemic, demonstrating how innovation can enable pharmacists to remain a constant part of the care team during disruptions in the continuity of care.

Effective pharmacy telehealth is particularly important for addressing the unique healthc are coordination needs of patients with a rare or orphan disease and, more importantly, the newly diagnosed patient.

As part of a larger personalized care plan, pharmacists can be better positioned to empower their patients. They do this by providing the right plan to the right patient and include adherence tools specific to the individual patient’s needs. This gives the patient a better chance at thriving, despite disruption and uncertainty brought on by the pandemic and other unforeseen emergencies. 

By partnering with a patient-first organization that integrates specialty pharmacy services, product distribution, and patient management into a dedicated program, pharmacists enable patients to receive the intense care, outreach and consistent support they require to ensure positive outcomes. 

Customized care coordination and telehealth solutions add another layer to a proactive, process-driven program, educating the patient on potential risks. A patient-first care model also fosters discussion between the patient and pharmacist that is essential to understanding the patient’s needs, providing focus on the drug’s impact and monitoring overall health. By incorporating assessments and predetermined touch points each month, the care team is able to stay on top of adverse effects and capture real-world evidence around the therapy, disorder and patient’s well-being.

Finding the Right Patient Management Partner

When identifying a patient management organization that creates a partnership for personalized care, look for a partner that offers a suite of comprehensive services tailored to maximize the therapeutic opportunities for the treatment of rare and orphan disorders. A patient-first approach that provides the trusted path for patients and all those involved in the treatment journey is essential. This adds much-needed support for the patient’s family and caregivers, enabling them to become more engaged and take ownership, which leads to a stronger partnership and better patient care.

The partner’s telehealth solution should be designed to streamline patient enrollment, maximize interaction with patients for adherence and compliance, and provide continuity of care to avoid lapses in therapy. It should rely upon dedicated team members who have expertise in every aspect of the patient’s drug and can address every question and concern from patients, pharmacists, physicians, providers, and payers.

The most effective specialty pharmacy should demonstrate expertise in navigating the insurance landscape and prior authorization process, as needed, and know how to monitor and encourage compliance. It’s also important to find a partner with dual accreditation from the Utilization Review Accreditation Commission for compliance with specialty pharmacy and the Accreditation Commission for Health Care for specialty pharmacy services. This demonstrates commitment to providing quality care and services to these patient populations.

Ideally, the care management solution should meet the needs of everyone involved in the patient’s journey, from specialty drug manufacturers to pharmacists, caregivers, and physicians—all delivered from one central point of contact.

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