Pharmacy-Integrated Telehealth Solutions Support Patients with Orphan and Ultraorphan Disorders During and After COVID-19 Pandemic

Pharmacy Practice in Focus: OncologyNovember 2020
Volume 2
Issue 5

A recent poll showed that more than 1 in 8 Americans engaged in a video consult with a health care professional in recent months.

During the coronavirus disease 2019 (COVID-19) pandemic, patients with orphan and ultraorphan diseases have been challenged to get much-needed therapy adherence support. This means that 30 million Americans with a range of 7000 rare or orphan diseases—including Huntington disease, amyotrophic lateral sclerosis, Cushing syndrome, α1-antitrypsin, chronic immune thrombocytopenic purpura, and muscular dystrophy—have been at greater risk while self-protecting.1

Many of these patients have struggled with reduced care, isolation, and adherence issues for most of their lives, but they now face elevated stressors because they are immunosuppressed, conscious of infection, and hypersensitive to viral threats. Adding to the challenge is that some pharmacies have reduced their hours. This impacts communication with physicians, which has already been severely disrupted due to the need for social distancing.

As an integral part of the care team, pharmacies serve as lifelines for these patients by helping to prevent lapses in continuity of care. For this reason, pharmacists who integrate with a telehealth solution can ensure that patients in rural locations—and those now living in self-imposed isolation—have consistent and reliable contact with pharmacy services during these unprecedented times.

A recent analysis found that telehealth visits increased 50% in March 2020, and a recent poll showed that more than 1 in 8 Americans engaged in a video consult with a health care professional in recent months.2

Telepharmacy: Key Factor in Evolving Health Care Landscape

Accessing pharmacy services via telehealth is particularly important for addressing the unique health care coordination needs of patients diagnosed with a rare or ultrarare condition and, more importantly, the newly diagnosed patient.

When telehealth is part of a larger personalized care plan tied specifically to a particular specialty drug, pharmacists can be better positioned to help their patients by providing the right plan to the right patient, including adherence tools specific to the patient’s needs. This gives the patient a better chance of avoiding adverse events, visits to the emergency department, or hospitalization.

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 dependable support they require to ensure positive outcomes.

Benefits of Patient-First Model

A patient-first care model provides a proactive, process-driven program that can educate the patient on potential risks to mitigate the transmission of possible infections such as COVID-19. The model should be grounded in customized care coordination and telehealth solutions as a strategy for fostering discussion between the patient and pharmacist. This is critical for understanding the patient’s needs, providing focus on the drug’s impact, and monitoring their overall health.

By incorporating assessments and predetermined touch points each month, the care team is able to rapidly address adverse effects (AEs) and capture real-world evidence around the therapy, disorder, and patient’s well-being.

A single-source partner offers additional support in ensuring continuity of care that is absent in legacy care models. As a result, patients benefit from better care and more consistent experience. The patient-first model has been shown to lead to improved compliance and overall outcomes.

Clinical care teams reach out to patients via videoconference or phone call to determine their level of understanding, health literacy, and status around a particular disorder. This way, they are able to help mitigate potential AEs, offer encouragement, and provide a level of emotional support to patients and their caregivers.

A telehealth option can be fully integrated for pharmacies to provide care coordination based on each patient’s specific needs, including, but not limited to, medication counseling, education on disease states, and expectations for each drug. These customized care plans are designed to better serve patients, caregivers, providers, and payers, to help overcome hurdles around the complexity of rare, orphan, and ultraorphan disorders.

Finding the Right Patient Management Partner

Ideally, the right specialty patient management partner should be focused on personalized care with a focus on disorders affecting smaller patient communities. The key is to look for a suite of comprehensive services tailored to maximize the therapeutic opportunities for the treatment of these disorders and a patient-first approach that provides a trusted path for patients and all those involved in the treatment journey.

A patient-first model adds a much-needed layer of support for the patient’s family and caregivers, allowing them to become more engaged and take ownership in the care process, which leads to a stronger partnership and better patient care.

The telehealth solution should be designed to streamline patient enrollment, maximize interaction with patients for adherence, and provide continuity of care to avoid lapses in adherence. It should also offer dedicated team members who are up-to-date on every aspect of the patient’s drug and have the expertise to answer every question and concern from patients, pharmacists, physicians, providers, and payers. It is also important for them to have experience in navigating the insurance landscape and prior authorization process, as needed, and to know how to monitor and encourage compliance.

Look for management solutions with dual accreditation from URAC for compliance with specialty pharmacy and the Accreditation Commission for Health Care for specialty pharmacy services. These designations demonstrate a commitment to providing quality care and services to specialty patient populations.

Overall, the most effective patient-first care management solutions are designed to meet the needs of e

veryone involved in the patie

nt’s journey—from specialty drug manufacturers to pharmacists, caregivers, and physicians—in a way that is delivered from a single, central point of contact.

Donovan Quill is president and CEO of Optime Care, a pharmacy, distribution, and patient management organization.


  • Breining G. Rare diseases difficult to diagnose, cures hard to come by. Association of American Medical Colleges. Published April 11, 2017. Accessed September 3, 2020.
  • Telehealth basics for pharmacists during COVID-19 and beyond. American Pharmacists Association. Published May 20, 2020. Accessed September 3, 2020.

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