rare diseases

Strategy eases economic burden, improves outcomes, enhances quality of life

A Patient-First Approach to Specialty Pharmacy

Donovan Quill

President and CEO Optime Care

Americans living with a range of 7,000 rare or orphan diseases1 require support to fully comply with their prescribed medications and also have higher medical needs, often missing work, retiring early, and relying on caregiver assistance. These challenges pose a considerable financial burden for the patient, the unpaid family caregivers, and the health system. These expenses can be direct, such as the medical costs of managing the disease, and indirect, such as modifications to the home or vehicle.

What’s more, a new study estimated that 379 rare diseases cost nearly $1 trillion in the United States in 2019, driven in part by those indirect costs, including productivity losses of $437 billion.2 To help optimize care—and mitigate the economic burden of specialty drugs—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, improve outcomes, and enhance quality of life for patients.

A patient-first approach entails just what it says—putting patients first by providing comprehensive, best-inclass services tailored to help those with rare diseases maximize therapy.3 This means eliminating preconceived notions as well as being open, curious, and empathic. A patient-first approach entails counseling, guidance, and education based on the needs of the patients and their caregivers.

A patient-first strategy not only connects patients and care coordinators, but also strengthens communication, offers a higher level of care continuity, and yields rich data for more informed decision making. This enables clinical teams to eliminate treatment gaps, address all variables around collecting data, and maintain frequent communication with patients and their families. By putting patients at the center of the care process, care teams can focus on the disease state, patient community, and therapy, enabling them to transcend the limitations of the standard specialty pharmacy and hub service provider, which tend to focus on technology solutions rather than addressing human needs and variability.

Superior Patient Outreach

During the COVID-19 pandemic, telehealth has demonstrated how innovation can enable pharmacists to remain a constant part of the care team.4 Robust pharmacy telehealth is particularly important for addressing the unique health care coordination needs of specialty patients, especially those who are newly diagnosed.

When a patient-first strategy is part of a larger personalized care plan, and tied specifically to a particular specialty drug, pharmacists can be better positioned to provide the right plan to the right patient and include adherence tools specific to the individual patient’s needs. This empowers patients to thrive, even during times of disruption and uncertainty.

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 add another key layer, educating patients about potential risks. A patientfirst care model also fosters discussion between the patient and pharmacist that is essential to understanding the patient’s needs. By incorporating assessments and predetermined touch points each month, the care team is able to stay on top of side effects and capture real-world evidence around the therapy, disorder and person’s well-being.

The Right Partner

When finding the right specialty pharmacy and patient management organization, look for a partner who offers a suite of comprehensive services for the treatment of rare and orphan disorders. A specific patient-first philosophy and approach adds much-needed support for the patient’s family and caregivers, enabling them to become more engaged in the care process.

Also, make sure the chosen partner’s telehealth solution is designed to streamline patient enrollment, maximize drug adherence and compliance, and avoid lapses in therapy. The specialty partner should rely on dedicated team members who have expertise in every aspect of the patient’s drug and can address every question and concern from all stakeholders.

An effective specialty partner also demonstrates expertise in navigating the insurance landscape and prior authorization process. It’s also important to find a partner with dual accreditation from URAC (Utilization Review Accreditation Commission) and the Accreditation Commission for Health Care. This demonstrates a commitment to providing quality care and services.

In today’s complex health care environment, the care management solution for patients with rare and orphan diseases should meet the needs of everyone involved in the patient’s journey, from specialty drug manufacturers to pharmacists, caregivers and physicians— conveniently delivered from one central point of contact.

During the height of the COVID-19 pandemic, pharmacists used telehealth to keep in contact with patients and lessen disruptions in the continuity of care.

References

OPINION

1. National Center for Advancing Translational

Sciences. FAQs about rare diseases. Updated

January 26, 2021. Accessed November 16, 2021. bit.ly/324gTmN 2. Every Life Foundation. The National

Economic Burden of Rare Disease Study.

Accessed November 16, 2021. bit.y/3ckXSOT 3. Quill D. Patient-first strategy vs.”Pharma

Strategy Expertise” for building clinical research success in rare and orphan disease treatment. Clinical Researcher. 2021;35(5). bit.ly/3wT4mhD 4. Segal EM, Alwan L, Pitney C, et al. Establishing clinical pharmacist telehealth services during the COVID-19 pandemic. Am J

Health Syst Pharm. 2020;77(17):1403-1408.