Specialty Rx Pharmacists Play Critical Role Supporting Caregivers of Patients with Rare and Orphan Diseases

Updated on December 8, 2020

By Donovan Quill, President and CEO, Optime Care 

While the COVID-19 pandemic presents a number of challenges for all Americans, the nation’s millions of caregivers who care for patients with orphan and rare diseases have been grappling with unprecedented difficulties. Thirty million Americans live with a range of 7,000 rare or orphan diseases, and while many patients have struggled with reduced care, isolation and adherence challenges for most of their lives, the issue of self-isolation during the pandemic has impacted quality of life. 

These patients now face elevated stressors resulting from immunosuppression, concern about potential infection and hypersensitivity to viral threats. Caregivers for these individuals are more important than ever, especially with delays in routine and preventive care, which has left patients with rare and orphan disease more vulnerable than ever.

Specialty Rx pharmacists can serve as an essential lifeline for these patients and their caregivers by taking a personalized approach and offering counseling, guidance and education based on patient and caregiver needs. They also help caregivers manage the clinical and non-clinical issues associated with rare disease and provide expertise and support every step of the way. This approach helps to optimize the therapeutic value of a specialty drug by ensuring prescription accuracy, compliance and adherence to treatment.

A “patient-first” model of care offers targeted specialty Rx pharmacy support, including the ability to contact the pharmacist 24/7 and annual reassessments help to ensure that goals of therapy are on track and every challenge is addressed to improve quality of life for patient and caregiver alike.  

Value of Patient-First Care for Specialty Patients 

Despite restrictions, specialty patients continue to require a high level of therapy adherence support at a time when some pharmacies have reduced their hours. This can impede communication with physicians and other advocates, which has already been severely disrupted due to the need for social distancing.

Because rare and orphan disease patients require amplified support, they have much to gain from high touch service. A patient-first care team, including care coordinators, pharmacists, nurses and other specialists, is 100% dedicated to the disease state, patient community and therapy. This is a critical differentiator that improves upon the standard specialty pharmacies and hub service providers, which rely too heavily on technology solutions that fail to address human needs and variability.  

A patient-first approach to orphan diseases also enables pharmaceutical companies, pharmacists and other members of the care team to better address compliance and adherence to treatment in order to impact the patient experience, optimize caregiver support and improve outcomes. 

How Patient-First Care Works

The patient-first model focuses on small patient populations and adapts services to include targeted programs and services that deliver specialized expertise. The skill set and level of care required transcends the capabilities provided by traditional, legacy care organizations that are simply built for scale.

With a patient-first approach, specialty pharmacy, physicians, patients, caregivers and care coordinators connect effortlessly, instead of operating independently. The continuity across the entire patient journey strengthens communication, yields rich data for more informed decision making and improves the overall patient experience. This dedicated clinical team seamlessly ensures there are no treatment gaps for the patient.

A patient-first focus also addresses all variables around collecting data, while maintaining frequent communication with patients and their caregivers to ensure compliance and positive outcomes. 

Choosing the Right Patient-First Partner

To find a specialty pharmacy and patient management organization with a specialty focus, 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, caregivers and all those involved in the treatment journey is critical. This adds a much-needed layer of support that enables caregivers to becomemore engaged and take ownership in patient care, which leads to a stronger partnership and improved outcomes. 

During the pandemic, it’s also important to find a partner that offers a telehealth solution designed to streamline patient enrollment, maximize interaction with patients and caregivers for adherence and compliance, and provide continuity of care to avoid lapses in therapy—especially during the pandemic. It should rely upon dedicated team members who are experienced in every aspect of the patient’s drug and have the expertise to answer every question and concern from patients, caregivers, pharmacists, physicians, providers and payers. 

What’s more, the specialty partner should have the expertise to navigate 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 (URAC) for compliance with specialty pharmacy and the Accreditation Commission for Health Care (ACHC) for specialty pharmacy services. This demonstrates commitment to providing quality care and services to these patient populations and their caregivers during a precarious time in our nation’s history. 

The Editorial Team at Healthcare Business Today is made up of skilled healthcare writers and experts, led by our managing editor, Daniel Casciato, who has over 25 years of experience in healthcare writing. Since 1998, we have produced compelling and informative content for numerous publications, establishing ourselves as a trusted resource for health and wellness information. We offer readers access to fresh health, medicine, science, and technology developments and the latest in patient news, emphasizing how these developments affect our lives.