Patient-First Approach Optimizes Care for Patients with Rare Lung Disease Amid COVID

By Donovan Quill

For patients with Alpha-1 Antitrypsin Deficiency (Alpha-1), a rare lung disease, a patient-first approach that leverages telehealth and other virtual care options has been critical during the COVID-19 pandemic. The genetic condition, which can lead to serious lung disease in adults and/or liver disease in patients of any age, affects about 100,000 people in the United States. The disease may first be diagnosed as asthma or smoking-related chronic obstructive pulmonary disease (COPD) — about 3% of all COPD patients may have undiagnosed Alpha-1. During the pandemic, it has been difficult for Alpha-1 patients to obtain therapy adherence support while also facing increased stressors from immunosuppression, greater awareness of infection, and hypersensitivity to viral threats. However, a patient-first approach that involves telehealth consultations can help to reduce the threat of infection for these patients. A patient-first care team for Alpha-1 patients features care coordinators, nurses, pharmacists, and other specialists, with specialty and patient management organizations that take a patient-first approach serving as partners for personalized care. Ideally, a specialty and patient management partners provides a suite of comprehensive services designed to maximize the therapeutic options for the treatment of Alpha-1 and other rare conditions. With that comes critical support for the patient's family and caregivers, which helps them to increase their engagement and take ownership. The telehealth component should work to streamline patient enrollment, maximize patient interaction for adherence and compliance, and offer continuity of care to avoid gaps in treatment. Additionally, the specialty partner should help to navigate the insurance and prior authorization processes, and it should know how to monitor and encourage compliance.

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