Patient-first approach optimizes care for patients with rare lung disease amid Covid

During the Covid-19 pandemic, a patient-first approach that includes telehealth and virtual care options has been vital for addressing the unique healthcare coordination needs of patients with rare pulmonary disease, including Alpha-1 Antitrypsin Deficiency (Alpha-1). This genetic condition may result in serious lung disease in adults and/or liver disease at any age.

Many of these patients have been challenged to get much-needed therapy adherence support while also dealing with elevated stressors resulting from immunosuppression, raised consciousness of infection and hypersensitivity to viral threats. A patient-first approach offers a proactive, process-driven program that leverages telehealth consults which can effectively mitigate the transmission of infection, such as coronavirus, for these vulnerable individuals.

This strategy ensures care continuity across the entire patient journey with robust communication to yield rich data that clinicians can use to make more informed decisions and improve the overall patient experience. This focus also addresses variables surrounding data collection while maintaining frequent communication with patients and their families to ensure compliance and positive outcomes.

Understanding Alpha-1

Alpha-1 is a genetic condition that is commonly called “genetic COPD.” It affects about 100,000 people in the United States. This disease is often first diagnosed as asthma or smoking-related chronic obstructive pulmonary disease (COPD). COPD includes emphysema and chronic bronchitis. About 3% of all people diagnosed with COPD may have undetected Alpha-1.

The threat of Covid-19 is palpable for this community since it can cause lung complications such as pneumonia and, in the most severe cases, acute respiratory distress syndrome. Sepsis, another possible complication of Covid-19, can also cause lasting harm to the lungs and other organs.

People with Alpha-1 are likely to be particularly vulnerable to the effects of the Covid-19 infection and are considered among the most susceptible to serious complications if they become infected.

The symptoms that can distinguish between a typical exacerbation of lung disease versus Covid-19 include fever that lasts for several days or a high fever of any duration, loss of smell or taste, fatigue, muscle aches, diarrhea, abdominal pain and dropping oxygen levels.

While the technology solutions that typically accompany the standard approach of a specialty pharmacy (SP) are valuable, they often fail to address human needs and variability. This is precisely where a patient-first model and dedicated care team are highly recommended, presenting opportunities to transcend any limitations of the SP and providing a total patient experience.

High Level Support for Alpha-1 Patients

A patient-first care team includes care coordinators, pharmacists, nurses and other specialists who focus on the disease, patient community and therapy. SP and patient management organizations that emphasize a patient-first approach serve as partners for personalized care.

The most optimal specialty and patient management partner offers a suite of comprehensive services tailored to maximize the therapeutic opportunities for the treatment of Alpha-1 and other rare and orphan disorders. These professionals provide a trusted path for patients and all those involved in the treatment journey. 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.

Effective telehealth is particularly important for addressing the unique healthcare 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, and tied specifically to a particular specialty drug, telehealth enables pharmacists to empower their patients to thrive, even during times of disruption and uncertainty brought on by the Covid-19 pandemic and other unforeseen emergencies.

Customized care coordination and telehealth solutions add a layer to a proactive, process-driven program, educating the patient and their caregivers on potential risks. This fosters discussion between the patient and providers 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 side effects and capture real world evidence around the therapy, disorder and person’s well-being.

Meeting Stakeholder Needs

The most effective specialty partner delivers expertise in navigating the insurance landscape and prior authorization process, as needed, and knows 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.

Ultimately, the care management solution should meet the needs of everyone involved in the rare disease patient’s journey, from specialty drug manufacturers to pharmacists, caregivers and physicians.

Photo: Cycloneproject, Getty Images