Patients with Rare Pulmonary Disease Benefit from Patient-First Approach During COVID-19 Pandemic – and Beyond

By Donovan Quill, President and CEO, Optime Care 

Many patients with rare pulmonary diseases have found it difficult to get much-needed therapy adherence support while also dealing with elevated stressors due to being immunosuppressed, conscious of infection and hypersensitive to viral threats. COVID-19 can cause lung complications, such as pneumonia and, in the most severe cases, acute respiratory distress syndrome. As a complication of COVID-19, sepsis can also cause lasting harm to the lungs and other organs.

During these challenging times, a patient-first approach has been critical for addressing the unique healthcare coordination needs of these vulnerable patients, helping them to avoid transmission of infection with a proactive, process-driven telehealth program. 

A patient-first strategy also: optimizes care continuity across the entire patient journey with robust communication that yields rich data; enables clinicians to make more informed decisions, improves the overall patient experience; addresses every variable around collecting data; and helps maintain frequent connection between patients and their families to ensure compliance and positive outcomes. 

Focus on Alpha-1

Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic condition that may result in serious lung disease in adults and/or liver disease at any age. Often called “genetic COPD,” this disease affects about 100,000 people in the United States. Freqently misdiagnosed as asthma or smoking-related chronic obstructive pulmonary disease (COPD), undetected Alpha-1 affects about 3% of all people diagnosed with COPD.

Patients with Alpha-1 can be particularly vulnerable to the effects of the COVID-19 infection and are among the most prone to serious complications if they become infected. Symptoms that distinguish 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.

A patient-first approach is highly recommended for overcoming the limitations of the standard specialty pharmacy, which often emphasizes technology solutions rather than fully addressing human needs and variability.  

Key Benefits of Patient-First Approach + Telehealth 

A patient-first care team includes care coordinators, pharmacists, nurses and other specialists who focus on the disease, patient community and therapy. The most effective specialty and patient management partner provides personalized care through a suite of comprehensive services tailored to optimize care for patients with Alpha-1 and other rare and orphan disorders. 

These professionals offer a reliable path for patients and stakeholders, adding much-needed support for the patient’s family and caregivers, which enables them to becomemore engaged in the care process. All of this leads to improved patient care and outcomes.

When it comes to telethealth, a patient-first telehealth solution should be designed to:

• Streamline patient enrollment
• Maximize interaction with patients for adherence and compliance
• Provide continuity of care to avoid lapses in therapy

Dedicated team members with expertise in every aspect of the patient’s drug can address questions and concerns from patients, pharmacists, physicians, providers and payers. 

Effective telehealth is vital 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 help their patients thrive, even during times of disruption and uncertainty.  

This adds another important layer to a proactive, process-driven program, educating the patient on potential risks, fostering discussion between the patient and providers that is critical for understanding the patient’s needs, providing focus on the drug’s impact and monitoring overall health. By integrating 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 patient’s quality of life.