By Donovan Quill, President and CEO at Optime Care |
Patients with rare pulmonary diseases, including Alpha-1 Antitrypsin Deficiency (Alpha-1), a genetic condition that may result in serious lung disease in adults and/or liver disease at any age, have faced exceptional challenges during the Covid-19 pandemic. For many, it has been 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.[i]
During these challenging times, a patient-first approach and telehealth have been essential for addressing the unique healthcare coordination needs of these patients. This strategy offers a proactive, process-driven telehealth program that mitigates the transmission of infection, such as coronavirus, for these vulnerable individuals. This strategy also optimizes care continuity across the entire patient journey with robust communication that yields rich data, enabling clinicians to make more informed decisions and improve the overall patient experience.
A patient-first focus also addresses every variable around collecting data, while maintaining frequent communication with patients and their families to ensure compliance and positive outcomes.
Closer Look at Alpha-1
Alpha-1, a genetic condition known as “genetic COPD,” affects about 100,000 people in the United States. Often first diagnosed as asthma or smoking-related chronic obstructive pulmonary disease (COPD), undetected Alpha-1 affects about 3% of all people diagnosed with COPD.[ii]
Covid-19 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.[iii]
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 from 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.[iv]
A patient-first approach is highly recommended for overcoming the limitations of the standard specialty pharmacy, which often emphasizes technology solutions while failing to fully address human needs and variability.
Benefits of Patient-First Approach
A patient-first care team includes care coordinators, pharmacists, nurses and other specialists who focus on the disease, patient community and therapy. Specialty pharmacy and patient management organizations that emphasize a patient-first approach serve as partners for personalized care.
The most effective specialty and patient management partner offers a suite of comprehensive services tailored to optimize care for patients with Alpha-1 and other rare and orphan disorders. These professionals provide a trusted path for patients and stakeholder in the therapy journey. This adds much-needed support for the patient’s family and caregivers, enabling them to become more engaged in the care process, which leads to improved patient care and outcomes.
Telehealth
A patient-first 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. 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.
An 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.
Customized care coordination and telehealth solutions add a layer to a proactive, process-driven program, educating the patient on potential risks. This fosters 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 person’s well-being.
Meeting Stakeholder Needs
The best 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.
The right care management solution can meet the needs of everyone involved in the Alpha-1 patient’s journey, from specialty drug manufacturers to pharmacists, caregivers and physicians.
[i] Alpha-1 Foundation. Lung Disease. Lung Disease – Alpha-1 Foundation (alpha1.org). accessed June 1, 2021.
[ii] Alpha-1 Foundation.
[iii] Johns Hopkins. Pneumonia. Pneumonia | Johns Hopkins Medicine; accessed June 1, 2021.
[iv] Alpha-1 Foundation. Covid-19 Updates. COVID-19 Updates – Alpha-1 Foundation (alpha1.org); accessed June 1, 2021.
About the Author
Donovan entered the world of healthcare after a successful coaching career and teaching at the collegiate level. His personal mission was to help patients who suffer from an orphan disorder that has affected his entire family (Alpha-1 Antitrypsin Deficiency). Donovan became a Patient Advocate for Centric Health Resources and traveled the country raising awareness, improving detection, and providing education to patients and healthcare providers.
