CHELSEY, LIVING WITH NMOSD
People living with rare diseases participated in Genetic Alliance U.K. patient experience survey
Countries served through our Partnerships for Growth Model
Homecare capabilities across Australia, Brazil, Colombia, Italy and Spain
Solutions To Accelerate Results for Patients (STAR)
People living with rare diseases and devastating conditions are our inspiration and our Guiding Star. We launched STAR to ensure we develop deep expertise in understanding patient insights and accelerate patient-centered innovation.
In 2020, we conducted two, virtual STAR Patient and Stakeholder Value (PSv) workshops (Amyotrophic lateral sclerosis (ALS) and Dermatomyositis) with participation from patients, caregivers and physicians. One of the workshops uncovered a need for mental health resources across our portfolio, which inspired Alexion to co-create solutions to provide mental health support to patients and caregivers living with rare diseases.
Alexion also established a definition for patient centricity and committed to applying patient-centered insights and patient input into three areas of our clinical trials – protocol design, trial excellence, and value- and access-evidence creation.
In Trying Times
Alexion offers programs for patients to help with health insurance navigation, disease information, ongoing support and community connections. Our vision is to help and empower patients to understand their disease, communicate with their healthcare providers and improve health outcomes.
In response to COVID-19, we partnered with medical professionals in the U.S. on our OneSource® program to support patients living with aHUS, gMG, HPP, LAL-D, NMOSD and PNH on their evolving needs through the pandemic, such as answering the many questions patients and their families had about their condition and COVID-19, assisting with changes in healthcare insurance coverage or different treatment delivery options, including home infusion, and conducting patient educational webinars.
Globally, we worked with Alexion affiliates to ensure continuity and adaptation or implementation of homecare services during this critical time. In regions like the United Kingdom, our Alexion team was able to guarantee that patients on Alexion medicines were prioritized to receive homecare in case of a shortage of nurses while also expanding access to infusions in hospitals if hospitalized with COVID-19.
At Alexion, we recognize that access to medicine can be challenging, and we are committed to providing patients with rare diseases and devastating conditions access to our therapies. In 2020, we introduced Expanded Access Programs (EAP) at Alexion to provide pathways for patients suffering from a serious condition to gain access to investigational medicines outside of clinical trials.
Our Global Access to Medicines (GATM) program provides eligible patients outside of the U.S. with an option to apply for access to our medicines at no cost under certain circumstances. Among the most important advancements to GATM in 2020 was the ability to allow this option for patients who are benefiting from clinical trials for a medicine that will not be produced commercially to continue the therapy.
In the U.S., the Alexion Access Foundation (AAF) enables certain patients who have been diagnosed with a disease for which Alexion has an FDA-approved medicine to gain access without insurance, access to insurance, or any other means of obtaining Alexion medication.
At Alexion, quality underpins everything we do. In 2020, we built upon the solid foundations already established in our Quality Policy:
Our new Data Integrity Policy takes a holistic approach, embedding data integrity principles into our day-to-day work. The launch of the policy was coupled with a new comprehensive eLearning program designed to educate employees on how to detect, prevent and predict gaps within data governance.
Our revised Notification to Management Process reinforces our commitment to open communication and aids Alexion employees in escalating quality issues in a timely and transparent manner.
Our new document management system, Vault Quality, launched in 2020, improves our ability to work with controlled documents and provides robust content organization, detailed audit trails and powerful search capabilities.
In the pharmaceutical industry, product counterfeiting and diversion is an unfortunate reality. There is a black market for nearly every medicine, and ours are no exception. In 2020, we continued to add serialization technology to all of our products, allowing hospitals to see and evaluate the legitimacy of the supply chain process of every medicine pack they receive with a simple scan. We also completed a multiyear effort to upgrade our product features and packaging to enhance traceability with overt and covert methods.