Stay-at-home orders and even required closures have become the new normal for many workforces and companies around the world in response to the COVID-19 pandemic. But patient advocates in the rare disease community, including Lisa Butler, are grateful these directives don’t apply to every business.
“Plasma donor centers and the employees who work there are critical to ensuring patients have access to life-saving therapies,” says Butler, head of the American Plasma Users Coalition (A-PLUS). “Plasma-derived medicines are non-interchangeable and unique, and they rely on the donations of plasma from healthy volunteers.”
Last month, A-PLUS and several other patient advocacy groups were relieved when the U.S. Department of Homeland Security released its initial list of “essential critical infrastructure workers” to help provide guidance to state and local officials working to protect their communities from the spread of COVID-19.
The U.S. guidelines, which were created to help ensure continuity of functions critical to public health and safety, include plasma centers, R&D facilities, pharmaceutical manufacturing sites and other health care companies.
Working for patients both from home and on-site
While CSL Behring has strongly encouraged many of its employees to work remotely if their roles allow it to prevent the spread of coronavirus, thousands of employees who work at the company’s CSL Plasma centers in the U.S. and Europe and in critical manufacturing roles continue to report to work on-site.
Their efforts, which ensure the undisrupted development and delivery of the company’s innovative medicines, have not gone unnoticed both inside and outside the company.
“During these trying times, the needs of our patients don’t change and neither does our commitment to them,” says Chief Operating Officer Paul McKenzie, who oversees the company’s end-to-end operations. “We are extremely grateful to our colleagues at our plasma collection centers and manufacturing sites who are on the front lines of our efforts to ensure we can keep making and delivering our life-saving medicines for the people who depend on them.”
As COVID-19 began spreading across the globe earlier this year, patient advocacy groups started monitoring closely whether the pandemic would negatively impact the daily operations of plasma donor centers, the majority of which are located in the U.S.
CSL Behring’s plasma centers are the first step in the supply chain for the development of plasma-derived therapies, which are used to treat rare and serious diseases, including immunodeficiency and autoimmune diseases, and hereditary and acquired bleeding disorders.
The Immune Deficiency Foundation (IDF) was among several patient groups that joined A-PLUS in signing a letter last month to lawmakers, advocating for the essential business designation for plasma centers and companies that manufacture plasma-derived therapies.
“We were relieved that the Department of Homeland Security declared [plasma centers] as essential businesses,” says John Boyle, President and CEO of IDF.
The International Patient Organisation for Primary Immunodeficiencies wrote an open letter urging health agencies and policy makers to take additional steps that would address concerns over a decrease in blood and plasma donations during the pandemic.
“In times of the pandemic, as recognized by the World Health Organization, there is an absolute need to maintain a safe, sufficient and accessible blood and plasma supply in the face of widespread disease,” the letter states.
Other patient groups have been using social media to highlight the importance of the plasma therapeutics industry and its workforce and to promote the importance of becoming a plasma donor.
“If you can, please donate plasma,” the Jeffrey Modell Foundation recently shared on Facebook. “So many depend on this vital gift that you can give.”
“Plasma donors are everyday heroes” is one of the messages that Butler, in her dual role as executive director of the GBS-CIDP Foundation, is hoping to spread across social media in support of the patients her organization represents, including those with Guillain-Barre syndrome, CIDP and other related syndromes.
That sentiment was also felt for the teams collecting plasma.
“We are grateful for the commitment of donation center staff in the U.S. and in Europe who continue to keep their doors open and welcome donors every day,” says Amy Efantis, president and CEO of the Plasma Protein Therapeutics Association. “Each of them should know they play a crucial role in helping countless people live normal, healthy lives.”