Misunderstanding Plasma Donation Has Real Consequences for Patients
by Jacob Fuller
When Richard Sperry received a devastating diagnosis in late 2019, he began planning out the last days of his life. He, his wife, and his three daughters were grappling with the grief and uncertainty of his condition.
All of that changed after an appointment at the Mayo Clinic, where Richard learned he did not in fact have Amyotrophic Lateral Sclerosis (ALS), but instead faced a rare, treatable condition called Multifocal Motor Neuropathy (MMN). For over three months, Richard had been incorrectly diagnosed with a progressive and fatal neurodegenerative disease. The accurate diagnosis was a miracle. MMN patients who received treatment derived from human plasma could regain much of their lost strength. His life could return to a new normal with a steady regiment of infusions of Intravenous Immunoglobulin (IVIG), a plasma-derived therapy, once every three weeks for the remainder of his life.
Almost immediately after beginning treatment, he began to see results. “I remember waking up one morning, and I could open and close my hand, something I hadn’t been able to do in months, and I elbowed my wife, who was sleeping next to me,” he told me. “It was the most incredible thing I’ve ever experienced.” For Richard, IVIG had given him a regained sense of control that had been absent from his life. His medication, made possible by the generosity of voluntary human donors, allowed him to return to his role as a loving husband, father, and productive businessman.
MMN, and a related condition Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), are chronic conditions in which the immune system mistakenly attacks the myelin sheath surrounding nerves. For patients with CIDP and MMN, IVIG is considered the gold standard of treatment, often stopping disease progression and leading to a significant reversal of symptoms. For those like Richard, plasma wasn’t just a treatment, it was a miracle.
Yet, if Richard had been diagnosed a few decades prior, or in another part of the world, he likely would not have had access to this unique treatment. This is due to the wide availability of source plasma — plasma derived from healthy, voluntary donors — which is largely supplied by the United States. The U.S. is one of the few nations worldwide that allows for donors to be compensated for their time while donating their plasma.
The U.S. practice of compensating plasma donors is often scrutinized by news media, particularly in times of economic duress. News stories focusing on plasma collection often highlight their locations in lower-income neighborhoods and frame the practice as exploitative, with sensationalized headlines such as a recent Bloomberg article This framing excludes the real, lifechanging impact these biologic medicines have on patients, and instead paints a dark vision that misses the full impact of the vein-to-vein connection between patient and donor.
This kind of overt symbolism may serve the purpose of providing a compelling lead for journalists, but is a poor, and frankly inaccurate way of understanding the benefit that plasma donation gives to those who choose to donate. It also unfairly frames patients whose medicine is derived from these donations as beneficiaries of ill-gotten gains, instead of a lifesaving gift.
The reality is that plasma donation is widely regarded as safe, having similar, minor risks akin to blood donation. Collection centers employ strict standards to ensure a donor’s health, safety, and wellbeing. Furthermore, media criticism also often argues that paying donors undermines a normally altruistic process by introducing a financial incentive.
But, according to Peter Jaworski, Professor of Strategy, Ethics, Economics, and Public Policy at Georgetown University, this perspective misses the point. To Jaworski, the goal of the plasma industry is not “donor altruism,” but increasing the availability and access to plasma-derived therapies for patients who need them. “The point of the plasma industry is to meet the needs of patients; it’s a piece of medical infrastructure, and thus the way we evaluate it is according to that metric … If you try to give it a different goal, that is not meeting the needs of patients, then that is wrong.”
A steady supply of source plasma from individual donors keeps patient healthy and ensures access to a lifesaving treatment for millions. As of 2022, nearly 1.26 million individuals in the United States relied on plasma-based medicines at least once, with over 16.5 million across the world, from burn victims to patients with autoimmune diseases — a population that would be impossible to sustain with alternative (non-compensated) models. Although the United States comprises just 5 percent of the global population that relies on plasma-based treatments, it accounts for 68 percent of the total supply because of this system. Without the U.S., the wellbeing of patients around the world would be at risk.
For patients like Richard and thousands of others who rely on plasma-derived therapies throughout their entire lives, this growing supply provides much-needed stability and security. Affordable and abundant access allows patients to live lives of dignity and independence. This is something that can’t be valued in dollars.
Jacob Fuller is the Advocacy Manager for the GBS|CIDP Foundation, a global nonprofit organization supporting individuals and their families affected by Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN) and related conditions.
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