Plasma donors have a lasting impact on those of us with hemophilia

On Nov. 19, I had the privilege of participating in a panel at the Plasma Protein Therapeutics Association’s Plasma Protein Forum in Washington, D.C.

Robert F. Sidonio Jr., MD, a pediatric hematologist-oncologist, joined Nikole Scappe-Hagen, the National Bleeding Disorders Foundation’s manager of education, and I to lead an engaging roundtable discussion on von Willebrand disease, merging insights from both patient and physician perspectives. My participation led me to reflect on the profound power of plasma donation and the transformative impact plasma-derived therapies have had on my life.

For many people, including me, with bleeding disorders such as hemophilia and von Willebrand disease, treatment depends heavily on plasma-derived products. These therapies are essential for preventing and managing bleeds, and their existence is entirely thanks to the generosity of plasma donors.

Recommended Reading

September 20, 2023 News by Andrea Lobo, PhD

FDA clears for use plasma product to help monitor FVIII activity

My personal connection to plasma-based treatments

My first experience with plasma-based treatments came as a child during knee surgery. To prevent excessive bleeding, I received fresh frozen plasma, platelets, and cryoprecipitate. At the time, I didn’t fully understand the significance of these treatments or the donors behind them. Yet they were critical to my recovery.

As I grew older, my treatment for von Willebrand disease transitioned to Humate-P. Like many other clotting factor concentrates, Humate-P is made from pooled plasma donations, requiring contributions from countless donors to produce even a single dose.

Every vial of clotting factor represents the collective generosity of donors. Plasma-derived therapies such as Humate-P remain a lifeline for many, and the generosity of plasma donors continues to play a vital role in ensuring access to these lifesaving treatments.

In recent years, newer therapies have emerged, many of which no longer rely on human plasma. While these innovations represent incredible progress in treatment options, I’ve chosen to stick with my plasma-derived therapy because it works well for me.

What plasma donation means

Plasma, the liquid component of blood, is rich in proteins essential for clotting and other critical functions. For those of us with hemophilia or von Willebrand disease, these proteins — such as clotting factors VIII or IX — are often missing or insufficient. Plasma donors provide the raw material needed to produce lifesaving clotting factor therapies.

The impact of plasma donation is far-reaching. Donors empower children to attend school without fear of debilitating bleeds, enable adults to pursue their careers and passions, and provide families the ability to enjoy life’s simple joys without constant worry. Plasma donors may never meet the individuals they help, but their contributions leave a lasting, positive impact on countless lives.

Gratitude

To all plasma donors: The next time I infuse Humate-P, I’ll pause to give thanks for you. Your selflessness, time, and compassion make a world of difference. You’re not just donating a part of yourself — you’re giving me the chance to live a fuller, healthier life.

You’re the unsung heroes of the hemophilia and von Willebrand disease communities, quietly making the extraordinary possible with each donation. Your kindness and generosity ripple far beyond the act itself, creating hope and changing lives where it’s needed most.

For that, I’m endlessly grateful. Thank you for being the lifeline we rely on.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.