Hemophilia has been a constant thread in my family’s story. Some of my earliest childhood memories are of my father’s weekly plasma treatments . It was a regular part of our family’s daily life, but looking back, I realized those treatments weren’t just routine, they were his lifeline.
Today, in honor of my father, I am focused on strengthening California’s plasma donation system and ensuring all patients, particularly those with rare diseases, have access to the life-saving medicines they need. California now has an opportunity to increase plasma donation efforts. State Assemblyman Luis Solache recently introduced the California Source Plasma Donation Centers Act, which would modernize regulations in the state to align them with those at the federal level.
My late father, Jim Carey, was born in 1940 as the youngest of three brothers. All of them were born with hemophilia B — a hereditary bleeding disorder that prevents blood from clotting properly. When my father was diagnosed, the difference between hemophilia A and hemophilia B had not yet been discovered. Like so many other people with hemophilia at the time, he endured unpredictable bleeding episodes and limited treatment options. He relied on frequent infusions of plasma or whole blood to treat bleeding episodes. but the early treatments caused excruciating pain, joint damage and life-threatening complications.
In the1950s, patients like my father benefitted from scientific breakthroughs: Researchers identified the two types of hemophilia, leading to the development of replacement therapy — a treatment that extracts specific clotting factors from donated blood and plasma. This approach remains a very effective treatment option for patients today.
Now, decades later, one of the greatest challenges in treating hemophilia is that patients develop inhibitors: antibodies that interfere with treatment and trigger frequent bleeding episodes. However, advancements in plasma-derived clotting factor therapy have been shown to lower the risk of inhibitors by 50 percent. This helped extend my father’s life, though not before he endured the devastating loss of both his brothers to hemophilia-related complications.
Determined to create change, my father became a passionate advocate. In 1971, he joined the board of the newly formed Central California Hemophilia Foundation, serving as board president and later as treasurer until his passing in 1994. For him, advocacy was not just a profession, it was deeply personal. He knew firsthand what was at stake.
I have carried his legacy forward, first as the executive director of the Central California Hemophilia Foundation and now at the Hemophilia Council of California . To honor his lifelong commitment, we established the Jim Carey Scholarship, supporting young people in the bleeding disorders community who, like my father, refuse to let their condition define their lives.
My father’s passion inspires my own. I still remember him testifying at the State Capitol, advocating for patients like himself. Today, our fight continues. Plasma is essential for everyone, but even more so for those affected by diseases that can only be treated with plasma-derived medicines, like Guillain-Barré syndrome and von Willebrand disease. Plasma is also used to help patients recover from trauma, pregnancy complications and burns. Unfortunately, despite its necessity, plasma remains an often-overlooked resource.
Unlike many medicines, plasma cannot be manufactured in a lab. It is entirely dependent on donors. A single patient with hemophilia A may require 1,200 plasma donations each year for treatment. That means thousands of generous donors are needed to sustain just one life.
That’s why I continue my father’s work, fighting for policies that strengthen our plasma donation system, increase access to treatment and ensure no patient is left behind. It’s why I support the California Source Plasma Donation Centers Act. It would allow source plasma donation centers to operate more efficiently, making it easier to collect this unique, irreplaceable resource so that more patients like my father who depend on plasma-derived medicines receive the life-saving treatments they need, when they need them.
Decades ago, I watched my father rely on plasma donations to survive. But this isn’t just my family’s story, it’s the story of every Californian whose life depends on a reliable, sustainable plasma supply.
Lynne Kinst is the executive director of the Hemophilia Council of California and founder of the California Rare Disease Access Coalition.
