Reflecting on the most-read hemophilia stories of 2024

Why these columns resonated with the bleeding disorders community

I have to admit, I was captivated by Hemophilia News Today‘s Facebook page during the final days of December, eagerly following its countdown of the year’s top 10 most-read columns. It was an incredible honor to see that my columns secured eight of those 10 spots. Each one represents a story close to my heart, and I’m excited to share a few highlights with you and why they resonated so deeply with both me and the hemophilia community.

A tribute to Michaela and Elaine DePrince

Topping the list at No. 1 was my column paying tribute to Michaela DePrince and her mother, Elaine.

Michaela, a world-renowned ballerina, died Sept. 10 at age 29, just a day before her adoptive mother, Elaine DePrince. Michaela’s journey from being a war orphan in Sierra Leone to rising to international stardom was marked by resilience and talent. Elaine, a mother and advocate, chronicled her family’s challenges with hemophilia and the loss of two of her adopted sons to AIDS from contaminated blood products in her 1997 book, “Cry Bloody Murder: A Tale of Tainted Blood.”

Several readers reached out to me personally after reading the column, sharing their thoughts and memories of Michaela and Elaine. It’s clear that Elaine was a deeply influential and cherished figure within both the hemophilia and HIV/AIDS communities. The loss of Michaela is undeniably heartbreaking and an immense tragedy.

Reflections on a film about the ‘tainted blood’ era

Coming in at No. 3 was my column covering “On the Shoulders of Giants,” a film by Believe Limited.

The film documents Wayne Cook — a grandfather with hemophilia and president of the Coalition for Hemophilia B — as he journeys across the U.S. to reconnect with fellow survivors of the tainted blood era, when contaminated blood supplies led to widespread HIV and hepatitis infections among hemophiliacs. The film highlights their shared experiences, the profound impact of these tragedies, and the enduring bonds within the community.

As someone diagnosed with hemophilia B and von Willebrand disease in 1975, and having been involved with Camp Heartland — a camp dedicated to children affected by HIV/AIDS — I connected with the film on a deeply personal level. I hope my column inspired others to watch it.

My response to WHO’s controversial guidance

At No. 4 was a column inspired by host Patrick James Lynch’s comments on an episode of the BloodStream Podcast.

Lynch passionately called on all of us with a platform to address the World Health Organization’s controversial decision to list cryoprecipitate as an essential medicine for hemophilia A and von Willebrand disease, excluding safer factor concentrates.

Cryoprecipitate, a treatment I relied on in the 1970s and ’80s, posed significant risks, including exposure to HIV and hepatitis C. While we’ve made incredible strides in medical advancements, this backward step in treatment guidance is concerning. I used my column to echo Lynch’s call to action and advocate for patient safety and modern standards of care.

Reflecting on these hemophilia stories and their profound impact, I’m reminded of the power of storytelling to connect, educate, and inspire. I am truly grateful for the opportunity to share these moments with you.