Laurie Kelley

Hemophilia and War

Laurie Kelley October 25, 2026

In our struggles with insurance and access to treatment, we forget that some bleeding disorder patients in the world are struggling to survive war. I was moved by this account on Facebook. Sergiy Shemet is president of the Ukrainian Association for Hemophilia and Hemostasis, part of the Ukrainian Alliance for Hemophilia and Related Conditions (UAHARD). He lives in Dnipro, about six hours from the capital, Kyiv. You can only imagine the responsibilities he faces as his country has been under attack from Russia. Russia annexed Crimea in February 2014, and launched a full-scale invasion of Ukraine on February 24, 2022. While there have been many false starts in recent peace negotiations, an end does not look feasible yet. Despite the incredible challenges the population faces, including harsh winters, cuts in electricity and heat, and bombing, UAHARD has made progress. Funding for hemophilia programs has increased over the past five years; home therapy is practiced.

I often wondered what was the state of bleeding disorder patients during a time of war; Ukraine has been in the news constantly. Well, two members of the US community, very brave Tony Hernandez and Sochi Frank, flew to Ukraine last year to deliver factor. Sergiy writes about their remarkable visit. (Reprinted with permission)

HAEMOPHILIA AND WAR

On October 10, 2025, I woke up in the Kozatsky Hotel in the center of Kyiv and realized I couldn’t get out of bed or even make it to the bathroom. My first thought, of course, was: ****ing Russians. The day before, Russian missiles had struck downtown Kyiv, leaving the hotels without electricity or water. That’s why I hadn’t injected my factor VIII treatment. I couldn’t even wash my hands. A mistake. I crawled to the bathroom, looked in the mirror, and knew my plans for the day had changed completely. What worried me even more was how our guests from the U.S. had endured the night.

Back in spring 2025, I got a message from Tony, a stranger from Arizona, with an unusual proposal. He wanted to come to Ukraine with the mother of a U.S. Marine and volunteer, Ian Tortorici, who had been killed here. Ian was a Marine and only 32. Tony asked how possible such a trip would be and how best to organize it. His writing style was light and sincere, and we quickly became friends online. He’s cheerful and sociable; a writer with deep philosophical views, and like me, he also has hemophilia. The main purpose of the trip was to honor Ian’s memory. Ian’s mother, Sochi, wanted to come. She’s retired, a wonderful mom, grandmother, and great‑grandmother, and hemophilia runs in her family too. Tony and Sochi volunteer with Save One Life Inc., donating their own factor concentrates to people around the world. They wanted to see the country Ian gave his life for—and bring some factor VIII they had saved.

Ian’s girlfriend, Nadiia, who volunteers to support the front, also planned to come from Lviv. That’s how she and Ian had met.

From spring to autumn, the war in Ukrainian Donbas only worsened, but our new friends didn’t change their minds about coming. We only had to cancel the planned trip to Kramatorsk, where Ian had been killed by Russian shelling while having lunch in a café.

Because of the war and constant strikes on Kyiv, far fewer of my hemophilia friends remained in the capital. So our HemAlliance (UAHARD) colleagues helped organize the trip mostly remotely. The biggest emotional and organizational burden fell on Nina. At first, I hadn’t planned to go to Kyiv myself. Then I thought: damn it, yes. It would be heavy emotionally – something I’ve been avoiding lately. But why should Nina carry all the weight of organizing, meeting, and honoring Ian’s memory alone? That’s how I ended up in that hotel in October 2025.

Logistics had their own tragicomic twist: Tony and Sochi arrived in Kyiv on a third‑class train from Chișinău. Nadia met them, and in the evening Nina and I joined. We talked for hours at Veterano Pizza, where Tony loved the military décor; said it felt very American. Later we walked them to the Ukraina Hotel, which has several floors of bomb shelters. As we said goodbye, the sirens started. Of course. The night promised to be “fun.” And it was. By morning, downtown Kyiv had no power or water. I decided to skip my prophylactic infusion—a choice I regretted many times afterward.

We met Tony and Sochi on the way to the people’s memorial for fallen heroes on Maidan, where Ian’s flag and photo had already been placed. But our plans changed completely. On Maidan, we saw a ceremony honoring another hero—also an American—Kyzyl Bowden. Without discussion, we joined. I hadn’t known about the Weatherman Foundation, which helps honor fallen heroes in Ukraine and return their bodies to the U.S. The coffin was draped with two flags—Ukrainian and American. Kizil’s commander spoke simply and heartbreakingly.

Standing for over an hour, I felt my ankles giving out. But I kept standing, thinking: what use are ankles, when others give their whole lives for Ukraine?

After the ceremony, we went with our new Weatherman friends to the memorial on Maidan. Now Ian’s and Kyzyl’s photos stand side by side. I hugged Sochi and told her I didn’t know how she is keeping that. She looks so much like Ian.

We walked to the “FREEDOM” memorial near St. Sophia, also created thanks to the foundation. In the cathedral, we again witnessed a ceremony honoring fallen heroes, as happens so often in central Kyiv.

After that, I had to take a taxi back to the hotel, infuse my entire supply of factor, and rest until the next day. That day was supposed to be Ian’s official memorial with the Ukrainian military. But with both ankles wrecked, I couldn’t take part.

So, because of Russian shelling of Kyiv on October 10, I didn’t leave the hotel again until my train back to Dnipro. In the morning Nina brought factor she had “borrowed” from her daughter, who has severe von Willebrand disease. Luckily, that factor works for me too. Sadly, the reverse trick isn’t always true with VWD people.

We saw how genuine the best representatives of the American people are. They put freedom and principles above everything—even life itself—just like we Ukrainians do. “Freedom is not free,” Tony and I repeated constantly. They may dislike their president as much as we dislike ours.

They don’t call the war “this conflict.” They clearly see the aggressor and the need to resist. They don’t say “the “other side shelled Kyiv “—they say ****ing Russians.

They don’t claim both sides are equally guilty. Instead, they save factor VIII from their own families and carry it halfway across the globe to share with us. How different that is from some official organizations – like the European Hemophilia Consortium, which in a similar situation decided to… visit Russia.

It turned out I never said goodbye to Tony and Sochi. We had planned to meet again, and said “see you tomorrow.” But in the world of hemophilia, you never know what tomorrow will bring. Better not to make detailed plans or promises. In wartime Ukraine, most people live with that same hemophilia vibe.

Friends, we’ll meet again another time!

Visit www.uahard.org.

The Royal Disease

Laurie Kelley October 11, 2026

I’ve always been fascinated by history, especially Russian history, as it is so closely linked to hemophilia. Why? The last Tsar of Russia, Nicolas II, had a son with hemophilia. And it may have cost him the throne. That’s a whole history lesson, but you can read the short version of it in our book, “Alexis, the Prince Who had Hemophilia.” It’s meant for school-age children, but adults will enjoy it as a quick but informative read. And it’s free!

Speaking of quick reads, I love this infogram, recently posted by the Karachi Chapter of the Hemophilia Foundation of Pakistan. Well done!

Once you read our book and read this infogram, you will know why Prince Charles, and his heirs, do not have hemophilia. Read up!

¡Badwater Bravo!

Laurie Kelley September 27, 2026

We published a couple of blogs in August about superheroes and hemophilia—yes, Marvel Comics had some characters with hemophilia! And we have a couple of “superheroes” with hemophilia of our own:

• The late Barry Haarde, who cycled across the US six times to raise money for Save One Life.

• Tim Stowers who just swan the Catalina Channel for 16 hours to raise money for Save One Life.

• My boyfriend Doug, though he does not have hemophilia, at age 67 cycled across the country in homage to Barry to raise the most money for Save One Life.

• Chris Seistrup, who cycled unsupported from Banff to Mexico in a race—and won!

I thought I knew them all, but while watching a random movie on Kanopy, to get myself motivated to get more active, I heard the word “hemophilia” and I perked right up!

The movie “Badwater 135” is a documentary about the Mount to Coast Badwater® 135, a 135-mile non-stop ultramarathon known as the world’s toughest foot race. It takes place in Death Valley—that should tell you everything you need to know. Death Valley is one of the hottest places on earth. People without any medical issues have a difficult time running it, as the movie shows. It starts in Badwater Basin, Death Valley, California, at −282 feet below sea level, the lowest elevation in North America. It finishes at the Whitney Portal (8,300 feet, the trailhead to Mt. Whitney. This is brutal!

The movie profiles several runners, how they trained and why they run. “Hemophilia” was the last thing I expected to hear. But Ricardo Ramirez competed and completed Badwater 135, representing Mexico and is the first person with hemophilia to finish the world’s toughest foot race.

From Facebook, Ricardo “has been running ultras since 2011 and on his Badwater 135 application Ricardo listed strong completions of six 100-milers including Angeles Crest, Born To Run, and Kodiak. Also, he served on the support crew for Badwater 135 runners in 2018 and 2019. Ricardo also told us “I want to run Badwater 135 because I live with hemophilia, a genetic bleeding disorder which causes blood to not clot with spontaneous bleeding in joints such as knees and ankles. Spontaneous bleeds have prevented me from competing in various races throughout my running career. Most people living with hemophilia are afraid to be active but I have defied the odds and have proven that people can properly manage their condition. I dedicate myself to being active and want to show everyone that even with hemophilia I can compete in extreme sports such as the world’s toughest foot race.”

Watch the movie: it’s free on Kanopy (you just need a library card number), and be amazed! It’s so inspirational, courageous, outrageous and true! Ricardo: another hemophilia hero.

September Summary

Laurie Kelley September 13, 2026

I’m trying something new with HemaBlog: a quick rundown on what’s new this past month in the bleeding disorders community. New therapies are moving through clinical development, gene therapy remains an important—and increasingly complicated—part of the conversation, and major policy changes could affect access to treatment for some families. At the same time, greater attention is being paid to von Willebrand disease, rare bleeding disorders, and the long-overlooked needs of women and girls.

Here are several developments worth watching this month.

Gene Therapy Is Still Very Much in the Conversation

The past year has been challenging for hemophilia gene therapy, but hematologists have not lost interest.

A recent survey of European hematologists found that roughly 90% believe gene therapies will play a role in the future of hemophilia care. That is striking considering the commercial difficulties the field has experienced, including the discontinuation of some gene therapy programs and supply issues affecting HEMGENIX earlier this year.

The bigger question may no longer be simply whether gene therapy works. We now have to ask: Who is the best candidate? How durable will the effect be? What risks are acceptable? And will patients choose gene therapy when other highly effective treatments are already available?

Those questions will become increasingly important as gene therapy research continues.

Patients Like Their Treatments—but They Still Want Better

Another recent survey offers an important perspective from people actually living with hemophilia.

A Pfizer/Harris Poll survey of 1,000 people with hemophilia worldwide found that 84% were somewhat or very satisfied with their current treatment. But satisfaction did not mean that treatment burden had disappeared.

Participants still reported challenges such as declining venous access, difficulty being spontaneous, and treatment interfering with social life. When asked what might persuade them to change therapies, patients emphasized better effectiveness, easier administration and strong real-world evidence.

This reflects an important evolution in hemophilia treatment.

We once measured success primarily by survival and the prevention of serious bleeding. Today, patients are understandably asking for more: fewer bleeds, healthier joints, easier administration, freedom to travel and exercise, and less disruption of everyday life.

New Approaches to von Willebrand Disease

One of the most encouraging developments in bleeding disorders research is the growing attention being paid to von Willebrand disease (VWD). Hemab Therapeutics recently reported early clinical data on HMB-002, an experimental antibody being developed as a non-replacement treatment for VWD. In an early Phase 1/2 study, HMB-002 produced at least a 2.4-fold peak increase in von Willebrand factor and factor VIII. The treatment is being designed as a potentially monthly subcutaneous therapy rather than traditional replacement therapy.

These are early results and the study was not designed to prove clinical effectiveness. Still, the findings are interesting because they represent a fundamentally different way of approaching VWD treatment. Additional clinical data are expected later in 2026 or early 2027.

Medicaid Changes Deserve Attention Now

For U.S. families, one of the most consequential stories may have nothing to do with a new drug. New federal Medicaid work-reporting requirements are scheduled to take effect no later than January 1, 2027 for certain adults ages 19–64. Bleeding disorder organizations are warning that patients should begin preparing now.

CMS guidance recognizes that people with serious or complex medical conditions may qualify for exemptions, and bleeding-disorder advocates have specifically pushed for hemophilia and related conditions to be appropriately recognized. However, having a bleeding disorder may not automatically guarantee an exemption.

Patients who rely on Medicaid should keep their contact information current, carefully read notices from their state Medicaid program and discuss possible medical exemptions with their hemophilia treatment center. For a community dependent on extremely expensive, life-sustaining therapies, even a temporary loss of insurance coverage can be serious.

Women and Girls With Bleeding Disorders Take Center Stage

Recognition of bleeding disorders in women continues to grow internationally. This month the World Federation of Hemophilia highlighted Project Elevate Her, an unusual global awareness campaign led by mountaineer Maia Meier, who lives with Type 2A von Willebrand disease.

Meier is attempting the Seven Summits and a Last Degree ski expedition to the South Pole while using each expedition to highlight issues facing women and girls with bleeding disorders. Her September expedition to Manaslu focuses on a critical question: once a woman finally receives a bleeding disorder diagnosis, can she actually obtain appropriate care?

That question remains relevant around the world, where heavy menstrual bleeding and other bleeding symptoms in women are still too often normalized or overlooked.

And Globally, Access Still Matters Most

While much of the news in wealthier countries concerns gene therapy and sophisticated new drugs, the World Federation of Hemophilia offered an important reminder this month from Morocco. Long-term cooperation among the WFH Humanitarian Aid Program, the Moroccan Hemophilia Association, treatment centers, healthcare professionals and national authorities has significantly expanded access to treatment and comprehensive bleeding-disorder care there. It is worth remembering that for many people around the world, the breakthrough they need most is not gene editing or a new monoclonal antibody.

It is simply reliable diagnosis, access to treatment and knowledgeable medical care. And ultimately, that remains one of the central challenges facing the global bleeding disorders community.

Sources

Hemophilia Federation of America: Gene Therapy Remains Top of Mind for Hematologists

Hemophilia Federation of America: Latest bleeding disorders news and policy updates

Hemab Therapeutics: August 2026 clinical and corporate update

World Federation of Hemophilia: Project Elevate Her

World Federation of Hemophilia: Hemophilia care improvements in Morocco

Marvel-ous Hemophilia! PART 2

Laurie Kelley August 30, 2026

Our archivist Richard Atwood of North Carolina gave us such a great list of superheroes connected with bleeding disorders last time, that we needed a two-part series! And some of these are not superheroes, but characters in graphic novels. But we can argue that all kids with hemophilia are superheroes!

Unnamed Algerian Man

At a deserted beach in a hidden cove, a man from North Africa has a bleeding nose. He is a married jeweler, currently out of work, from the village of Tas’aout in Ath Yenni. The Algerian man spots a young woman skinny dipping, who then dies of unknown causes. Other families arrive at the resort beach. Several diseases are revealed. When two fathers remove the dead body from the water, one of them (a doctor) accuses the Algerian man with a bleeding nose of drowning the woman. No one can leave the beach due to an invisible force, and some of them die. The doctor punches the Algerian man, causing more nose bleeding. Those who do not die, significantly age.

This 2011 graphic novel titled Sandcastle is translated from the 2010 French edition Chateau de sable. The novel does not provide any explanations for the fast-paced aging by everyone on the beach. The nose bleeding, that lasts for hours, by the Algerian man is never diagnosed. When he is included in the script, his nose bleeds on 14 pages, while it does not bleed on 34 pages. Sound familiar? Maybe because M. Night Shaymalan’s 2021 movie Old is based on this novel. The movie script has a famous rapper with a blood clotting problem whose nose bleeds for hours at the resort beach. After a female swimmer is found dead in the water, the doctor stabs the rapper to death. Two survivors return to the resort to accuse the manager and the Warren and Warren drug company of murder. The pharmaceutical company had discovered this cove in which magnetisms and minerals cause cells to age rapidly. The drug company had been conducting observational trials of experimental medicines during one day—equivalent of a lifetime the unwitting patients—to see of the drugs were successful.

Hortense

Hortense is 14 and has hemophilia (hemophile). She thinks her name is precious and ancient. She describes hemophilia as her body wanting to completely empty itself when the blood flows uncontrollably. She likes bloodstains on her clothes and she records her bleeds. She bled when losing a baby tooth. Her father calls her nose une champlure (or un robinet, a tap), when the real term is chantepleure. From the age of nine, Hortense carries tampons in her backpack for nose bleeds, thanks to her mother. Her parents want to protect their daughter by covering her in bubble-wrap (papier bulle). Hortense cannot play contact sports, yet she wants to practice martial arts, especially karate, like her brother does. She practices her moves, then paints them. She is artistic. In class, Hortense has her first period. She already has the tampons that must be changed hourly. She calls the hematologist for a prescription of des coagulants. Hortense considers herself a karateka-ninja-hemophiliac-teenager in bubble wrap.

This 2023 novella for young adults titled Papier Bulle is written in French. The title translates as Bubble Wrap. The text, told from the perspective of a 14-year-old girl, is notable for its artwork that bleeds through every page.

Isabel

During the Renaissance, the young Marco Tulio of the noble house of Padutti de Verona has sworn a secret oath with his beautiful distant cousin Isabel. The couple seal their romantic ceremony by pricking their fingers with a rose stem before mixing their blood. Tragically, Isabel is found to be hemophilic with unstoppable bleeding. Fortunately, her family knows Leonardo da Vinci who is able to stop the bleeding. However, the evil vampire Tristan de Padua, lord of the castle of Montenero, convinces Marco that Isabel can be forever cured if she were to be bitten on the neck. This deception results in her death. Isabel is then not holy, and cannot be buried in the cemetery. Marco grieves for five years, then plots his revenge. He confronts the evil vampire with accusations of murder. When Tristan sinks his fangs into the neck of Marco, the vampire suddenly dies because Marco has poisoned his own blood. Then tragically, Marco takes his own life. In their honor, Leonardo da Vinci sculpts a monument of the two young lovers holding hands over their burials surrounded by red roses.

This 2007 young adult picture story titled Jovenes Vampiros is written in Spanish and is based on the author/illustrator’s imagination. The type of hemophilia is never revealed, nor is the treatment suggested by Leonardo da Vinci ever explained.

Louis

Louis, who has hemophilia, is mocked by his friends for not participating in dangerous activities. The five Medikidz, who live on the planet Mediland, are medical superheroes who use their superpowers to teach kids about their disease. The Medikidz view the situation on the Medi-Vision, then use the teleport to transport Louis for an education experience. Among the explained issues are the blood clotting problem, the diagnosis and severity of hemophilia, various treatments, and different types of bleeds. The comment is made that hemophilia can seem scary. Yet with needed injections, Louis realizes that he can be like everyone else. He is teleported back to Earth where he retells his adventure concerning his genetic disorder.

This 2011 educational comic book titled What’s Up with Louis? is one in a series written by a team of medical personnel and then peer reviewed. The proceeds from the sale of the comic books assist an international children’s charity for medical education. The English edition has the haemophilia spelling, and replaces rugby for American football as an unacceptable contact sport, yet still has left-hand drive automobiles. It also has The Haemophiia Society logo on the back cover. The American edition is sponsored by Novo Nordisk.

Sam Atlas

Sam Atlas wears the pre-adolescent uniform of a hoodie and a backpack. He loves all things involving outer space, and always carries a telescope that he names Galileo. Sam wants to attend a week-long, out-of-town, and overnight Space Camp, but is afraid to ask his parents because he has hemophilia A. Sam treats with Hemlibra. When the sun in the Hemora Galaxy explodes, sun shards are sent in all directions—one even hits Sam’s notebook on Earth. The Stellar Guardians, who protect Hemora Galaxy, enlist Sam on a travel quest with obstacles on other planets to find five sun shards that will reforge the sun to save Hemora. Sam, under the guidance of the Guardians, travels by spaceship, by hiking, and by pedaling a hovering bicycle. Along the way, he learns several lessons: finding the power of his own voice to speak up for himself; finding the emotional courage to face his fear and keep going; and always being prepared and expecting the unexpected. Before completing his quest, Sam stops at the Injection Junction to refuel. After reforging the Hemora sun, Sam returns home to ask his parents about Space Camp, and, at school, he helps a new student with hemophilia A.

This 2025 educational graphic novella titled Stellar Guardians, that is sponsored by Genentech, uses the same travel quest plot used by Homer for Ulysses returning to Ithaca. The fictional story is a means to instill confidence and self-advocacy in younger individuals with hemophilia A. The concept of universal precautions is not stressed, while the main character does wear a modified space helmet when riding the hovering bicycle. The book includes a two-page Important Safety Information Section for Hemlibra, a Genentech product. A Spanish edition is available. The graphic novella is not labeled for age and reading-level appropriateness. The author and the illustrator are not identified.

Conclusion

Graphic novels and comics are popular by readers of all ages. This literature serves several purposes. Mostly there is entertainment, while some of the literature is justified as being educational. Hemophilia is represented by a variety of fictional characters: such as heroes, evil adversaries, evil geniuses, plus men and women of all ages. Some of these characters are just ordinary individuals, but, if you look closely, you may identify some superheroes.

References:

Jose Aguilar, Jovenes vampiros. El códice secreto. versos y trazos, 2007.

Anonymous, Stellar Guardians. Genentech, 2025.

Scott Beatty, Wonder Woman: The Ultimate Guide to the Amazon Princess. DC Comics, 2003.

Simon Boulerice et Eve Patenaude, Papier Bulle. Alice Jeunesse, 2023.

Kim Chilman-Blair and Shawn DeLoache, What’s Up with Louis? Medikidz Explain Haemophilia. Medikidz, 2011.

Garth Ennis, The Punisher Presents Barracuda. Marvel, 2007.

Jennifer Grunwald, Marvel-Verse: Morbius. Marvel, 2021.

Fabian Nicieza and Tom DeFalco, The New Warriors: Beginnings. Marvel, 1992.

Frederick Peeters and Pierre Oscar Levy, Sandcastle. SelfMadeHero, 2011.

Kelley Puckett and Warren Pleece, Kinetic. DC Comics, 2005.