Protecting Hemophiliacs from the Unknowns of COVID-19

Shellye Horowitz avatar

by Shellye Horowitz |

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institutional bias, progress, factor level testing, diagnosis

Our hemophilia community has been here before. A novel virus — previously, it was HIV — hit the world, and our community was uncertain about how it would affect us. Patients were told to turn to doctors for help and guidance, but the information each patient received varied widely.

My father was told at the time that HIV wasn’t a problem, and he didn’t need to worry because only a small percentage of those infected would develop AIDS. He was told to keep taking his factor products to help his blood clot when he had an active bleed. His tainted factor products. 

Doctors at a few clinics were worried. They told their patients not to use factor products, and they reverted to alternative treatments for bleeding episodes. No standard of care was connected to what was then a new virus, and doctors saved some lucky patients from HIV infection.

Yet 90% of those with severe hemophilia at the time had medical professionals who did not have the knowledge they needed to protect their patients from contracting HIV. By the time these doctors truly understood the virus and the damage it caused, it was too late. Eventually, an estimated 90% of people with severe hemophilia contracted HIV. Many of our loved ones perished. Our community was devastated.

Let’s not repeat history

Today, our community has the opportunity to take a different path. The medical professionals serving our community now, most who were not yet practicing medicine in the early 1980s, can chart a new course. We can make sure our communities take an abundance of caution with COVID-19 until the scientific and medical communities really understand the virus. Our community can take a strong stand to ensure our loved ones with bleeding disorders are kept as safe as possible.

Safety first

Because the coronavirus that causes COVID-19 is new and there are so many unknowns, the safest option our community can implement is to prevent infection. This means that members of our community should view everyone with bleeding disorders as a group that has a greater risk for COVID-19 complications.

As a result, the group would need to implement safety plans similar to others in high-risk groups, such as sheltering in place for an extended length of time. This would be necessary until researchers understand how COVID-19 interacts with bleeding disorders and how to safely treat a person with a bleeding disorder who contracts COVID-19.

Not long ago, our community was told that those with bleeding disorders are not at greater risk of contracting COVID-19, unless they have inhibitors, because inhibitors are an autoimmune disorder. However, we may not yet know if those with bleeding disorders will have more severe complications if they do contract COVID-19.

Coping with a novel virus means we must understand that knowledge is constantly evolving. As knowledge evolves, so do recommendations.

New information has been shared that describes clotting complications for people with serious cases of COVID-19. In response, according to news articles, some guidelines now recommend that hospitalized COVID-19 patients be placed on blood thinners, unless contraindicated.

What does that mean for a person with a bleeding disorder? Is it possible for someone to bleed excessively and form deadly clots simultaneously? Is having a bleeding disorder protective of COVID-19 clotting? Does being on prophylactic treatment to avoid bleeding episodes place a person with hemophilia at greater risk of clotting? The bottom line is that scientists and medical professionals are trying to figure it out, but they do not yet have all the answers.

To me, one thing is clear: With the clotting unknowns, our community is safer if it does all it can to prevent its members from contracting COVID-19. Until we know more, it is our responsibility to hunker down and prevent infection and spread among our blood brothers and blood sisters. We want to assure everyone that we will not repeat the pain of losing so many loved ones in our community. I hope our medical professionals and advocacy organizations will take this stance.

As we learn more, we will be able to make better decisions. Until then, let’s use an abundance of caution. When we are able to gather again, we don’t want gaping holes in our hemophilia family. 

Stay safe and sanitized!

This column is dedicated to my father. We must never forget the pain that HIV caused. As a community, we must vow to make different and protective choices for all of our loved ones with bleeding disorders.


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 Services, and are intended to spark discussion about issues pertaining to hemophilia.


Mary Haugen avatar

Mary Haugen

thank you. I feel this is very important andam glad to read this.

David Clark avatar

David Clark

Thanks Shellye, I think this is good advice.

Kelly Rivas avatar

Kelly Rivas

My son has Hemophilia Type A Severe. I sent him to school where I believed they would have kept him safe. He contracted COVID. I am DEVASTATED AND PISSED!!! He did have his vaccination prayerfully, but he was within his 10 day window when he contracted it. He is on a 504 I'm learning my rights and the law against protecting my child while at school. Social distancing is not being exercised at this school because the school district does not deem it necessary. there are 30 kids in the classroom.....I feel very stuck.....

Shellye Horowitz avatar

Shellye Horowitz

Kelly, I am so sorry you are experiencing this, and I wish him a speedy recovery. Schools all over the USA are trying to balance the benefits of in-person learning with the COVID safety realities. I know the transmission is higher in schools without mask mandates, but even so, kids are picking it up at school and in sports/ other activities. One thing I find hard is the diversity of opinions towards COVID and safety, which makes it a bit challenging to develop and enforce policies in schools - they are also constantly evolving (just my experience as an educator).


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