When Shellye Horowitz was younger, she had a clear link to the rare disease community: her father. He had hemophilia and, much like many patients, relied on blood clotting factor replacement products to protect himself. But then came the AIDS epidemic. As HIV began to spread, people wondered how it would impact themselves or their loved ones. Shellye’s father continued using his factor products, as did many patients with hemophilia. Unfortunately, Shellye states that an estimated 90% of patients with severe hemophilia also contracted HIV. Now, with COVID-19 sweeping the country, Shellye worries that we lack enough information to adequately protect people with bleeding disorders. More understanding is needed on the intersection between hemophilia and COVID-19.
Hemophilia
Hemophilia is a genetic bleeding disorder in which blood does not clot properly. Normally, blood cells collect and clump together to form a clot, which stops bleeding and protects an injury. But when someone lacks enough clotting factors within the blood, clots do not form well, meaning that an injury can bleed longer and more intensely.
There are two main forms of hemophilia. The first is hemophilia A, or classic hemophilia, in which people lack clotting factor VIII. The second, hemophilia B, or Christmas disease, stems from a lack of clotting factor IX.
Symptoms include large bruises, bloody urine or stool, random nosebleeds, joint pain and swelling, prolonged bleeding following injuries or surgeries, headache, vomiting, fatigue, and neck pain. Learn more about hemophilia.
Hemophilia and COVID-19: Safety Plans
Adequate education and awareness on hemophilia and COVID-19 starts in the medical community. Admittedly, COVID-19 is still a mystery for many people. Each and every day, doctors are discovering new things about the virus. For example, more children are presented with signs of an inflammatory response similar to Kawasaki disease. Doctors find more patients in their 30’s having strokes as a response. Even more critically, small, dangerous blood clots are increasingly found in patients with severe COVID-19 reactions.
So, how do we ensure that people with hemophilia stay safe during the pandemic? Well, says Shellye, the first step is working to reduce or stop infection on a wide scale. This starts with extended isolation or sheltering in place. Although this is not a social option and can be difficult in its own right, it keeps those with higher health risks safe.
Next, researchers should seek to understand the relationship between hemophilia and COVID-19. Gaining additional insight into this novel virus will inform potential treatment options if someone with hemophilia also develops COVID-19.
Blood Thinners: A Complication
One recent COVID-19 finding is the development of small, clustered, and serious blood clots. Now, recommendations for hospitalized patients with COVID-19 include the use of blood thinners.
For Shellye, this brings up a multitude of questions. First, can patients with hemophilia still develop these deadly blood clots? If so, what does this mean for the development of their condition? If not, does that mean patients with hemophilia are protected from this COVID-19 complication? Further, are patients with hemophilia and COVID-19 who previously took prophylactics or factor products now more at risk of clotting because of their medications?
Unfortunately, we don’t know the answers. So for now, Shellye believes that the best way to tackle this pandemic is through social distancing, hand-washing, and carefully protecting the people we love.
