Should you bring hemophilia medication to the hospital?

For those of us living with bleeding disorders, a critical question often looms large: In the event of an emergency, if we rush to the emergency room (ER), will the hospital administer our own factor treatment or will we be forced to use theirs? On the surface, it might seem like a straightforward question, but the reality is far more complicated. The answer? It depends.

Not bringing your clotting factor with you can be risky. If the hospital doesn’t have your specific medication, you might be forced to use a less effective alternative or, worse, face delays while waiting for the right product.

However, bringing your own factor also has its challenges. Many hospitals have strict policies against using medication brought from home, which can leave you in a difficult and potentially dangerous situation.

In my experience, my local hospitals present a frustrating paradox. They neither stock my factor nor allow me to bring my own. This policy is one of the reasons I learned to self-infuse. I have zero confidence that my local hospital will manage a bleed properly, which is why my emergency plan involves getting to a larger hospital in a nearby city if I’m physically able to.

Recommended Reading

July 18, 2024 Columns by Joe MacDonald

Remembering treatment protocol when an emergency occurs

Advice from an advocate in the community

I’ve previously written about Darlene Shelton and the organization she founded, Danny’s Dose, which was named after her grandson Danny, who was diagnosed with severe hemophilia B in 2011. Shelton aims to update emergency protocols for chronic illnesses and rare diseases by working with local emergency medical services. After reading my column, Paul Clement, a respected science writer in the hemophilia community, contacted me to offer another perspective.

Clement, who spent years working as a high school science teacher as well as volunteering with the Hemophilia Foundation of Southern California and serving on the board of the Hemophilia Council of California, emphasizes the importance of being prepared.

“Anyone with severe hemophilia who doesn’t have a nearby ER capable of handling their condition needs to be on prophylaxis,” Clement said, referring to preventive factor treatment. “Parents in this situation should learn venipuncture or consider having a port implanted in their child.”

He continued: “For those with hemophilia A, a subcutaneous medication like emicizumab [marketed under the brand name Hemlibra] can be a game changer. You cannot rely on emergency medical personnel to administer factor. Many ambulance crews are staffed by EMTs [emergency medical technicians] who are not trained or authorized to administer IV drugs. Even if you are close to an ER, it’s crucial to inquire about their policy on ‘brown bagging,’ a term for bringing your own factor. Many hospitals prohibit this practice, and smaller hospitals may not stock factor at all.”

Surgery

Regarding scheduled surgeries, the situation can be just as unpredictable.

I’ve faced several planned surgeries where the approach varied significantly. For a hysterectomy and hernia repair, I was instructed to bring my factor. I carried a large duffle bag filled with over $200,000 worth of BeneFix (nonacog alfa), a recombinant clotting factor therapy, and Humate-P, a treatment for hemophilia A and von Willebrand disease, to the hospital. Upon arrival, it was taken to the hospital pharmacy and administered to me during my weeklong stay.

These situations often filled me with apprehension. I couldn’t always be certain that hospital staff would correctly prepare my factor.

Colonoscopies have been a different story. I’ve had several of them due to bleeding, with varying protocols. In more than one case, I was required to stay overnight in the hospital to monitor for complications, and the hospital provided my medication. In other instances, I’ve been asked to self-medicate either ahead of time or after the procedure, especially if biopsies were involved.

Navigating emergency and surgical care with a bleeding disorder requires a level of preparedness and vigilance that can feel overwhelming. The inconsistencies in hospital policies and the varying levels of expertise among medical personnel add layers of complexity to an already challenging situation.

While we hope for the best in every medical encounter, it’s essential to advocate for ourselves, stay informed about hospital protocols, and have a clear plan in place. Ultimately, our health and safety depend on our ability to take control of our care, even in the most daunting circumstances.

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