Choosing Which Factor Products to Use Was a Community Effort

Early in the life of our son “MacDonald the Elder,” we came face to face with one of our first major medical decisions: deciding which factor product to infuse. By the time our firstborn was 2, we had chosen our hematologist, survived a first bleed, and taken a trip to the emergency room.

Deciding which product to infuse seemed way out of my wheelhouse. Doctors made us aware of the different medicines on the market and suggested their preferences. But when push came to shove, we had to decide for ourselves.

My wife and I handled this issue like all the other ones related to hemophilia. We researched and found as much information as possible. We found internet articles and asked for the opinions of our friends in the hemophilia community. We knew that many of them had older children and had experienced firsthand the differences between first- and second-generation products.

This was an important distinction, because second-generation factor VIII products were made differently to remove dangerous pathogens contained in first-generation products. So, the knowledge of families who had used both proved valuable to us when we made our decision.

Searching the internet for medical options was valuable, but it still required my wife and me to set boundaries. We dove into the sea of the web, knowing that not all websites contained accurate information. If something looked interesting, we relied on friends and medical professionals to affirm the reliability of the information. We found that while most companies do their best to distribute accurate data, several were chasing a sale. When I saw a company that offered the moon, I was skeptical.

Another resource we found helpful were the various sales representatives working for medical manufacturers. We developed close relationships with them during those first two years in the hemophilia community. We learned whom to trust and whom to remain skeptical of.

While the internet provided great information, the sales reps, who were personally familiar with the products, had firsthand knowledge that couldn’t be found on Google. They knew many patients who used their factor products and who could speak from personal experience about reactions to, and possible complications from, each medicine.

Being equipped with information from doctors, friends, and sales representatives helped us make the best choice for our son. When we made a decision about which factor product to use, we spoke with our healthcare team again to receive their input. With our decision supported by experts in the field, we switched our son from a first-generation product to a second-generation one that was free from the dangers of contaminated blood.

An important detail in our decision was that our son had come into the world about three years after what is known as the “hemophilia holocaust.” In the early to mid-1980s, many members of the bleeding disorders community became infected with HIV and hepatitis B and C due to contaminated blood. To address this painful national crisis, a nationwide requirement was put in place to test the blood supply, and blood and plasma donations were required to clear certain medical hurdles before being used in the general population.

Our transition to second-generation factor VIII proved remarkably successful. I am confident that our research gave us the best information to treat “MacDonald the Elder.” He thrived with the new product, and we appreciated our medical team for working with us and guiding us to make the best decision for our stinky boy. We breathed a sigh of relief and thanked everyone who spoke with us about our son’s health.

They say it takes a village to raise a child, and I am confident that our community rallies around its members to help families receive the best care for our children. We learned that we are not alone. My gratitude goes out to a very loving population that, together in heart and mind, remains steadfast in its love and care for the families living with bleeding disorders. You are amazing!

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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.