A Whole New World

When my son, Adam, was one-and-a-half years old, we were having problems with his factor not being very effective. Our local hemophilia treatment center (HTC) hadn’t told me there was more than one brand of factor, so I thought this was the best we could do. Rather than refer me to another product that might be more efficient, they kept increasing Adam’s dosage. That meant more money and a lot more needle sticks in Adam’s arm.

Meanwhile, the HTC had mailed me information about the World Federation of Hemophilia meeting that was going to be held in Washington DC. I decided to go. I wanted to know why the pharmaceutical company was selling me factor that wasn’t working well for my child, and what they were going to do about it. Again, I erroneously assumed that the factor we were using was the only one out there.

When I got to the conference, it was initially a little overwhelming. Thousands of people were there. But there was so much information available I couldn’t absorb it fast enough. The conference had a display area, so I walked up to the first booth that was selling product. Because I thought there was only one product on the market, I assumed it was mine. I started saying, “I’m really disappointed. My son is using this factor and it’s not working...” That’s when I found out that there was more than one product out there—that we had a choice!

Once you go to a meeting, whether it be worldwide or a national meeting, you realize what a wealth of resources are available to you and your family. I met several representatives from the company that is now CSL Behring. That’s when I switched product and started forming a relationship with the product supplier. One representative recognized my frustration with the treatment center for not telling me there were other available treatment options. But while I was really upset at the HTC for not giving me the information I needed, I was thrilled that they had informed me about the meeting. If I hadn’t gone, it might have been a long, long time before I learned all that I did. By attending this conference, a whole new world opened up.