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James' Story

 


James is a former
plasma-product user.


Meet James, a 46-year-old accountant with hemophilia A who has seen tremendous changes in the way hemophilia is treated for him. One difference: living with hemophilia does not restrict him as much as it once did. Hemophilia is just one part of his life now, a part that—with help from ReFacto—he can manage.

James discovers self-infusion

Another thing that has changed is the advent of self-infusion. For many years, James treated his hemophilia "on demand" and did not self-infuse. Then, during a visit to another city, James had to make a visit to an emergency room to treat a bleed. As he was giving his complete medical history to an unfamiliar medical technician, he realized that this was delaying his treatment. Soon after returning home, James looked into self-infusion.

James changes to ReFacto

When James was attending a conference in November 2004, he sat in on a session during which ReFacto and the Rapid Reconstitution (R2) Kit were presented. James was impressed. The next day, he attended the session again, spoke to the representative, and obtained more information. When he returned home, he had a conversation with his doctor about trying ReFacto.

"My doctor trusts me and trusts my judgment on what I feel would be the best course of action for my treatment," James states. "When I told him about ReFacto, he didn't hesitate at all about it. He just basically called in a prescription for it."

When James changed to ReFacto, he also made the change to self-infusion after proper training from his health care provider. He remembers the first time he self-infused with ReFacto: "My reaction was emotional. I recall a smile coming over my face because this was not as hard as I thought. I just said to myself, 'I can see doing this a couple of times a week instead of once every 2 or 3 weeks.' The process was just a lot simpler."

Now that he self-infuses, James also finds himself infusing more often. Sometimes he infuses in response to a bleed in progress, and sometimes he infuses preventively when he anticipates a bleed. "I infuse more with ReFacto because of the simplicity of the needle-less reconstitution. It does not take me nearly as long to put all of the product into play," says James. "I can infuse myself now in about 15 minutes, whereas in the past it could take 45 minutes to do it."

The features of the R2 Kit and ReFacto

When he first tried the R2 Kit, the needle-less reconstitution device for ReFacto, James was impressed with how few steps were involved. He added up all of the steps it took to infuse with his previous factor replacement product and compared the total number of steps with ReFacto and the R2 Kit: the R2 Kit took almost half as many steps.



Today, James sometimes thinks about life before ReFacto and life after ReFacto. When he describes the before time, he uses terms like "cumbersome," "inconvenient," and "time-consuming." Ask him to talk about life after ReFacto, and he is likely to tell you that it is "more convenient."

The value of viral safety

While viral safety is important to everyone who uses factor replacement products, James has a particular appreciation for the viral safety of ReFacto. He was on cryoprecipitate for 15 years and then on a plasma-derived product for another 22 years.

When James changed to ReFacto, part of the reason was the viral safety: "The value of the viral safety [of recombinant product] is immeasurable. I've lost 2 brothers to contaminated product. I myself have been infected by contaminated factor replacement product," says James. "But I have not been as concerned about viruses since I have been using ReFacto."

The hemophilia community

When James was growing up, he felt at times as if he were the only one living with hemophilia. He knew that his brothers and a cousin also had hemophilia, but outside of his family, he knew no one else with hemophilia. James visited his health care professional for infusions and never went to a hemophilia treatment center. He knew the health care professional also treated 2 or 3 other boys with hemophilia, but he didn't know them and they didn't know him.

Within the past few years, James has discovered the greater hemophilia community. "I began to interact more over the last 3 years and realized that now there are all kinds of resources out there to make sure you get the product and the care you need. I went to a couple of meetings and started seeing people who are truly the community," James says. "I even took my wife to a meeting. She never realized what hemophilia meant until she saw people who were impacted in a way that I never was. It has made a significant difference in both of our lives to know that there is a compassionate community of people living with hemophilia."

If James had his way

If James had the power right now to improve hemophilia therapy, it would most likely be in the area of access. He sees the need for greater access to product, greater access to hemophilia treatment centers, greater access to education, and more help for people who lack health insurance or who have reached the caps on their health insurance policies.

James knows about programs like the Wyeth Factor Resource Program™. Although he has been fortunate enough not to need them, James feels better knowing these programs are in place should he ever have to take advantage of them.

Advice for travelers

After visiting Las Vegas without his factor replacement product and needing an infusion, James offers one important piece of advice for people with hemophilia: "Don't forget your medicine," he advises. "Have your proper medication. And keep it accessible. If it's something you can infuse yourself, and if you can infuse in a short period of time, it certainly makes traveling a lot easier."

To make the experience of travel even more enjoyable, James recommends considering a product, like ReFacto, that can be stored at room temperature until reconstitution. He also advises travelers to pick a factor replacement product with a large vial size to minimize the number of vials needed for one infusion. For additional convenience, James suggests a factor replacement product with a low volume of reconstituted product, to put less pressure on veins with every infusion, and to keep infusion times short.

ReFacto helps make James' life simpler

According to James, "ReFacto brings more features to the table in terms of availability and the amount of time it takes to reconstitute. In the sense that I don't have to apply as much mental thought to the process, emotionally it's not as draining. It has made my life a little bit more simple."



To find out how other people and their families deal with hemophilia, read other Personal Stories.


   
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