New Survey Spotlights Ongoing Concerns for People Living with Hemophilia B

This is a paid public announcement from CSL Behring and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to the CSL Behring website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.

Carefully controlled schedules. Undercurrents of uncertainty. Persistent pain. People who are living with hemophilia B, and those who love them, face a lifetime of managing the complexities of this condition.

While significant advancements have been made in the treatment of hemophilia B, there is still a desire for new treatment options to address unmet needs for people with moderate to severe forms of the condition.

In fact, a recent CSL Behring-sponsored survey on the burdens of living with hemophilia B found that even with treatment, people with hemophilia B are still experiencing spontaneous bleeds and joint pain, and would consider switching to a new therapy that may be more effective. The online survey conducted by CSL Behring in partnership with the Coalition for Hemophilia B included 110 people with the rare bleeding disorder who are on either short-term or long-term prophylactic treatment.* The survey revealed that during a six-month period, respondents reported an average of 4.2 spontaneous bleeds and 2.2 joints bleeding three or more times.

Additionally, 87% of respondents reported experiencing joint pain at least a few times a month. 

“The survey really highlighted the concerns and challenges that people with hemophilia B still face,” said Kim Phelan, Chief Operating Officer of The Coalition for Hemophilia B. “Spontaneous bleeds, joint damage and joint pain are just a few of the burdens that some in the hemophilia B community must live with.

With up to 156 intravenous infusions per year, people with hemophilia B are also at risk for vein collapse.

The life-long effects of living with and managing hemophilia B however aren’t just physical. More than 40% of people living with hemophilia B experience depression, anxiety, or other psychological disorders.

As new treatments become available to potentially address the unmet needs within the hemophilia B community, discussion with healthcare professionals on treatment goals is essential. It’s time to ask, “Is there a better treatment option for me?”

*Short-term prophylaxis is prolonged treatment following a bleed until full recovery and prophylaxis prior to physical activity. Long-term prophylaxis is regular preventative injections. Of the 110 people surveyed, 29 were being treated with short-term prophylaxis only, 74 were being treated with long-term prophylaxis only, and 7 were being treated with both short-term and long-term prophylaxis.

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Make Time, Make Money, Make a Difference

There’s been a lot of activity lately in the hemophilia community around market research. In fact, I’ve never seen it so busy! We often are hired to help invite bleeding disorder patients and caregivers (those who care for children 17 and under) to participate. So what are they, what do they do and how do they work?

Pharmaceutical companies sometimes have new reconstitution devices that they need to test run before they bring them to market. This makes sense as they can’t invest all the research and money only to find out that consumers don’t like them. Sometimes these are actual clinical studies and sometimes they are market research. These usually require patients and caregivers to be present, so they are held in facilities across the country. I know some that will take place in California  and one in Massachusetts soon.

Sometimes, pharma just want to know what you think: about products, efficiency, treatment. This can be done in person (sometimes they hire market researchers to come to your house!) or on the phone, or increasingly via a website.

They are almost always paid, so you can make good money in a short period of time for participating. The in-person interviews tend to pay the most. Sometimes $150 for a one to two hour interview. But even the on-line or web based ones pay: $50 to even $100 for a 30 minute survey.

The most important thing to know is to protect your privacy. You don’t want to give away identifying information to just anyone. We go to great lengths to protect each of our participant’s privacy. So you get the benefits of making a difference while making some money without worry!

If you want to participate, let us know! We are always looking to include more patients and caregivers in our studies. Just email at and we will keep our eyes open for you as a participant!

Great Book I Just Read
The Adventures of Tom Sawyer by Mark Twain

This is a classic, of course, and for great reasons. Witty, wonderful story, and no one sees into the heart and soul of what boys are made of like Twain. Young Tom Sawyer grows up in St. Petersburg, Missouri, where his biggest concerns are how to trade up marbles, avoid school and win the heart of Becky Thatcher. Until he witnesses a murder, in which an innocent man is blamed. Then begins a long journey to maturity that includes buried gold, being trapped in a cave and a final battle with “Injun Joe,” the true murderer. Five/five stars.

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