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.

When the Experts are Ignorant

Dr. Lawrence B. Werlin may be a renowned specialist in reproductive endocrinology and infertility, but he doesn’t know squat about hemophilia. The March 23 newswires carried his announcement that his technique known as Preimplantation Genetic Diagnosis (PGD) allows couples to screen their embryos for hemophilia, “and thereby remove the risk of giving birth to a child with hemophilia.”

To market his new technology, he offers the “scary” scenario of what it is like to have hemophilia–if you were born in the 1940s. He quotes a woman who reflects that her father was only given till age 10 to live. He died in his early 50s, although the article does not say what year he died, or what he died from! (Maybe heart disease?) He also incorrectly cites statistics, which he claims “point to hemophilia as the cause of death for 32 people every week.” What? 32 patients every week? That’s 1,664 patients a year dying from hemophilia. That’s a 300% negative birth rate for people with hemophilia. I guess with statistics like these, we don’t need PGD. Nature will take its course.

Sadly, the article uses these incorrect scare tactics (or shoddy stats) to market this new procedure. I am all for choice, but let’s be clear about what hemophilia really is in the US: a completely manageable blood-clotting disorder, in which patients can lead normal lives and enjoy a normal life span. And we have 18,000 people in our community who can prove it. To misrepresent it as he has in his article is to encourage parents to engage in a medical procedure based on incomplete and incorrect information that could compromise their ethics–and eliminate the natural selection of some beautiful children, like our sons. If parents don’t want or can’t handle a child with a medical condition, so be it. But to “eliminate” that child because their doctor leads them to think he will suffer horribly or die at a young age is just plain wrong when it comes to hemophilia. That’s medical irresponsibility and ignorance–and pretty slick marketing.

To read the article:

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