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: www.huliq.com/16289/pgd-eliminates-threat-of-hemophilia-in-newborn-babies
3 thoughts on “When the Experts are Ignorant”
Dear Ms. Kelley-
In response to your concern, please note the data was obtained from the National Heart, Lung and Blood Institute (NHLBI). As their website notes, “the NHLBI plans, conducts and supports research related to the causes, prevention, diagnosis, and treatment of heart, blood vessel, lung, and blood diseases; and sleep disorders. The Institute also administers national health education campaigns on women and heart disease, healthy weight for children, and other topics.” (www.nhlbi.nih.gov) . The article was intended to offer an alternative to help in diagnosing the disease before it becomes a factor. PGD has similar applications with other genetic diseases such as Cystic Fibrosis and Huntington’s Disease. In addition to genetic counseling, PGD offers an option to parents concerned with reducing the liklihood of passing along a hereditary disease. Additional information can be found on PGD at http://www.asrm.org or http://www.asrm.org/Patients/FactSheets/genetic_screening.pdf
Take part in an online discussion on haemophilia
Hi
We at The Patient Connection are currently running a research blog or online discussion on the subject of haemophilia
In particular we are interested in haemophilia as a genetic/family condition and any thoughts you might have about gene therapy
Apart from that we would love it if you could share your story or just post useful resources for fellow sufferers.
If you would like to join us please go to
http://www.thepatientconnections.com/blog.asp?uid=28
Thanks and remember your opinion counts
Best wishes
Belinda
PS The link will give you an option to join our formal research community and participate in research into the opinions of the haemophilia community later on in the year.
Way to go Laurie! We need people like you to pay attention, speak up, and speak out. Being born with hemophilia means having a blood disorder not a life-altering disease. Kids grow up and do the same things whether they have hemophilia or not. Same for teens and adults.
All of my life I have heard false statements about hemophilia by the uninformed. This gets very tiring but then I realize that their ignorance may not be their fault.
We have 2 kids in high school that still aren’t being taught about hemophilia correctly.
I think Dr. Werlin went beyond ignorance and used unethical measures to market his new technology. This couldn’t have been a simple mistake of only checking one source and using their oldest data.
I would have to purposely try to only come up with this type of data if I researched hemophilia statistics.
Dr. Merlin’s reply is weak at best. He should be more forth-coming about his scheme or ignorance. Be honest with us, we aren’t stupid.
Tom