Infertile couples are emotionally vulnerable , and it breaks my heart when I see them being taken for a ride . Sadly, doctors do this by exploiting their ignorance.
An infertile patient recently sent me an email. Her doctor has told her that her “high levels of pregnancy destroying factor” were preventing her from getting pregnant and she was very worried. Since I had never heard of a pregnancy destroying factor before, I asked her to send me the report which her doctor had given her. This is what she sent.
I promptly did a PubMed search ( PubMed is a database of the world’s medical literature) for pregnancy destroying factor, to learn more about this “new” test. I found out to my dismay that there is no such factor, and no such test !
This clearly means that this lab has very cleverly coined an emotionally charged term, and reported these results, without bothering to inform the referring doctor that this test has not been proven or validated.
Now, if this was being done on a research basis or clinical trial setting, I think this would be acceptable. The patient would provide informed consent, and would not be charged for the test. The doctor could specify that data was being collected for clinical validation ; and could compare the levels of this putative factor in fertile patients and infertile patients, to see if there really was a difference or not. This clinical trial would take time to perform; and could then be submitted for peer review to a medical journal, for validation. Ideally, the results would then have to be duplicated by other labs, to ensure that the findings were correct , because there is always the risk of false positive findings.
However, by charging patients to do a test which has not been established, one can only imagine the amount of harm which is being done. Patients are clueless about the limitations of the test , and what it means. Sadly, most referring infertility specialists are equally clueless as well. They are happy to refer patients for this test, because it’s new, and has been marketed cleverly.
When the result comes back as positive, both doctor and patient are very pleased. The doctor is happy that she has “pinpointed” the problem, by ordering a new, sophisticated and expensive test, which is available at only one lab in the entire world ! The patient is also very impressed by how smart her doctor is.
The doctor now proceeds to “treat” this problem with all kinds of therapeutic interventions, such as steroids, IVIG and intralipids. . The medical literature is full of all kinds of treatments which reproductive immunologists have used for treatment, without their efficacy ever having been proven in clinical trials. Patients are desperate and are happy to clutch at straws.
The major irony is that some of these patients will get pregnant after taking treatment – often, inspite of the treatment ! The doctor will forget all her failures ( because these patients will get fed up and go to another doctor); while the success stories will sing the doctor’s praises to the entire world. These anecdotal success stories will create even more bias and confusion – and make a bad problem even worse !
Patients often believe that the very fact that the test is being offered means that it must be reliable ! After all, aren’t there rules and guidelines which regulate and govern what medical tests can be performed ? How can doctor offer tests which have not been proven ? The sad truth is that there is no regulation or medical oversight for medical testing – and patients need to do their own homework for themselves, which is why I am writing this post.
So what’s the lesson to be learned ? If your doctor advises you to a get a test done ( especially if it is expensive and available only at a “highly specialized” lab), please be skeptical. If tests were really useful, lots of labs would start offering them – after all, everyone wants to help their patients !
Don’t get duped by fancy medical jargon, just because this is on a computer printed report . These reports just create a façade of medical knowledge , but they are just a lot of cloud and smoke, and mean very little. Real life biology is complex , and both patients and doctors need to accept this reality.