A rant on the California AFP test

While we were on vacation for a week we got a huge stack of mail, most of it junk. Amongst it all was a letter to me from the state informing me of the test results that I already discussed here. In California, the Alfa-Fetoprotein (AFP) test is covered by the state. I was informed of this in the letter and told that further testing and genetic counseling would also be covered by the state because of my positive test results.

Like I’m sure anyone in my position, my husband and I have been doing TONS of research on the test, the possible meaning of the results, and Downs Syndrome since finding out. Oddly enough, the more research I do, the better I feel.

For example, in an initial inquiry my husband found that the official false positive rate for the test is five percent. This percentage just didn’t sit right with me, however, when it seemed that almost EVERYONE I knew either knew someone or themselves had gotten a false positive from this test. Every positive test my midwife has seen has turned out negative. There was just no way that a mere five percent could be accurate for the false positive rate. So, I started looking into it and I found that the actual number should be much, much higher. Basically, they throw out any “false positive” if the person has diabetes, hyperemesis gravidarum (like me!), miscalculations of cycle dates (like me!) and a whole host of other conditions and circumstances. If those cases were included and not thrown out, some estimates suggest that the false positive rate for the AFP test could be as high as 80 percent!

The more research I do, the more I am convinced that this test is completely bogus! Yet our state continues to pay for it (and most OBs make you feel pretty guilty if you refuse the test) and, as I found in my letter, further testing and genetic counseling upon a positive test result. Why put people through this test and all the worry associated with the results when those results are horribly inaccurate? It seems uncessary. Furthermore, why should the state pick up the bill for the test and more? This just seems ridiculous to me when we are in such a budget crisis that we are having to lay off law enforcement, teachers and other important state employees, my sister and friends amongst them. And why should my tax dollars go to paying for some “genetic counselor” to tell me or other people that a life with Downs Syndrome is horrible and no life at all and it would just be better for everyone involved if I had an abortion?

So yeah, that letter just made me plain pissed off. End of rant.

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7 Comments

Filed under Family, Politics, Pregnancy and Birth, Ramblings

7 responses to “A rant on the California AFP test

  1. agreed! i think the test is bogus too, which is why i only consented to it once and refused for the other 3 pregnancies.

    my sis-in-law took the test and it came out positive with her daughter, and it ended up being a false positive too!

    i just prefer to stick with the 20 week ultrasound!

  2. Yeah! I had no clue what that test was since they don’t do it as often in the UK- but was a little surprised how surprised THEY were when I refused it. It just doesn’t make sense.

  3. I had a high AFP test, and as a result got scheduled ultrasounds for every 6 weeks to make sure everything was going okay. The genetic counseling is no big deal, basically the doctor asks you a bunch of questions about any family connection to genetic disorders…I was told after multiple ultrasounds that everything was fine though. But 2 weeks after my son was born they diagnosed him with congenital hydrocephalus and I found out that a high AFP test could have been one of the signs he had it. Not saying that anything is wrong in your situation, but I am glad that I was somewhat informed of all the different conditions there were that could result from a high AFP test. God wonderfully took care of the life growing inside of me, just like I’m sure he is taking care of the one growing inside of you.

  4. lwuertz

    Megan, I just found out that part of the reason that OBs get so upset when you refuse is that they get a fairly large kickback when you take the test. Another thing that makes me mad! Is that coming out of our tax dollars too?

  5. GrandmaTiger

    Yes, sadly, the government has become just one big tax trough at which all the little piggies feed. Way back in my grandmother’s day, doctors actually made housecalls, and worked to keep their patients well and happy because the patient was the one paying the Dr’s salary. Now we have health insurance and tax dollars, and nobody is really sure where the money comes from, so they don’t really work for US anymore. When I was a kid, there were jokes about the dr and golf, only working 3 days a week, etc. but even then the dr mostly was accountable to his patients. My mom was 34 when she had me, there were more worries about the RH thing than whether I’d have Down’s. My cycles were always way off, but I don’t even remember if they gave me that test with any of you, I know no mention was made of the possibilty, nor was there any mention about using the ultrasounds to check for it.

  6. Oh, I’m sorry you’ve had to endure that ridiculously stressful test, Lisa! It makes me mad, too. I refused everything, of course, but I paid for it in insults from the doctor.

  7. I am so sorry you’re having to go through all of this! I refused these tests too because I didn’t want the stress of them. Thankfully my doctor didn’t make too big a deal about it. It is crazy that the AFP has so many false positives! I’m glad I didn’t do the tests.

    We had to see a genetic counselor with my first child since our 20 week ultrasound revealed a choroid plexus cyst. Basically, it is a cyst that just about always dissolves on its own and is nothing to worry about, but of course, since the technician found it, we had to be informed about it. Then if we wanted a level 2 ultrasound with a specialist, we HAD to go through the genetic counseling before we could do that. I wanted the second ultrasound just so I could see my baby again, so we did it. It was really not a big deal, although our counselor said we had a 50% chance of having a deaf child. LOL! I honestly do not believe that for a second. But anyway, she could even tell that we were not worried about anything and that we would accept, love and keep our baby no matter what. We went to our follow up ultrasound and the specialist couldn’t even find the cyst anymore and seemed rather frustrated about that! All that for nothing. My son is perfectly healthy. I pray your baby is too!

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