Do you have to go through a Doctor to be tested for CF?

[harvey]

Do you have to go through a medical doctor to be tested to see if
you're a CF carrier or have the recessive gene?  Or are there
alternatives?  Did your medical pay for the tests?  Any
suggestions on a good test lab or is this a choice your doctor
makes?<br>
<br>
 Thanks.<br>
<br>
Harvey

 

[JazzysMom]

Its a test & like any other test, you need doctors orders for it. It is highly recommended that you go thru an accredited CF clinic/lab to assure accuracy. I would contact whoever your grandchild will be going to for CF care. Insurance should cover it, but it does vary as to how easy it is to get it covered. The social worker at the CF clinic that your grandson will go to or is going to should be a big help for you. Let us know what happens!

 

[julie]

Actually for a genetic (blood) test, it doesn't really matter where you go. Generally CF clinics are more familiar with all of the different labs that do the genetic testing (there are ones that test for 97 mutations and ones that test for up to 1300 mutations) but sometimes people have a hard time getting into a CF clinic if there isn't a real inclinication for them to go (hard time as in insurance coverage, not as in the clinic letting them come in).

If you were going to have a sweat test, then YES, it is SO important that you go to an accredited CF center. You can find one at www.cff.org (it takes a while to load the page) or where you grandson is going/will go as Melissa said.

Most of the time, a family doctor can order the test for you. There are a few different labs that they can send the blood to, and some might require a preauthorization through your insurance depending on your ins. company. The first is Genzyme, they test for 97 mutations. In my opinion, that's a good place to start BUT I am in favor of the extended panel tests.

The two companies who do those are Ambry genetics (www.ambrygen.com) and Quest Diagnostics (<a target=_blank class=ftalternatingbarlinklarge href="http://www.questdiagnostics.com/hcp/topics/cf/cf.html)">http://www.questdiagnostics.com/hcp/topics/cf/cf.html)</a> Quest has been around for decades and many doctors and insurance companies are familiar with them. You might have better luck getting authorization for a test through them than through Ambry, but both test for 1300 of the known CF mutations and both have great customer service (I've dealt with both of them, as have others on this site)

My insurance paid for my testing (I had carrier testing done) two years ago, we did a genzyme test first which required no preauthorization, but then I wasn't satisified with that (being that my husband HAS CF and our children will end up as carriers from him, I wanted to make sure I wasn't passing a CF mutation to them to and giving them CF) so we had an extended panel test through Ambry genetics. They paid for that as well.