Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Hi I have a question... Why don't all CF centers use Ambry Genetics to do all their CF testing...it takes only a few weeks apposed to 6 weeks with basic testing and it can screen for many more mutations? Also why in states where they do Newborn screening, don't they use the Ambry Test? I mean so many Cf patients have one common muatation and one unknown..why not automatically do the extensive test? Is it the fact that CF centers would be inundated with new CF patients and not know what to do? I am not trying to be sarcastic but you know what I mean. Also which states require Newborn screening and how / why did they start it? Becki YOUR FAVORITE LilGooberGirl YOUNGLUNG EMAIL SUPPORT LIST www.topica.com/lists/younglung Pediatric Interstitial Lung Disease Society http://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Pennsylvania started screening newborns approx. 2 years ago, I'm not sure why they started but it's a good thing Mom of 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Pennsylvania started screening newborns approx. 2 years ago, I'm not sure why they started but it's a good thing Mom of 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Pennsylvania started screening newborns approx. 2 years ago, I'm not sure why they started but it's a good thing Mom of 14 w/cf, Cody 11 wocf, Zoey 3 wocf, Evan 11 wks w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 I personally would not go to a CF center that even ordered a sweat test unless the blood test showed unknown mutations. And I was told it was the CFF that is behind the power curve on this issue. Lori in Florida Re: Cf Genetics Questions Hi Becky, I think the Ambry test is way too expensive and specialized for a neonatal test. This has to be a quick and cheap test or it won't be done at all. But I am totally with you that the Ambry test (or any other DNA test that covers all known mutations) has to become the gold standard at all CF centers. Don't know whether the insurance companies or the CFF are the huge road block in this case. But it's ridiculous that the docs rather fiddle around with multiple sweat tests and run a genetic test afterwards ( " just to make sure " ) instead of ordering a full DNA test at once. Peace Torsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 I personally would not go to a CF center that even ordered a sweat test unless the blood test showed unknown mutations. And I was told it was the CFF that is behind the power curve on this issue. Lori in Florida Re: Cf Genetics Questions Hi Becky, I think the Ambry test is way too expensive and specialized for a neonatal test. This has to be a quick and cheap test or it won't be done at all. But I am totally with you that the Ambry test (or any other DNA test that covers all known mutations) has to become the gold standard at all CF centers. Don't know whether the insurance companies or the CFF are the huge road block in this case. But it's ridiculous that the docs rather fiddle around with multiple sweat tests and run a genetic test afterwards ( " just to make sure " ) instead of ordering a full DNA test at once. Peace Torsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 I personally would not go to a CF center that even ordered a sweat test unless the blood test showed unknown mutations. And I was told it was the CFF that is behind the power curve on this issue. Lori in Florida Re: Cf Genetics Questions Hi Becky, I think the Ambry test is way too expensive and specialized for a neonatal test. This has to be a quick and cheap test or it won't be done at all. But I am totally with you that the Ambry test (or any other DNA test that covers all known mutations) has to become the gold standard at all CF centers. Don't know whether the insurance companies or the CFF are the huge road block in this case. But it's ridiculous that the docs rather fiddle around with multiple sweat tests and run a genetic test afterwards ( " just to make sure " ) instead of ordering a full DNA test at once. Peace Torsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 The test to screen newborns for CF only became available around 1997 or 1998 and then after that it took a few years for the hospitals, etc to learn about it. It is not a state law in Pennsylvania to my knowledge. I asked when they preformed the test on Emma back in 2000 and they indicated it was a hospital by hospital decision. I have not heard anything since then that would indicate it is a state law in Pennsylvania. The test actually test for a specific chemical present primarily in the blood of newborns with CF. After this test comes back positive, they then do a genetic test. In our case, this was without our knowledge and at that time Ambry wasn't available. I don't know what they use now but I am sure again it's a hospital by hospital thing. I am sure in some cases, they simply just refer the parents to a CF center for further testing. This is now a federal law which prehibits any insurance company for dropping insurance coverage due to a preexisting condition. However, this only holds true if you previously had insurance and are switching to a new one. if you don't have any insurance at all and are trying to obtain it, the preexisting condition clause will then apply. If you have insurance and simply find out that you have a major illness such as CF, they can not drop you. This was a law that was enacted by Clinton. - mom to Emma 2 years w/cf and Isabelle 4 years old wo/cf On Tue, 3 Dec 2002 10:11:09 -0500 " Beverley Donelson " bevd@...> writes: > > I think it should be but the law ought to have in it that the > insurance companies that are licensed in that state CANNOT DROP THEM > or > REFUSE them insurance. -that is what happened to my daughter in N.C. > 18 > years ago. She was DX at birth due to her mecominum > iliues.................. > > LOVE & HUGS, GRDMBEV ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 The test to screen newborns for CF only became available around 1997 or 1998 and then after that it took a few years for the hospitals, etc to learn about it. It is not a state law in Pennsylvania to my knowledge. I asked when they preformed the test on Emma back in 2000 and they indicated it was a hospital by hospital decision. I have not heard anything since then that would indicate it is a state law in Pennsylvania. The test actually test for a specific chemical present primarily in the blood of newborns with CF. After this test comes back positive, they then do a genetic test. In our case, this was without our knowledge and at that time Ambry wasn't available. I don't know what they use now but I am sure again it's a hospital by hospital thing. I am sure in some cases, they simply just refer the parents to a CF center for further testing. This is now a federal law which prehibits any insurance company for dropping insurance coverage due to a preexisting condition. However, this only holds true if you previously had insurance and are switching to a new one. if you don't have any insurance at all and are trying to obtain it, the preexisting condition clause will then apply. If you have insurance and simply find out that you have a major illness such as CF, they can not drop you. This was a law that was enacted by Clinton. - mom to Emma 2 years w/cf and Isabelle 4 years old wo/cf On Tue, 3 Dec 2002 10:11:09 -0500 " Beverley Donelson " bevd@...> writes: > > I think it should be but the law ought to have in it that the > insurance companies that are licensed in that state CANNOT DROP THEM > or > REFUSE them insurance. -that is what happened to my daughter in N.C. > 18 > years ago. She was DX at birth due to her mecominum > iliues.................. > > LOVE & HUGS, GRDMBEV ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Gosh, I hadn't heard that .Thanks for the up front info , LOVE & HUGS, GRDMBEV Re: Re: Cf Genetics Questions I personally would not go to a CF center that even ordered a sweat test unless the blood test showed unknown mutations. And I was told it was the CFF that is behind the power curve on this issue. Lori in Florida Re: Cf Genetics Questions Hi Becky, I think the Ambry test is way too expensive and specialized for a neonatal test. This has to be a quick and cheap test or it won't be done at all. But I am totally with you that the Ambry test (or any other DNA test that covers all known mutations) has to become the gold standard at all CF centers. Don't know whether the insurance companies or the CFF are the huge road block in this case. But it's ridiculous that the docs rather fiddle around with multiple sweat tests and run a genetic test afterwards ( " just to make sure " ) instead of ordering a full DNA test at once. Peace Torsten Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 , Glad Clinton was good for SOMEthing! Aunt B Quote Link to comment Share on other sites More sharing options...
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