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After budget cuts, Indiana baby denied life-saving treatment

Posted by on Dec. 9, 2010 at 3:39 PM
  • 103 Replies

After budget cuts, Indiana baby denied life-saving treatment

By Zachary Roth

By Zachary Roth zachary Roth - Thu Dec 9, 11:42 am ET

Mitch DanielsAn Indiana baby needs life-saving surgery, but the state health care agency -- whose budget was slashed this year -- won't pay for it.

Six-month-old Seth Petreikis suffers from complete DiGeorge syndrome, which keeps him from developing a thymus, an infection-fighting glandular organ. He needs a transplant that's been pioneered by a specialist at Duke University in North Carolina.  But the procedure costs $500,000, and the state's Family Social Services Administration won't pay for it under the state's Medicaid, reports the Northwest Indiana Times.  It claims that the treatment is "experimental" -- even though 58 of 60 children to receive it have survived.

We last wrote about Indiana's FSSA after some of its staffers told parents to drop off their developmentally disabled children at homeless shelters. The parents had failed to receive schedule Medicare waivers to pay for care, after Gov. Mitch Daniels -- who is now weighing a possible 2012 GOP presidential run -- cut the agency's funding to deal with a budget shortfall.

 

As we've reported, Arizona, suffering from its own budget crunch, has cut funding for certain medical transplants for people with diseases such as leukemia and hepatitis B.

Seth's parents have set up a fund for those who want to contribute to the cost of his treatment.

by on Dec. 9, 2010 at 3:39 PM
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Replies (1-10):
mommywho28
by Sarah on Dec. 9, 2010 at 4:53 PM

:(

Beatlemama
by Bronze Member on Dec. 9, 2010 at 4:55 PM

Poor baby!  (and mommy and daddy)

ShadowRaven
by Bronze Member on Dec. 9, 2010 at 5:15 PM

First, 43 of 60 children who have had the procedure done survived, not 58. It says so right on the Duke University specialist's profile. I'm not sure if it's a typo or an embellishment, but there's a BIG difference there.

Second, there have only been 60 children TOTAL that this procedure has been tested on and, so far, there's only a 73% success rate. The success rate doesn't outweigh the fact that this procedure is still experimental. Not to mention that, since Duke University is the only facility that offers this experimental procedure, the cost is astronomical. 

Obviously, my heart goes out to this little boy and his family. If I were in their shoes, I'd probably be bringing this to the media as well. But as an outsider, I can certainly see why the state won't approve it. It sucks beyond belief, but I can understand both sides.

MamaScorpio88
by on Dec. 9, 2010 at 5:18 PM

poor baby and family.

WinkWinkNudge
by on Dec. 9, 2010 at 5:19 PM

That sucks for that family. It's heartbreaking!

sweet-a-kins
by Emerald Member on Dec. 9, 2010 at 6:00 PM
You wouldn't take those odds on YOUR BABY?


Quoting ShadowRaven:

First, 43 of 60 children who have had the procedure done survived, not 58. It says so right on the Duke University specialist's profile. I'm not sure if it's a typo or an embellishment, but there's a BIG difference there.


Second, there have only been 60 children TOTAL that this procedure has been tested on and, so far, there's only a 73% success rate. The success rate doesn't outweigh the fact that this procedure is still experimental. Not to mention that, since Duke University is the only facility that offers this experimental procedure, the cost is astronomical. 


Obviously, my heart goes out to this little boy and his family. If I were in their shoes, I'd probably be bringing this to the media as well. But as an outsider, I can certainly see why the state won't approve it. It sucks beyond belief, but I can understand both sides.


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ShadowRaven
by Bronze Member on Dec. 9, 2010 at 6:10 PM

I never said that I wouldn't, I absolutely would. I was simply pointing out a very big error in the article. But, from the state's point-of-view, I can see why they won't approve it. I'm not saying that the state is right to deny it or that I'm agreeing with their decision in any way, just that, as an unbiased outsider, I can understand their position on the matter.

Quoting sweet-a-kins:

You wouldn't take those odds on YOUR BABY?


Quoting ShadowRaven:

First, 43 of 60 children who have had the procedure done survived, not 58. It says so right on the Duke University specialist's profile. I'm not sure if it's a typo or an embellishment, but there's a BIG difference there.


Second, there have only been 60 children TOTAL that this procedure has been tested on and, so far, there's only a 73% success rate. The success rate doesn't outweigh the fact that this procedure is still experimental. Not to mention that, since Duke University is the only facility that offers this experimental procedure, the cost is astronomical. 


Obviously, my heart goes out to this little boy and his family. If I were in their shoes, I'd probably be bringing this to the media as well. But as an outsider, I can certainly see why the state won't approve it. It sucks beyond belief, but I can understand both sides.



TruthSeeker.
by Milami on Dec. 9, 2010 at 7:19 PM

   60 children and 73% sounds like pretty good odds verses death. I support Medicaid and such services 100% for children and the disabled. As an Indiana resident, I have NO issue with my taxes going towards saving a child's life. I will even go as far as saying I would be ok with a tax "RAISE" to specifically help in these types of cases.  NO child should die because there "just isn't enough money".  That is absurd.

Quoting ShadowRaven:

First, 43 of 60 children who have had the procedure done survived, not 58. It says so right on the Duke University specialist's profile. I'm not sure if it's a typo or an embellishment, but there's a BIG difference there.

Second, there have only been 60 children TOTAL that this procedure has been tested on and, so far, there's only a 73% success rate. The success rate doesn't outweigh the fact that this procedure is still experimental. Not to mention that, since Duke University is the only facility that offers this experimental procedure, the cost is astronomical. 

Obviously, my heart goes out to this little boy and his family. If I were in their shoes, I'd probably be bringing this to the media as well. But as an outsider, I can certainly see why the state won't approve it. It sucks beyond belief, but I can understand both sides.

 

    They who can give up essential liberty to obtain a little temporary safety, deserve neither liberty nor safety~Ben Franklin

ShadowRaven
by Bronze Member on Dec. 11, 2010 at 11:09 AM

I never said that I AGREE with their decision, just that I can understand it. From a professional standpoint, 60 cases and 73% isn't enough to deem it a successful method of treatment yet.

Quoting TruthSeeker.:

   60 children and 73% sounds like pretty good odds verses death. I support Medicaid and such services 100% for children and the disabled. As an Indiana resident, I have NO issue with my taxes going towards saving a child's life. I will even go as far as saying I would be ok with a tax "RAISE" to specifically help in these types of cases.  NO child should die because there "just isn't enough money".  That is absurd.

Quoting ShadowRaven:

First, 43 of 60 children who have had the procedure done survived, not 58. It says so right on the Duke University specialist's profile. I'm not sure if it's a typo or an embellishment, but there's a BIG difference there.

Second, there have only been 60 children TOTAL that this procedure has been tested on and, so far, there's only a 73% success rate. The success rate doesn't outweigh the fact that this procedure is still experimental. Not to mention that, since Duke University is the only facility that offers this experimental procedure, the cost is astronomical. 

Obviously, my heart goes out to this little boy and his family. If I were in their shoes, I'd probably be bringing this to the media as well. But as an outsider, I can certainly see why the state won't approve it. It sucks beyond belief, but I can understand both sides.

 


PurdueMom
by Sherri on Dec. 11, 2010 at 11:15 AM

The infant is having the surgery.  Read more here.

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