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Re:[IP] DM testing in Florida

Hello group,

I don't usually post here, but do read when I have a chance. (Like right 
now, when I'm on semester break and the kids are all in school)

I just wanted to put in my 2 cents on this prevention thing..

I am the parent of two children with D. My second participated in the 
insulin arm of the DPT trial as a control(no treatment). At the time, it was 
the most anxiety driven thing our family ever experienced. We lived for 
almost two years knowing that our child would most likely develop D. After 
looking at the parameters to determine eligibility for the study, I realized 
that the children in the insulin arm of the study had early stages of the 
disease. They weren't really preventing anything, just trying to delay the 
more severe symptoms. This wasn't necessarily a bad thing, but whether 
intentionally or not, it was misleading to participants. On our exit 
interview last year(and from the list of data we received from the study) we 
learned that the same percentage of participants taking insulin had 
developed D as those who hadn't. So, the study, in effect, hadn't prevented 
anything. I also learned that they are doing follow-ups to determine if the 
amount or types of markers will pre-determine the severity of the disease.

My main complaint at the time was the lack of support for parents of kids in 
high risk groups. No one seemed to understand what our family was going 
through. After all, it wasn't like she was actually sick, so what was the 
big deal. I also felt that when our daughter's bg's started to elevate, the 
study center was more interested in watching her to see how the earlier 
stages of the disease developed than to help her. We landed up pulling her 
and having her seen by our endo, who did diagnose and start treatment, 
probably earlier than if we hadn't known she was at risk.

Would I screen my other children since this experience? Only if they could 
provide me some support, and  tangible options for follow up care. I DO 
think that insurances should pick up the cost of screenings for families 
with a history of the disease, if the parents want it done. There should be 
enough data from the DPT that could be compiled to prove this to insurance 
companies to justify payment.

I don't think research dollars should be going into prevention screenings, 
where specific markers have already been proven to determine a person's risk 
for developing D or any other disease. When this happens, then precious 
research dollars are being used to repeat proven tests. (Look at the amount 
of  money spent on the DCCT to prove what was already evident...)

Ok..so I gave you guys more than 2 cents worth(more like a dime :-) )


To Pat: I'm not sure if you're aware, but the oral end of the trial is a 
double blind study, which means that your child could be receiving a 
placebo. For the study to be deemed valid, no one is supposed to know what 
they are taking.

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