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How Do We Get Drug Company for Augmentin XR to Do OCD Campaign?


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Over the last two months and two appts with Dr. L in Bethesda she emphatically said that the "Vatican" has spoken at NIMH and Strep is officially linked to OCD, with emphasis on PANDAS. The disorder PANDAS is due to be renamed in accordance with two Johns Hopkins doctors (former opponents.) These massively influential doctors under the crushing weight of evidence have changed their positions 180 degrees allowing the dam to break for the paradigm shift to infectious agent originated mental disorders.

 

Augmentin XR is one of the primary treatments for PANDAS right now and after watching commercials every single evening for allergy drugs, birth control drugs, chloresterol drugs and the (ahem) Cialis class drugs, it is clear that drug companies are marketing the heck out of drugs.

 

Augmentin XR is well tested, profitable, and is very popular. It would seem logical that Glaxo might want to put some cash into marketing this trusty old drug for the new OCD fix. Does it make sense to contact them in some capacity through their board or other vector to shake the bushes on this? I'd personally like to see their drug reps pushing Augmentin XR in pediatrician offices this spring for strep related OCD as a long-term solution. That'd get a lot of parents on this group covered for their kids through their pediatricians without having to get a PANDAS doctor.

Edited by Hierge
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I have always believed that until the drug companies get on board not ALL the docs are going to know/treat this--sadly, that is the nature of our medical establishment. (Of course, there are always excellent doctors who are exceptions to this).

 

However, I am concerned about PANDAS getting boxed into a specific treatment protocol when it seems that the research really isn't there yet. Too many docs are telling parents they can't or won't treat this, and I think it can be harmful for the medical establishment to get stuck on the idea of Augmentin XR being the treatment.

 

I think it is more helpful for doctors to understand that they need to dig for infectious causes, address the infection, and treat the autoimmunity accordingly. I'm just worried for that child who needs more than augmentin (such as prednisone, IVIG, and Plasmapheresis)...I worry that if a child doesn't improve in x number of days (as marketed) then doctors will dismiss it as being PANDAS.

 

I am hopeful, that things are beginning to fall into place!

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There are always going to be concerns about what's the right treatment. This autoimmune disorder is triggered by Strep. Strep is treated with Augmentin XR. Not every person responds to Augmentin XR for strep throats. So should we stop treating strep throats with Augmentin XR because not all kids are fixed with it? I think it's ok to get this treatment out there to adress Strep without too many problems. If it doesn't work, then by all means get better treatments. Until then, let's try and help the 90 percent untreated PANDAS children on drugs like Augmentin XR to see if that helps like it did with my daughter. It's a safe drug and has been tested for decades.

 

I have always believed that until the drug companies get on board not ALL the docs are going to know/treat this--sadly, that is the nature of our medical establishment. (Of course, there are always excellent doctors who are exceptions to this).

 

However, I am concerned about PANDAS getting boxed into a specific treatment protocol when it seems that the research really isn't there yet. Too many docs are telling parents they can't or won't treat this, and I think it can be harmful for the medical establishment to get stuck on the idea of Augmentin XR being the treatment.

 

I think it is more helpful for doctors to understand that they need to dig for infectious causes, address the infection, and treat the autoimmunity accordingly. I'm just worried for that child who needs more than augmentin (such as prednisone, IVIG, and Plasmapheresis)...I worry that if a child doesn't improve in x number of days (as marketed) then doctors will dismiss it as being PANDAS.

 

I am hopeful, that things are beginning to fall into place!

Edited by Hierge
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One problem with XR in particular is:

Giving Augmentin XR Oral to a child under 12:

Warning: SAFETY & EFFICACY NOT ESTABLISHED FOR PTS LESS THAN 16 YEARS.

Of course this doesn't mean it really isn't safe for children. Augmentin XR is just extended release Amoxicillin with Clavulonic acid (at a lower dose than is in regular Augmentin). But, because the drug company hasn't spent the $$$ to to do enough studies for the FDA to say "it's safe for children" they can't really market it as something to treat children with PANDAS (or OCD).

 

This stuff is all about $$$ for the drug companies. If they don't think they are going to make enough money to make marketing (including paying for the studies needed to support their claim)worthwhile they won't do it.

 

Right now, most docs think of PANDAS as extremely rare...so it is unlikely the makers of XR will think it will be profitable to go down the PANDAS route.

 

Are any of Beth M.'s docs (in Boston) doing an XR study on PANDAS kids? I vaguely remember something to that effect?

Edited by EAMom
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This all sounds reasonable. Drug companies have to have the economics behind their marketing budgets. PANDAS is a rare disorder, but the kids are going to be long-term users right? Those are the meds they put the money behind right? Chlosterol is long term, cialis is long term, allergy meds are long term. This one fits too, but can we prod them to review the spread sheets and have their marketing dept. take a look at the potential market factors that might drive a potential campaign? Perhaps there are other "economies of scale" where other disorders could be grouped in with OCD. If it's an avenue of progression, it seems to be worth the effort to find out.

 

One problem with XR in particular is:

Giving Augmentin XR Oral to a child under 12:

Warning: SAFETY & EFFICACY NOT ESTABLISHED FOR PTS LESS THAN 16 YEARS.

Of course this doesn't mean it really isn't safe for children. Augmentin XR is just extended release Amoxicillin with Clavulonic acid (at a lower dose than is in regular Augmentin). But, because the drug company hasn't spent the $$$ to to do enough studies for the FDA to say "it's safe for children" they can't really market it as something to treat children with PANDAS (or OCD).

 

This stuff is all about $$$ for the drug companies. If they don't think they are going to make enough money to make marketing (including paying for the studies needed to support their claim)worthwhile they won't do it.

 

Right now, most docs think of PANDAS as extremely rare...so it is unlikely the makers of XR will think it will be profitable to go down the PANDAS route.

 

Are any of Beth M.'s docs (in Boston) doing an XR study on PANDAS kids? I vaguely remember something to that effect?

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Are any of Beth M.'s docs (in Boston) doing an XR study on PANDAS kids? I vaguely remember something to that effect?

 

I thought Beth M's PANDAS Foundation was sponsoring / fundraising on behalf of an augmentin XR study at Mass General, with the involvement of Dr. Dan Geller of "Saving Sammy" fame? Haven't heard a peep about this lately, though.

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If i can do a counter-point....

it is not in pharmacueticals interest....

i'm pretty sure abx are dirt cheap....no real money to be made....

 

here's a part of the dirt i just recently learned...as per doc visit for ds3....and i was whining about my walkin c0-pay of 50-100$$ and second visit that day for same condition i didn't feel had properly been address earlier that day at a scheduled sick visit....(long story ended up at er a couple of days later for ds3, another $100+)....

 

well, do to crying for money....doc said....Publix(grocery in south, more expensive than Kroger) gives abx for FREE!!!! i made sure to clarify several times....not aug or azith...but amox, pen and about 5 others....i went in and sure enough...free..

they figure you will spend $$ while you are waiting on abx....i'd rather spend a couple extra pennies on food i need, then another co-pay for another abx....(tastes bad though....pay the $2 flavor or put in tsp of chocolate syrup)...

doc also said walmart offers the same abx's for $2 an rx

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