FAN Conference on Sat. September 23rd

Posted on: Fri, 09/22/2000 - 6:29am
Anonymous's picture
Anonymous (not verified)

Is anyone attending the FAN conference on Saturday, September 23rd in Newport Beach, California? I can't make it, but really want to know what they say in regards to

(1) the new vaccine and testing of the new drug by Tanox and

(2) What is the latest on outgrowing PA...how could you get it tested, find out, etc.

I know that these topics were discussed at the FAN conference in NY earlier this year...but alot might have changed...
If someone is going from this website...could you PLEASE report in..Thank you so much

------------------

Posted on: Sun, 09/24/2000 - 3:15am
rilira's picture
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Joined: 11/11/1999 - 09:00

I went to the conference and they did discuss the Tanox study. Basically what they said was it was still a long way off. Dr. Scherier(sp?) said the media has given the impression that the vaccine is just around the corner but it isn't. Basically this vaccine would be like a monthly shot and it would take the life threatening quality out of the allergy. He stated that a food allergic person WOULD NOT be able to go out and eat these foods daily. Basically it sounded like to me that it will miminize the reaction. he also said it will be very expensive and hard to determine who will get it and who will not. He did say there are several studies going on still in the animal testing stages that could be good possibilities. Basically they said " the future looks bright". Personally the information kind of bummed me out because I was under the impression the Tanox thing would be a "cure-all". Oh well it still is better than nothing.
As for out growing the PA, he just said to look at it as life long. Some kids do outgrow the allergy but there is no hard fast rule about why some do and why some don't.

Posted on: Sun, 09/24/2000 - 2:11pm
Anonymous's picture
Anonymous (not verified)

Curious..when you say that "it is expensive and they are not sure who will get it and who will not"....If we pay for it and want to pay for it, why wouldn't our child be able to get it. I was a bit confused by this statement..but then again..maybe you were too.. If you had anymore information on what they meant by this when they spoke about it...please let me know. At this point, I am NOT concerned about cost and if it takes the "life-threatening" part out of it...that is GREAT! My allergist had said 2 to 3 years away..

Posted on: Mon, 09/25/2000 - 1:18am
mom2two's picture
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Joined: 06/09/2000 - 09:00

Since Dr. Sicherer is one of the leading doctors in the Tanox study, I think I would trust his word that its a way down the road yet. The way the vaccine would work, if I am understanding this correctly, is that it would keep the body's autoimmune system from producing those things (forget the name) that
basically are fighting the various food proteins and allergens, causing the symptoms. You would still be allergic to whatever it was you were allergic to (this vaccine would be effective for more than peanut and food allergies I think) but the severity of the reactions would be less. The cost in producing the vaccine may be very high, especially in the beginning and especially since there really is not an extremely large population with life threatening allergies.
I don't know what the vaccine is made of or how it is made or what the side effects might be. Its quite possible that the risks in taking the vaccine may outweigh the benefits in many situations, that would be a reason to limit its use in many cases. I understood it being at least 5-7 years away as far as being available to the general public. Thats why if you can, its a great idea to try and be involved in the study so that you can possible get the vaccinations sooner. (although you might be in a control group)
Unfortunately, young children are not being tested, at least not yet, I think the age can't be below 12? Not really sure. Hey,
even if its 7 years away, that would be when my daughter would be entereing her teen years, the toughest time for them I think as you cannot keep as close an eye on them and they are really not mature enough to take care of themselves re: this allergy.

Posted on: Mon, 09/25/2000 - 1:41am
Anonymous's picture
Anonymous (not verified)

Not that I am doubting any of you, but I find this so weird, as my ped. allergist out of Children's had lead us to believe that something will come within the next 2 to 3 years. He is very conservative so I don't think he was holding a carrot over my head..but anyhow..I do agree about the risks outweighing the benefits. I was actually hoping that my daughter might be one of the 10-20% to outgrow this allergy...but it looks like she may have asthma..so I don't think that is a good sign. I have yet to meet or hear about an actual person outgrowing this. Perhaps the problem is that "how do you test if someone has outgrown it??" We will be re-testing (CAP RAST and perhaps skin prick test) around 3 years of age..Anyhow, today my hopes for anything seem down...

Posted on: Tue, 09/26/2000 - 2:33pm
rilira's picture
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Joined: 11/11/1999 - 09:00

Kathryn-
I don't think your doctor was wrong in saying 2-3 years. I believe that was the original estimate. However since the human trials actually began the response has been a lot lower than expected. What I mean is not so many people have volunteered for the study and of those who have several have had to be excluded due to their medical history. As has been discussed somewhere on this board it can also be cost prohibitive to be in the study since you are required to provide your own transportation ( for many that means airfare several times a year). They have recently increased the number of test sites so maybe the response will increase.
I believe what they meant by the statement "some would get it and some wouldn't" is it is going to be difficult to determine the protocol for when the vaccine is needed. Will everyone who has a positive RAST be eligible? but then the RAST has a 50% false positive test result, so then do only the people who have actually experienced anaphylaxis get it? or do they go by the skin prick test to determine eligibility. I think he was just alluding to the fact that there is a lot more work and investigating with this drug to be done.
Dr. Sicherer said to tell if someone has outgrown an allergy- you should do a skin prick and a RAST and if those look good then you should do a controlled food challenge. Controlled meaning in the doctor's office or the hospital. If a person tolerates the food, then it is a good indication of having outgrown the allergy. He also stated many people are against food challenges and that it has to be an individual family decision if you want to try it.

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