"Is this something readers would like to see? Is it something the autism community would like to see? Is it something parents of kids diagnosed with some kind of mental disorder would like to see?"

YES.YES, AND YES.

Step up Philip!

Seconded.

I want to see you on the committee.

AA

After reading the fine print I have a few questions and comments.

Formal affiliation with a patient advocacy organization is part of the criteria for nomination, you know they are looking for a NAMI.Being part of Mind Freedom might be a good idea.

Also, would being a reporter be a conflict of interest?

And, would a parent of a loved one who died from Zyprexa use be excluded due to conflict of interest if involved in legal procedures as a result of the death?

Because my first thought is Ellen, being this is about intramuscular Zyprexa.

I was just told yesterday by FDA that that seat was filled back in July, as I was eyeing it myself (my formal affiliation is AHRP Board member). I am being considered for Risk Advisory Com. or something like that. Let me email FDA again and see what they say. Being hooked on to a consumer group is pretty mandatory, it appears. Ellen

Most states have a state wide consumer network now, (although not all 50 states), that should count as a "patient" advocacy group. If your state has one, it should be free and easy to join it.

Ellen, that was my concern--the affiliation of what we all know is the FDA's mandatory NAMI person. I DO hope you, or Philip can be placed in this position, but I fear it will not happen, because the FDA has set in stone a VERY GOOD FINE PRINT.

I hope ppl reading this do understand this is not a cheerleading session--this is hardball fine print that the FDA wants to set up the consumer/patient/advocate for a check off on the list.

They have their agenda in place, and the consumer/advocate/person

.,,,the consumer/advocate/person is just a check off that public input was taken. I have been in these [albeit low end] situations, and the voice on that panel must be solid, informed and without any conflict of interest; or the FDA will boot the words out the door.

I have not been on an FDA advocate panel, but I have been on others and I am positive anyone who has done this before knows of what I speak.

We represent an agenda check off. Long before we arrive with our passionate speeches. It is why I stopped speaking in public a while back.

I won't do it, unless I reach a broad audience, and I--for one--do not consider DC to be the audience that needs to hear ME.
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In my opinion, this is a useless cause. Give it up.

I continue to speak during the public hearings because I live right here and think of myself as representing other families who can't get here and speak out. My last appearance was at the Medguide Hearing. Turns out there are NO medguides for Zyprexa or the other atypicals. That was June; this is December. There still are no medguides for the atypicals. Google Evelyn Pringle's article on the subject if interested.

There is also a very downbeat section on "public hearing behavior" that has shown up on FDA's website. The FDA needs to hear from outsiders that this is a totally malicious and falacious statement that should be removed. The public should be welcomed, not chastized, at public hearings even if they are seldom listened to.

Thanks for this information Ellen, and I'm really grateful for you, speaking for others. I appear negative in my last comment, because of spending quite a bit of time in a different arena, but public input--and weeks of time and energy, only to learn agendas were fixed before the public ever spoke. I'm going to make some calls and take a look into this FDA thing, in the next week.

The psychopharmacologic consumer seat is taken. I just checked with the FDA today. But the public hearing on injectable Zyprexa, February 8 in Silver Spring, MD., does have a public hearing 1:30 to 2. I hope someone can go - I won't be here. An additional option is mailing in testimony. The phone message says the committee is concerned about "somnilence" with this Zyprexa shot (I think it is supposed to last two weeks). Like the person would never be awake, and the next thing they knew they would have diabetes. It is a crime that the drug is still on the market, and some need to speak up. www.fda.gov.

Hey Philip - if there's anything us goundlings at NCF can do, let me know.

Sorrowful -- can you give us a link to the statement on "public hearing behavior"? I've spoken at three open public hearings myself on antidepressants and submitted written testimony on ADHD drugs. But yes, the public is generally treated pretty dismissively by the committee. The real hope is that if the media comes they pick up on the testimony and run with it.

Heaven only knows where I saw it but it is there...somewhere. Unless they've changed it. I remember trying to object, but I'm not sure it got through. If I find it again, I will put it on here. What I suggest in the meanwhile is finding a link to send an email, that relats to public hearings, and object strenuously. I'll give you an email in a minute. You can ask to have it forwarded to the gentleman in charge of public hearings.

The person who appears to be in charge of setting up the hearings is Michael Ortwerth. Email michael.ortwerth@fda.hhs.gov. I sent him an email which I'm not sure went through. In it, I stated that, contrary to the statement of trying to control the public's behavior at hearings, the FDA had an obligation to treat these individuals with tenderness and kindness, given that many had flown across the country to beg the FDA to take a drug off the market or slap a black box warning on a drug that killed one of their family members. They did not come there to see members of CDER looking down and attempting to block out emotional outpourings. They should be reminding THEIR OWN staff that the stated purpose of the FDA is to PROTECT the public health, not the bottom lines of PHrma. Let me look for von Eschenbach's email...