-resources to help us all

[norcalmom]

"The ability of a pharmaceutic company to fund research is limited to developing a new drug that may treat an illness " (quote by Allergan exec to Beth Maloney at recent symposium)

But - What about the ability to research the imapct of an existing drug on a new audience? I'm assuming that they would be interesting in expanding their sales - so if antibioics or IVIG works for pandas kids - why wouldn't they be researching it?

I've been thinking about it for a while. I attended a IDC forum at Stanford for patients with primary immune deficiency or with common variable immune deficiency a couple of weeks ago. I think that there are several resources we've not considered in getting pandas awareness going. We tend to focus on the parents and the primary physicians / specialist - but there are other influencers that may be more effective like:

 

Manufacturers of IVIG, since a hand full of clients means big $ for them, may want to help put some pressure on the insurance providers....anyone have any expertise in this area of work, or connections with the companies that make the drugs...I know they have resources for paitients and working with insurance for that were talked about at that IDF meeting.

 

And What about existing Autoimmune and Rare Disease Resources?

 

The IDF - Immune Def. Foundation

 

the American Autoimmune Related Disease Association http://www.aarda.org/mission_statement.php

 

National Coalition of Autoimmune Patient Groups

http://www.aarda.org/issue_display.php?ID=12

 

Link to phone # for advocay resources

http://autoimmunefoundation.org

 

National Organization for Rare Disorders (and yes - pandas is a rare disease if no more than 200 NEW cases per year occur..as far as I know ...that is the case - as much as we "see" it everywhere, until docs DX less than 200 cases last year - then for the time being we may be able to get help from this group and this status helps in getting insurance approval for drugs, and it also helps the pharma companies that have "rare" drug staus drugs get extentions on patents, and other financial incentives from FDA and gov to work on rare stuff (because there's not alot of return on this investment)

http://www.rarediseases.org/patients-and-families

 

IVIG is on the ORPHAN Drug list already (for one or two disorders only). If we can get a designation and get on that list that the FDA approves (not the insurance providers) than the insurance providers cannot reject out claims . At least thats how I think it works...more reserach necessary..not that getting FDA to recognize us would be easy, but they do have resources for rare diseases. Getting on the Orphan drug list is a big deal but maybe being added as a disorder treatable by a drug already on the Orphan Drug list would be easier.

 

 

that's just from 3 minutes of brainstorming. Lets make a list and identify who most likely to have influence and affintiy for pandas. Then we can start contacting them on a more formal basis. If some people want to join in helping me - it would make the process go much faster! We may only find a couple that are a fit, but its worth a few emails and calls.

 

AND - Anyone in the DC area that may be interested in any of this or have some connections?? - there is an upcoming meeting on OCT 12 in DC - I don't think its for us, but the folks there may know more about who can help us. More info on that event here:

http://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/default.htm

[mdmom]

I've already contacted some of the orgs you listed. Not much help to me so far.

 

But I have an idea on who might be able to help with the meeting in D.C. on 10/12.

 

I am darn fed up with fighting a losing battle with our insurance co for IVIG and I need to turn my negative energy into something positive.

 

I'm in the Baltimore/DC metro area.

 

PM me and we can chat.

[kos_mom]

mdmom,

 

Am also in the DC area and have pm'ed you. Anyone else in the DC area we could brainstorm with? Getting IVIG for our kids at the end of the day will require people who know how to work the system, and these people are heavily concentrated in the DC area. Perhaps collectively we could use our contacts from among our neighbors, friends, and business associates in the area to figure the most effective way to organize an effort.

 

ko's mom

[minimaxwell]

I have put out some feelers along these lines as well. Norcalmom , I am the one who sat with you at lunch during the conference. There is a Mom on the Private Pandas FB page that wants to help. How can I put you in touch with her? Is Beth willing to take this on?- tiffani

[Hayley]

I don't think I know anyone directly who can help, but I'm in the DC area and am happy to help brainstorm and will keep thinking if I know of anyone who might be a good resource for this. Please PM me if you all convene to discuss....

[mom24]

This is kind of random, but I agree with people who have mentioned that having a "celebrity" involved might help. Has anyone read Jenny McCarthys' book? I wonder if she knows anything about PANDAS. I am also very frustrated with the insurance companies. I am not in the DC area----NYC suburbs.

[T_Mom]

I am in the DC area, would be more than willing to attend this mtg/discuss etc...we are ready to march downtown and see our Senators,

still fighting for a past IVIG, with a federal insurance!

pm me.

[kos_mom]

T. Mom,

I also have federal health insurance and have pm'ed you.

Ko's Mom

[lulu4]

Also have federal health insurance. Am 2 hours from DC. (I am a relative newbie; don't know how to p.m. you! Will when I figure it out.)