I have looked and there is not a choice of Forum topics that fits for activism. Ergo, I am posting this topic here. Please let me know if this is the wrong spot Myeloma Beacon. Otherwise this thread will serve as that purpose.
This thread is for us to organize to calvanize and know who the decision makers are for us to move forward drug therapy for our needs. The primary purpose is to identify those who are the decision makers that impact OUR ACCESS to drug therapy that we need.
The first person I have located is
Caleb Briggs, Pharm.D., Designated Federal Officer
Division of Advisory Committee and Consultant Management
Office of Executive Programs
E-mail: ODAC@fda.hhs.gov
I have e mailed him. Let's bombard him first!
Interestinlgy, the other info provided does not provide an email...but we can all call this 800 number:
FDA Advisory Committee Information Line
1-800-741-8138
(301) 443-0572 (local number)
WE want NAMES!! Call the number and ask.
Always remember there are multiple therapeutic groups...you want ONCOLOGY advisor committe member names. Do not listen if they are not specific to that therapeutic group. They cannot help us unless they are on the ONCOLOGY advisor panel.
What I would like to see happen is that we use our collective power. If you find anyone who can be of help the to further our cause who is a DECISIONmaker for the FDA advisory panel. Please feel free to participate.
We need all help. No effort is insignificant. We are talking about our lives SURVIVAL!!
Let's get movin...everyone has the ability to find these folks.
I will also be searching. But I need your partiipation to help us get there.
As your folks always told you 2 heads are better than one...and multiple heads are also important. Your diverse backgrounds gives you access to venues others may not have. UTILIZE them..network.
No effort is insignificant, no matter how small you may belive your voice is always know this is our LIVES. Push forward. Ask your nurses, ask your cliniicians, ask your friends on boards of any pharmaceutical corporate. Utilize any chip you have. KNowledge is power. Those with access to the media or press, ask your friends even if this is not their expertise, they have access to multiple resources. ASK!!
No effort, no matter how meaningless you may feel it is is uneeded.
Let's get moving and not moan!!
This is AMERICA, it is a democracy, we pay taxes!! The FDA is funded by them. We paid our taxes not let's demand our money's worth.
Please contribute no matter how significant you feel that effort may be..you could be the individual that finds the key.
I too will be working EARNESTLY and have some tricks up my sleeve
But what I know most is a single voice does not have the impact of A COLLECTIVE force.
And I know, you could identify a person, we had not consider. Please help.
I am suggesting a name for our cause...Let's move not moan. If you have a better one I am all ears!!
We can do it TOGETHER!! Our country is a democracy, the force of collective voices brings result.
If you believe in DEMOCRACY we can get it done!
Let's do it!!
Our lives are at stake.
