A call to Action.... Meeting with Congressman

[Guest guest]

Hello my CLL friends.

This is Leo. Those who are regular readers know that I am passionate about

the drug development system and how we can make it more efficient. While I

too watch intently on drugs like Cal 101 I consistently am perplexed with

the system itself that I believe is rather improvement prohibitive. Using

's words, " We are all in this together. "

Through constant and diligent efforts, I have gained the attention of a

Congressman who is for now willing to at least listen to our situation. I need

your help!! Please read the following and return an e-mail to me that I

can submit to this Congressman.

There is a model that has proven successful. It is the model that was

observed during the AIDS crisis. By getting out of the way, science came to a

rather quick and less expensive (comparative speaking) solution to the

AIDS Crisis. The principle of " Where there is no Health to protect, FDA and

Heavy Regulation have no place getting in the way " was followed with

incredible success. Getting drugs into the correct aids victims early brought

much

quicker results while lowering development costs. We all know what

happened.

HIV (which in some ways mimics our own disease in the general sense that

it revolves around the Immune system) is now mostly controlled.

Double blind studies are expensive and appropriate for aspirin and Tylenol

type drugs where there is health to protect.. Not for lethal disease like

Cancer. Considering the success of how AIDS has been managed, it is an

absolute " NO BRAINER " IMO that the lessons learned there are being mostly

ignored by those in the, dare I say, " Ivory Towers " or those in the decision

making positions. When you study the AIDS crisis, there were some very loud

voices demanding change. Thus, the message should be simply about that. Not

whether or not those at the FDA or where ever, are good people or not.

I/We have no interest in making anyone look bad. That includes those in

our FDA, The leukemia Society, or anyone involved in the way the system is

now. There is probably no such thing as a " perfect system " but I feel it

rather obvious that it can be improved dramatically. Thus, my only intent is

to bring positive change. Our system is overly expensive, cost

prohibitive, and in need of over haul. I see a huge Political window opening

due to

the intense concentration on the budget and entitlements. I believe this

Congressman see the same thing.

I cannot guarantee that this meeting with a Congressman will lead to

anything huge. All I know is that this could be the beginning of getting the

ball rolling. The bottom line is Politics matters and numbers matter to

Politicians.

Please write me an e-mail that you feel best expresses your honest

concerns with how the FDA is managing new disease development and your own

desire

to see things improved. Keep it professional. Something that will at least

help minimally in getting the Congressman's help in maybe initiating the

formation of a dream team so to speak to bring change.

That will be my goal and objective if possible.

If any of you have experience in these matters, I would love to hear from

you. I believe that I'll get through it without peeing my pants, but then

again, no promises.

if possible, I will be talking to Burrows of the Abigail Alliance.

My intent is to be as solidly prepared as possible.

I am simply a Dentist in Northern California, 51 with my hands full with

young twins, teenagers (Most of you know how that is!), and business that

is extremely challenging in today's environment. My time is limited, thus, I

could use some help if there is anyone that this message appeals to.

For now, Send me an e-mail that I can show a Congressman that for now best

to leave un named for obvious political reasons. I will be traveling this

weekend and meeting Monday around noon.

I believe the more e-mails I can show, the higher the odds of involvement

at higher levels.

I have no idea if this will lead to anything productive. All I know is that

I am at least trying and doing the best I know how. I'll let you know how

it goes next week.

Regardless of what happens, I will be dedicated to this cause for the rest

of my life. Hope you will be as well.

Thanks,

Leo

[Guest guest]

I think Leo is really on to something here when making the connection between

HIV AIDS and CLL, and then asking for the same model for bringing protocols

rapidly to the patients.

I'll be sending Leo an email to include in his materials for visiting his

congressman.

Lynn, your sister in CLL

> From Leo ........

> There is a model that has proven successful. It is the model that was

> observed during the AIDS crisis. By getting out of the way, science came to a

> rather quick and less expensive (comparative speaking) solution to the

> AIDS Crisis. The principle of " Where there is no Health to protect, FDA and

> Heavy Regulation have no place getting in the way " was followed with

> incredible success. Getting drugs into the correct aids victims early

brought much

> quicker results while lowering development costs.