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Advocacy Update: GINA Will Not Be
Included in 2008 Budget Bill

 

As many of you know, the PKD Foundation issued an urgent Action Alert

regarding GINA on Friday, Dec. 14, asking advocates to call the leadership of

the U.S. House and urge them to include GINA as part of the 2008 budget bill

that will be voted on by Congress this week.

 

Your response was tremendous, so much so that some Congressional offices

had to disconnect their phones because of the overwhelming number of phone

calls they received.

 

The good news is that you have helped us substantially raise the awareness

level of GINA with the House leadership, which includes Speaker Nancy Pelosi

(D-CA), Majority Leader Steny Hoyer (D-MD) and Minority Leader John

Boehner (R-OH). We must report, however, that the House leadership decided

over the weekend not to include GINA in the budget bill.

 

Why was GINA not included in the bill?

    - President Bush indicated that he would veto any budget bill that wasn’t

“clean,” meaning he would veto any budget bill that was sent to him with

amendments unrelated to the actual budget.

    - Senate Minority Leader Mitch McConnell (R-KY), bowing to pressure from

the “big business” lobby, indicated he would block the Senate from considering

any budget bill that contained GINA.

    - Supporters of GINA ultimately decided, based on the first two points

above, that the legislation should be debated and voted on later as a “stand

alone” bill.

 

We must keeping pushing for GINA

While we are disappointed that GINA will not become law before the end of the

year, we are not discouraged.  Your phone calls showed that GINA has wide

support across the country. More than 14 million people in America have a

genetic disease or condition that leaves them at risk for genetic discrimination.

 

It is important that PKD patients and their families and friends keep contacting

Members of Congress to push for passage of GINA when 2008 begins. This bill

faces significant opposition from the big business lobby, which includes the U.S.

Chamber of Commerce and the National Association of Manufacturers, among

others. Those special interest groups do not want GINA to pass because they

don’t want employers to be held accountable for genetic discrimination. They

do not want employers to incur the costs associated with defending themselves

against genetic discrimination lawsuits.

 

Big business stands in the way of GINA

Unfortunately, the message of the big business lobby resonates loudly with

many Members of Congress. The big business lobby has millions of dollars at

its disposal to influence our elected officials to oppose this bill. The PKD

Foundation does not have the money to influence Members of Congress in that

way.

 

We do, however, have you. All that money doesn’t make the big business

lobby’s stand on this issue right.  Discrimination is wrong, whether it’s based on

race, religion, age, gender or genetics.  Congress will eventually do what’s

right and pass GINA, but our advocates must keep up the pressure. That’s why

your help is critically important to our efforts.

 

Stay tuned in 2008 as we make our next move to get GINA through the U.S.

Senate and signed into law. To sign up for Action Alerts, click here.

 

Calling All Advocates From Nevada and Kentucky

The PKD Foundation is looking for advocates from Nevada and Kentucky who

would be willing to participate in the PKD Champions United on the Hill event

on March 3-4, 2008, in Washington, D.C. Senate Majority Leader Harry Reid

(D-NV) and Senate Minority Leader Mitch McConnell (R-KY) have the power to

move GINA to the floor of the Senate for debate and a vote.

 

The PKD Foundation wants to send a delegation to each office in March to call

for the Senate to pass GINA, but we need at least one or two constituents from

each state to get access for a meeting. Unfortunately, we don’t have anyone

from either state who has signed up to participate.

 

If you are willing to help us end genetic discrimination for millions of Americans

with PKD and other disease, please contact Dan Lara, government relations

manager, at (816) 268-8480 or larad@pkdcure.org as soon as

possible.

 

Click here to register for the Champions on the Hill event!

 

Learn more about goverment advocacy

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