Sunday, September 13, 2009

LA Lupus Lady in DC!

After arriving in DC on the "red eye" from LA and heading to my hotel to relax for a bit. My friend Catherine met me and we walked around the city took some snaps as I settled into to what will be a busy week in Washington. As you can see, I went straight to the President's House...

I am here as a part of the Lupus Research Institute's Capitol Hill Advocacy Day. The National Coalition is the patient voice for Lupus Research. I have basically copied verbatim from the Lupus Research Institute's handout for participants in the 2009 Capitol Hill Advocacy Day and - click it and learn what you can do for Lupus!

A few of my Lupus friends have asked what can they do? Well, even if you aren't here with the National Coalition in DC you can let your voice be heard. Call your Congressperson and Senators let them know that you are a Lupus patient and a constituent of theirs and you and the LRI (Lupus Research Institute) urge Congress to sustain the nation's medical research enterprise and support the House funding level of $31.2 billion for NIH in the Fiscal Year 2010 Labor-HHS Conference Appropriations Bill.

-- Congress approves the budget for the NIH which funds various biomedical research including clinical trials and the research that can and will lead to a cure for Lupus. the request for $31.2 billion amounts to a 3 percent increase above last year and is $400 million than the Senate proposal.


The LRI National Coalition requests that Members (of Congress) support a provision in both the House and Senate FY2010 Labor-HHS Appropriations Bills to provide $1 million to the HHS Office of Minority Health to continue a new nationwide lupus education program for health professionals.

-- Lupus is up to three times more common among African Americans, Hispanics and Native Americans and affects over one-and-a-half million persons, 90 percent of whom are women.
Most Lupus patients often visit multiple doctors and go years before receiving a correct diagnosis.

Both House and Senate versions of the Fiscal Year 2010 Labor, Health and Human Services Appropriations Bill have recognized the urgent need for improved lupus education. Each bill provides for $1 million to the Office of Minority Health in the Department of Health and Human Services to build a national lupus health education program for health education providers.

The official wording of the requests for Members of Congress is how the Lupus Research Institute forms their official request, so if (when!) you call it will help to use the same wording. If you have any questions, feel free to ask me. I am still learning how this part of the lawmaking process happens. It isn't as easy as singing "I'm just a bill. A bill on Capitol Hill."

More as my DC adventure continues...

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