Discovery: Pioneering discovery to prevent, treat and cure lupus
September 2009

 

The Patients' Voice for Lupus Research

Dear Lupus Advocate,

As you read this with your morning coffee, dozens of advocates from the LRI National Coalition are spreading out across Capitol Hill to tell their representatives that more 1.5 million Americans have lupus—and it’s not only scary and unpredictable, but often devastatingly costly to treat.

We invite you to step right in to the Congressional offices with these advocates and add your “virtual” voice RIGHT NOW!

On Health Reform

  • Make coverage available to all, regardless of pre-existing conditions.

  • Eliminate lifetime caps on health benefits.

  • Include development of a regulatory pathway for the FDA to approve follow-on biologic drugs, keeping in mind patient safety and the physician-patient relationship.

  • Integrate educational provisions on prevention, wellness, and management of chronic diseases.

  • Build in ways to lessen the racial disparities in access to care of chronic diseases, such as lupus, which disproportionately affects minorities.

As we spread out across Capitol Hill, we also shot a letter to the editor of the New York Times on a powerful and moving editorial, “Body Count at Home” by columnist Nicholas D. Kristof. Make your views known and comment yourself!


On NIH Research Funding

  • 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.

  • Keep the House’s funding level for the NIH, which amounts to a 3 percent increase above last year, and is $400 million higher than the Senate’s proposal.  This increase is needed to return to robust, sustainable and predictable budget growth for NIH.

  • Biomedical research conducted at the NIH, including basic investigations, translational studies and clinical trials, will help lead to new desperately needed treatments options and a better of understanding of lupus.


On Funding for the National Lupus Education Program

  • ASK your representative to please send a letter of support to:

    Labor-HHS Appropriations Chairman David Obey and Ranking Member Todd Tiahrt in the House

    Labor-HHS Appropriations Chairman Tom Harkin and Ranking Member Thad Cochran in the Senate

to include $1 million in the final Conference Report for Fiscal Year 2010 Labor-HHS Appropriations Bill for the Office of Minority Health to continue lupus education efforts for health providers.

Many lupus patients often visit multiple doctors and go years before receiving a correct diagnosis. There is a profound need for improved professional awareness and education on lupus—a substantive effort to engage our nation’s health professionals in finding ways to improve lupus diagnosis and treatment.


Millions of Americans with lupus, and their families and friends, thank you for your effort!


 

 

 

From your desk chair…add your voice!

 

Email your elected officials in the House 


Email your elected officials in the Senate 

 

Update your status on Facebook

 

Tell your followers on Twitter

 

Post a video to YouTube

 

Write a bulletin on MySpace

 

Keep updating
your profiles throughout
the day. 

 


Encourage your friends and followers to add their voices to our effort!

 

 

 

About the LRI - Pioneering Discovery to Prevent, Treat, and Cure Lupus
The Lupus Research Institute (LRI)—the world’s leading private supporter of innovative research in lupus—champions innovation, encourages scientific creativity and risks exploring uncharted territory to bring new scientific solutions to the complex and dangerous autoimmune disease of lupus.  Founded by families and shaped by scientists, the Institute mandates sound science and rigorous peer review to uncover and support only the highest ranked novel research.  Its bold and proven research strategy places the LRI at the forefront of lupus science as the Institute consistently achieves the breakthrough discoveries, novel insights and solid results that are changing the course of lupus research and bringing new hope to people with lupus nationwide.  To learn more about lupus and the Lupus Research Institute, visit www.LupusResearchInstitute.org.

Support the LRI: http://www.lupusresearchinstitute.org/help

Connect with the LRI:  Facebook  Twitter  MySpace  YouTube

 

Lupus Research Institute
330 Seventh Avenue, Suite 1701, New York, NY 10001
T: 212.812.9881 F: 212.545.1843
e-mail: Lupus@LupusNY.org