LFA Brings More Than 350 Advocates to Washington to Urge Congress to Provide More Funds for Lupus Research and Education Programs

 

More than 350 lupus advocates from 31 states traveled to Washington, DC recently to participate in the Ninth Annual Lupus Foundation of America Advocacy Day.  Advocates urged Congress to provide more funds for lupus research to find the causes and cure for lupus, and for education and public awareness programs to improve early diagnosis and treatment of the disease.  The advocates visited 146 offices of senators and representatives to urge lawmakers to do more to help the 1.5 million Americans suffering with lupus.

Congressman Kendrick Meek and LFA National Spokesperson Tomiko Fraser Hines discuss lupus legislation during LFA's Annual Advocacy Day 2007 on March 1 in Washington, DC.

Advocates urged their representatives to support the Lupus Research, Education, Awareness, Communications, and Healthcare (REACH) Amendments Act of 2007 (H.R. 1192). 

 

The legislation, introduced by Congressman Kendrick Meek (D-FL) and Congresswoman Ileana Ros-Lehtinen (R-FL), expands federal efforts to combat lupus, addresses gaps in research, and heightens awareness of lupus symptoms and health effects among the public and health professionals. 

 

When enacted, the legislation will promote collaboration within the National Institutes of Health to enhance research to identify the causes of lupus; develop more effective treatments; improve lupus data collection; expand public awareness and professional education programs aimed at reaching individuals who are at greatest risk for lupus; and educate doctors and other health professionals to improve diagnosis and treatment. 

 

During a luncheon in the Dirksen Senate Office Building on Capitol Hill, Senator Edward Kennedy (D-MA), who chairs the Senate Health, Education, Labor and Pensions Committee, spoke to the advocates about their important role to serve as the voice of all people with lupus.  Congressman Kendrick Meek and lupus researcher Dr. Richard Burt of Northwestern University in Chicago, Illinois also addressed the advocates.  Congressman Meek provided an overview of the Lupus REACH Amendments Act and Dr. Burt presented an update on his success using hematopoietic stem cells to treat lupus and other autoimmune diseases. 

 

Advocates first attended a training program which explained why advocacy was important. Three lupus investigators presented scientific findings from their research which was funded with federal dollars.  The speakers were: Gary Gilkeson, M.D., Chair, LFA Medical-Scientific Advisory Council and Vice Chair, Department of Medicine at the Medical University of South Carolina; S. Sam Lim, M.D., M.P.H., Principle Investigator for the National Lupus Patient Registry at Emory University; Michelle Petri, M.D., M.P.H., Professor of Medicine, Johns Hopkins Medical Center and Co-Director, Hopkins Lupus Pregnancy Center. 

 

In addition, advocates heard from two federal officials who spoke about their government funded lupus projects.  Frances Ashe-Goins, R.N., M.P.H., Deputy Director and Director Division of Policy and Program Development, U.S. Department of Health and Human Services Office on Women’s Health, spoke about lupus education and awareness programs, and Dr. Vivian Pinn, Director, Office of Research on Women's Health, National Institutes of Health, who spoke on the state of lupus research at the NIH.  Other speakers included Congressman Jim Moran (D-VA) and Bill Vaughn, Senior Policy Analyst at Consumers Union.

 

While medical advances in recent years have improved the survival and quality of life for many people with by lupus, it has been more than 40 years since the U.S. Food and Drug Administration approved a new treatment for lupus.  Advocates urged Congress to provide more research funds to break down scientific barriers that have impeded progress on the development of new, safe and effective therapies.

 

Although public awareness of lupus is increasing, lupus advocates know they still have a monumental task ahead of them to secure the level of national attention and support they believe lupus deserves.  After watching many of their family members, friends, neighbors and coworkers suffer with the debilitating and disabling effects of lupus for many years, these advocates know they are on a very important mission and are strongly determined to succeed.

 

Four leading national non profits partnered with the LFA to sponsor the 2007 Advocacy Day.  They are: Black Women’s Health Imperative, ASPIRA Association, National Medical Association, National Hispanic Medical Association, and Association of American Indian Physicians.
 

Photographs from the Lupus Foundation of America 2007 Advocacy Day
Senator Edward Kennedy	Senator Barack Obama and Senator Richard Durbin	Congressman Kendrick Meek
Congressman Henry Brown and Dr. Gary Gilkeson	Congressman James Moran	Senator Daniel Akaka and Hawaii Advocates
Dr. Richard Burt	Richard Cooper	Dr. Vivian Pinn
Senator Richard Durbin (Left) and Senator Barack Obama (Right) meet with the Illinois advocates		LFA Board Chair Marjorie Susman welcomed Senator Edward Kennedy
Advocacy Day training included information on lupus legislative priorities and updates on research sponsored by the National Institutes of Health.	There were 111 advocates from Pennsylvania, including two classes of junior and senior high school students from the Philadelphia area.
More than 350 lupus advocates participated representing 31 states.  They visited 146 Congressional offices during Advocacy Day 2007.

 

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