Federal Legislative and Policy Priorities


Congressional Lupus Caucus

The Congressional Lupus Caucus provides a forum in which members of Congress and their staff can actively engage in a dialogue to improve the quality of life for people with lupus and their caregivers through supporting the advancement of lupus research and increasing awareness of lupus among the public and health professionals.

National Institutes of Health

The National Institutes of Health (NIH) is the largest source of funding for medical research in the world comprised of 27 Institutes and Centers.  The NIH currently funds most of the lupus research conducted.  Nonprofit groups, including the Lupus Foundation of America, and other sources provide the remaining dollars.  Thanks to these sources, we have recently made progress and now have important clues to the origins and workings of this mysterious disease.  We will continue to advocate for increased research funding at the NIH, especially for lupus.

Food and Drug Administration

The Food and Drug Administration (FDA) is a federal agency within the U.S. Department of Health and Human Services.  A core function of the FDA is to evaluate new and existing medications for their effectiveness and safety.  The Foundation works with the FDA to ensure they understand the complex nature of lupus as emerging therapies treating lupus move through the drug development process. 

Access to Treatments

One of the key goals of the Lupus Foundation of America (Foundation) is to ensure people with lupus have access to the care and treatments they need. Recently, access to a few vital treatments has been challenging to obtain, specifically access to quinacrine, hydroxychloroquine, and Benlysta®.

 

Save the Date for the 2017 National Lupus Advocacy Summit

A policy summit on lupus will be held June 25-27, 2017 at the Hyatt Regency Hotel on Capitol Hill in Washington, DC. Approximately 200 activists from across the country will bring their message to Congress seeking support for more lupus research funding for the National Institutes of Health and to elevate lupus on the nation’s health care agenda.