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®.
Lupus Patient-Focused Drug Development (PFDD) Meeting
The Lupus Patient-Focused Drug Development (PFDD) Meeting is a meeting driven by persons with lupus and their advocates to provide the Food and Drug Administration (FDA) with perspective from our community on a number of important issues. Scheduled for September 25, 2017 the Lupus PFDD Meeting will feature upwards of 200 persons with lupus as well as their representatives, including two diverse panels of people affected by lupus who will share their stories and drive the conversation. Following the meeting, the organizers will summarize the session as well as the input received through a pre-meeting survey and share this report with the FDA, pharmaceutical developers, researchers and others working to produce treatments for lupus.
2017 National Policy Summit
The National Policy Summit: Advocacy in Action 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.