Advocacy in Georgia
The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable and devastating diseases. Lupus strikes without warning and can have effects that last a lifetime. There is no known cause or cure of lupus, but there is hope.
How Can You Make a Difference in Georgia? Sign up to be a Lupus Activist
What does a Lupus Activist do?
A lupus activist engages in educating their federal, state, and locally elected officials about the cruel mystery of lupus. Whether through a letter, email, phone call, or face-to-face meetings with elected officials, lupus activists are the vital voice on legislation and policies issues impacting people with lupus and their families. An activist’s voice makes a difference.
Who can be a Lupus Activist?
Anyone who cares about lupus! You don't have to be an expert in government affairs to share your knowledge and story about lupus.
21st Century Cures Act - We're off to a Great Start!
On December 13, 2017, President Barack Obama signed the 21st Century Cures Act into law. There are many key provisions in this new law that we care about – including National Institutes of Health research funding; patient-focused drug development and patient engagement support; and clinical trial design and review modernization and we must continue to play a role in helping to shape implementation through our advocacy efforts.
Perhaps more importantly, we must continue to fight to elevate lupus on the nation’s healthcare agenda and funding for lupus research.
We will be hosting the National Policy Summit: Advocacy in Action on June 26-27, 2017 at the Hyatt Regency Hotel on Capitol Hill in Washington, DC. We encourage you to join us to raise awareness among policymakers and encourage support and elevate lupus on the nation’s health care agenda.
This summit gives us the opportunity to play a vital role in shaping policy to meet the needs of the lupus community. At the 2015 National Lupus Advocacy Summit, nearly 200 lupus activists from across the country visited Capitol Hill, and thousands more joined us to support 21st Century Cures legislation.
Only one drug has ever been developed specifically to treat lupus and approved by the US Food and Drug Administration. For the estimated 1.5 million Americans and 5 million people worldwide living with a form of lupus, one drug will never be enough to treat this cruel and mysterious disease. We must have an arsenal of safe and effective treatments and cures for lupus.
THANK YOU for your exhaustive advocacy efforts to provide hope to the millions of people who struggle with lupus and dream of a life free of lupus.
GEORGIA COUNCIL ON LUPUS EDUCATION AND AWARENESS (GCLEA)
In August 2016, GCLEA Council members, S. Sam Lim, M.D., MPH, Kim Schofield, Chris Reed, and Senator Renee Unterman (pictured from left to right) appointed by Governor Nathan Deal, hosted a day-long workshop titled “Lupus as a Public Health Concern.” Key stakeholders from across Georgia created an action plan to increase awareness of lupus and improve access to care and services.
The GCLEA workshop is part of a larger American College of Rheumatology (ACR) agenda. The ACR is working in partnership with the National Association of Chronic Disease Directors (NACDD) and receives funding from the Centers for Disease Control and Prevention.
The GCLEA was established by Senate Bill 352 in 2014, as a result of seven years of the Georgia Chapter’s advocacy efforts.
Senate Bill 352 Establishing the Georgia Council on Lupus Education and Awareness
in February 2014, the Senate voted and passed SB 352 creating the first Georgia Council on Lupus Education and Awareness within the Department of Community Health. The Council will consist of six members appointed by the Governor, the Health Commissioner, Speaker of the House and the Lieutenant Governor. These members must include a physician who treats lupus and a patient.
Two of the initial members appointed by the Governor will serve for one year, all other appointments will be for two years. The council will select a chairperson from among its members.
The duties of the Council will include:
- Initially investigating the level of education concerning lupus in Georgia, to be posted on its website
- Developing information on lupus endorsed by government agencies, to be posted on its website
- Developing a directory of lupus related health care services, to be posted on the Department’s website
The Department may distribute such information, subject to appropriations or access to other public or private funds. The Council is required to prepare an annual report on its activities and, as it deems appropriate, recommendations for legislative action. The Council may solicit and accept donations, gifts, grants, property, or matching funds from any public or private source for the use of the Council in performing its functions.
We are so grateful for the wonderful leadership of Senator Renee Unterman and our passionate advocacy chair, Kim Schofield and the patients and families who joined us at our Lupus Awareness Day. Many met their legislators and heard our resolution in the Senate. With every step in our advocacy journey, we have seen small victories and we are moving the needle of lupus awareness within the Georgia State legislature toward future appropriations for research and lupus education.
Lupus is enormously prevalent in our state, as confirmed in the recent report from Dr. Sam Lim and Emory University which is positioned to become the lupus research capitol in the nation and beyond. Read More about the Georgia Lupus Registry, Georgians Organized Against Lupus (GOAL), and the Lowance Center for Human Immunology at Emory University.