Lupus: An Urgent National Health Issue
Lupus: An Urgent Health Issue
The Lupus Foundation of America (LFA) estimates that approximately 1.5 million Americans and more than five million people worldwide are living with a form of lupus. Although lupus primarily affects women in their early working and childbearing years, men, children, and teenagers can develop the disease as well. Lupus can interfere with a woman’s ability to work, have or raise a family, or in some cases, even care for herself.
Though people of all races and ethnic groups can develop lupus, women of color are two-to-three times more likely to develop lupus. Of particular concern are the disease’s effects on African-American women, who are more likely to be affected at an earlier age, experience greater disease severity, have the highest overall death rate among people with lupus, and are three times more likely to die from the disease than Caucasian women
At present, there is no cure for lupus. Some of the current therapies for lupus are toxic and can cause other health problems from long-term use. The U. S. Food and Drug Administration (FDA) has not approved a new medication specifically for lupus in more than 51 years.
LFA Leadership Role in Lupus Research
The LFA is the foremost national nonprofit health organization leading the effort to find the causes of and a cure for lupus. Finding the cure will take hundreds of millions of dollars. LFA works to increase funding for lupus medical research from all sources, including stimulating public and private investment in lupus research, as well as supporting its own national research program.
Through its nationwide network of lupus advocates and its public policy office in Washington, DC, the LFA advocates for increased funding for research through the National Institutes of Health and other appropriate federal agencies, including the Centers for Disease Control and Prevention, and the Department of Defense. LFA Chapters also advocate on the state and local levels to secure support for research and education programs.
The LFA also works with the pharmaceutical industry to stimulate additional private and investment in clinical research, clinical trials, and development of new therapies for lupus. To educate people with lupus who may be interested in learning about participating in a lupus clinical trial, the LFA has created the Center For Clinical Trials Education (CCTE) which includes a search feature to find nearby trials in need of volunteer participants.