Lupus: Risks, Rates, and Mobilization of the Invisible Disease
By Dr. Jennifer Sedillo
Faculty Member, Public Health at American Public University
Systemic lupus erythematosus (SLE), also known as lupus, is an autoimmune disease that primarily affects women ages 15–40. Addressing lupus is among many current public health challenges. Efforts are focused on identifying risk factors, educating healthcare providers, increasing survival rates, and developing effective partnerships.
Background on the Disease
Symptoms of lupus can be non-life threatening such as a skin rash to severe including pericarditis and nephritis. In 98 percent of lupus patients, their body makes an antibody to the nucleus of the cells. These antibodies can affect any type of cell in the body and therefore cause a wide array of symptoms. This also makes management and treatment of the disease difficult and multi-faceted depending on the tissues and organs that are affected.
Prevalence and incidence of the disease is not readily available as there is currently no national or international surveillance system for reporting this disease.
It is estimated that up to 1.5 million people may be living with lupus.
It is also hard to estimate the number of deaths due to SLE because it can be listed as an underlying or contributing cause and may not always be diagnosed.
Identification of Risk Factors
Public health seeks to identify risk factors for disease in order to prevent, diagnose, and properly treat disease in the community. Unfortunately, with lupus, true causation has yet to be identified and we are left with a small number of identified risk factors including sex (90% of cases are female), ethnicity (blacks and other minorities), and age (most cases are between ages 15–40).
However, genes, hormones, and environmental factors are all thought to play a role in the onset of lupus. Environmental factors are currently being researched and include cigarette smoke, silica, mercury as well as possible infectious agents including Epstein-Barr virus (“mono”), herpes zoster, and cytomegalovirus. Exposure to these factors alone is not enough to cause lupus.
Education of Healthcare Providers
Diagnosis of lupus remains an obstacle in lupus treatment and survival. Public health often focuses on education of the general public for disease. However, with lupus, educating the healthcare providers remains a paramount task in order to diagnose and treat lupus in patients early on.
Many times lupus goes undiagnosed due to non-specific symptoms of the disease (as any organ can be affected and patients may not have the same symptoms) or over diagnosed due to a positive screen although no symptoms are present. Currently, diagnosis is made through using criteria set forth by the American College of Rheumatology although even if used properly, cases can go undiagnosed in the early stages.
Education of healthcare providers to help diagnose those in the early stages can increase the survival rate and allow the patient to live with fewer symptoms through proper management of the disease.
Increasing Survival Rate
Those with SLE are living longer today than they did four decades ago. The increase in survival is credited to better diagnosis, management and treatment of the disease. The 5-year survival rate in 2002 was 95 percent for those diagnosed with SLE.
While this rate is high, it does not depict the complications of SLE that lead to a reduced survival rate such as nephritis and atherosclerosis and to the disparity among ethnicities as both African Americans and Hispanics are likely to have reduced survival compared to Caucasians.
The key to filling in the gaps on lupus lies within public health partnerships. These partnerships can lead to significant research advances in the field, such as the Centers for Disease Control and Prevention’s partnership with Emory University to study the epidemiology of lupus among Caucasians and African Americans in Georgia. Similar registries are set up in Michigan, California, Phoenix, and New York.
By having these registries, epidemiologists can determine populations who are at risk as well as actual prevalence and incidence of the disease in the population. These are key pieces of information in securing funding for further initiatives.
Other partnerships exist to help educate healthcare workers early in their career such as The Lupus Initiative. The Lupus Research Institute is an advocacy group that is seeking further funding of this initiative through the Department of Health and Human Services.
Lupus is an especially complex disease as it affects mostly women of childbearing age which leads to unusual issues in compliance with the advanced treatment needed to manage the disease.
In addition, lupus still remains to be properly diagnosed in patients leading to an unknown in the extent of the disease within the population. Lupus highlights the need for public health in the community to identify risk factors, educate, and provide research and resources for both prevention and treatment of the chronic disease.
About the Author
Jennifer Sedillo is an associate professor in the Public Health program at American Public University. She recently received her doctorate from the University of South Florida where she was involved in infectious disease research. She has been involved in biomedical and environmental microbiology research for the past 12 years.