LFA Response to CDC Report on "Trends In Deaths From Systemic Lupus Erythematosus, U.S., 1979-1998"
May 2, 2002FOR IMMEDIATE RELEASE
Contact: Duane Peters, Lupus Foundation of America, 301-670-9292, ext. 17
The Centers for Disease Control and Prevention released a report on May 2, 2002 that shows a 60% increase in deaths over a twenty-year period resulting from systemic lupus erythematosus (SLE), a disease affecting at least 1.4 million Americans that causes the immune system to attack the body's own cells and organs. The report's most disturbing findings were that the death rate among black women ages 45-64 years increased 69.7% and that more than one-third of all deaths resulting from SLE occurred among persons less than 45 years of age. Approximately 80% of new cases of SLE develop among women in their childbearing years, and lupus is up to three times more common among African-American women than among Caucasian women. Sandra Raymond, President & CEO of the Lupus Foundation of America (LFA), issued the following statement in response to the CDC report:
"The report demonstrates the urgent need for improved public awareness of lupus, and greater access to medical care by individuals afflicted with the disease. It confirms the LFA's long-standing position that lupus is an urgent national health issue and deserves a coordinated and comprehensive response by the federal government.
"The LFA is alarmed at the significant increase (69.7%) in deaths resulting from lupus among black females ages 45-64 years. The LFA also is concerned with the report's findings that more than one-third of all deaths resulting from lupus occurred among persons aged 15-44 years, and that death rates increased with age. The LFA concurs with the report's suggestion that the increase may be the result of late diagnosis and problems in access to care. Providing funds for lupus education and medical services directed toward communities with significant African-America populations would help to reduce the death rate among black women."
For the past two years, the Lupus Foundation of America has urged Congress to appropriate funds to provide medical services to poor and uninsured people with lupus as authorized by the Lupus Research & Care Amendments of 2000. Congress passed the legislation in November 2000 but has yet to earmark funds to implement subtitle B that authorized grants to support the delivery of medical and social services for lupus patients and their families. The LFA has recommended to congress that it appropriate a minimum of $30-million in Fiscal Year 2003, with additional funds appropriated in subsequent years. This initial funding would allow the Department of Health and Human Services to award grants for needed medical services in communities most impacted by lupus.
An LFA membership survey revealed that more than half of the respondents experienced lupus symptoms for four or more years and visited three or more doctors before they obtained a correct diagnosis. These results demonstrate the strong need for increased education about lupus diagnosis and treatment among family physicians, whom often are the first medical professionals to see persons presenting symptoms of the disease. Patients with lupus who obtain an early diagnosis and who receive appropriate medical care have a better chance of living a normal lifespan.