The Senate Appropriations Committee’s 2016 spending bill passed June 25 includes some good news for people with lupus. Sandra C. Raymond, President & CEO of the Lupus Foundation of America notes in a statement that the bill provides support for funding of valuable lupus research and education programs, and observes that the Committee has reconfirmed it’s ongoing support of these programs that lupus advocates from every state have advocated for many years. The bill includes funding that had been requested by the http://www.lupus.org/ Foundation.
Lupus-related elements of the spending bill include:
– $5.75 million for the National Lupus Patient Registry program at the Centers for Disease Control and Prevention (CDC), the first comprehensive research study to assess the prevalence and incidence of lupus in the United States;
– $1 million, requested by the Foundation, for the Lupus Initiative at the Office of Minority Health which develops vitally important tools for physicians to help them better recognize the signs and symptoms of lupus;
– $1 million to initiate a clinical trial action plan,
– $32 billion for the National Institutes of Health (NIH), an increase of $2 billion.
Ms. Raymond observes that “earlier this month, hundreds of Lupus Foundation of America advocates were on Capitol Hill for our National Lupus Advocacy Summit and an additional thousand wrote letters to call on Congress to support at least $32 billion in research funding for the National Institutes of Health and support the 21st Century Cures Act to help get new treatments to lupus patients faster. Lupus activists met with their members of Congress to share their stories and bring to life the daily, devastating impact of this disease and demonstrate the urgent need to elevate lupus to a place of prominence and secure additional funding for lupus research needed to develop an arsenal of treatments for people with lupus.”
The next step for the legislation will be sending it to the full Senate and House of Representatives for consideration, and the bills will be reconciled in conference committee. Ms. Raymond says the Lupus Foundation of America will continue working with Congress to raise awareness of lupus on the nation’s health care agenda, and to convey the need for robust funding of lupus research.
Lupus (Systemic Lupus Erythematosus or SLE) is a severe and disabling systemic and chronic autoimmune disorder of unknown etiology in which various cell types and immunological pathways become dysregulated, allowing the immune system to go awry and dysfunctionally produce antibodies to cells within the body that attack and destroy healthy tissue — causing pain, swelling and inflammation, and damages to joints, skin, blood, heart, brain, kidneys, lungs, bones, and nervous system.
Lupus primarily affects women of childbearing age (ie: between 20 to 40), and women of color are two to three times more likely to develop Lupus than Caucasians. However, men, children, and teenagers and people of all races and ethnic groups can develop Lupus. Typically affecting many parts of the body, including the joints, kidneys, central nervous system, heart, hematological system and others, and can cause severe complications that make aggressive therapies obligatory. Other risk factors include exposure to sunlight, some prescription medications, infection with Epstein-Barr virus, and exposure to certain chemicals.
The Lupus Foundation of America estimates that based on its research at least 1.5 million Americans have lupus, but that the actual number may be as high as 2 million or more, since there have been no large-scale studies to determine the actual number of people in the U.S. living with lupus. More than 16,000 new cases of lupus are reported annually across the country, representing a huge unmet medical need, with only one new treatment having been approved by the FDA in the past 50 years.
Lupus symptoms vary from one person to another, and the Foundation advises that in many cases, the best treatment approach will be provided by a health care team that can tailor treatment to the individual’s specific condition using a wide variety of medicines ranging in strength from mild to extremely strong. Prescribed medications will usually change during a person’s lifetime with lupus. However, they caution that it can take months –sometimes years — before a health care team finds just the right combination of medicines to keep a patient’s lupus symptoms under control.
Rheumatologists, doctors who specialize in diseases of the joints and muscles, generally treat people with lupus, although if the disease has caused damage to a particular organ, other specialists will be consulted. For instance, a dermatologist for cutaneous lupus (skin disease), a cardiologist for heart disease, a nephrologist for kidney disease, a neurologist for brain and nervous system disease, or a gastroenterologist for gastrointestinal tract disease, and so on. A woman with lupus who is considering a pregnancy needs an obstetrician who specializes in high-risk pregnancies.
A wide variety of drugs are under consideration for treating Lupus. More information can be found at:
The Lupus Foundation of America
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