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With saddened hearts, we share news of the passing of the Honorable Carrie P. Meek of Florida at age 95. Former Congresswoman Meek was a strong advocate for people with lupus, leading congressional efforts to secure funding for research and support services.  She introduced and worked diligently to secure passage of the Lupus Research & Care Amendments Act of 2000.  The legislation was co-sponsored by 258 members of Congress and signed into law on November 13, 2000, by President Clinton (Title V of Public Law 106-505).

The law authorized the U.S. Secretary of Health to expand research and related activities for lupus.  These activities included coordinating services among federal agencies to address health disparities, increasing awareness to improve early diagnosis and treatment, and authorizing grants to federal, state, and local agencies and nonprofit organizations to expand healthcare and enhanced services for people with lupus.

Congresswoman Meek’s legislation stimulated federal agencies to expand their efforts on lupus. In 2002, for example, the U.S. Centers for Disease Control and Prevention (CDC) issued a landmark report showing deaths attributed to lupus had increased 70% between 1979 and 1998 among black women aged 45–64 years. Consequently, the CDC initiated strategies and funded research efforts, education programs, management activities and awareness campaigns to address health disparities in lupus.

The U.S. Department of Health (DHHS) Office on Women’s Health (OWH) initiated programs focused on improving early diagnosis and treatment among people at increased risk for lupus, including the first-of-its-kind National Ad Council campaign on lupus, “Could I have lupus?” 

Other federal agencies followed OWH’s lead and stepped up their activities related to lupus, including the National Institutes of Health and the DHHS Office of Minority Health, which today continue to provide millions of dollars in federal funding for research, professional training, and public education programs and resources.

The Lupus Foundation of America, Board of Directors, and staff offer condolences to Congresswoman Meek’s family and colleagues and urge everyone with lupus to join us in expressing our sincere gratitude for her legacy of caring and support to our community. 

According to new research, a certain type of dietary fiber known as “resistant starch” may have an impact on lupus disease activity by affecting one’s gut microbiome – the naturally occurring community of bacteria and other microscopic organisms within the gastrointestinal tract. Resistant starch is a type of fiber that resists digestion in the small intestine and ferments in the large intestine, acting as a “prebiotic,” meaning it feeds the good kind of bacteria there. Some of these good gut bacteria, in turn, have been linked to immune system benefits and reduced disease activity in lupus and lupus-related antiphospholipid syndrome (APS, a condition that can cause blood clots and other health problems).

In the latest study, researchers looked at people with lupus and lupus-related APS and analyzed how much resistant starch they ate per day as well as their gut bacteria makeup. Although none of the study participants consumed a diet considered high in resistant starch (more than 15 grams per day), even moderate resistant starch consumption (2.5 to 15 grams daily) was associated with larger quantities of the good bacteria Bifidobacterium, which has known immune system benefits. Additionally, people with APS who ate moderate amounts of resistant starch had smaller amounts of bad bacteria that have been linked to the disease.

Dietary sources of resistant starch include:

• Oats and barley
• Beans, peas and lentils
• Plantains and green bananas
• Rice and potatoes that have been cooked and then cooled

While much remains unknown about the connection between diet and lupus, eating a nutritious, well-balanced and varied diet is recommended. Learn more about diet and nutrition with lupus.

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New research finds Vitamin D supplementation for five years taken with, or without, fish oil (Omega 3 fatty acid) may help reduce autoimmune disease, such as lupus.

In the study, led by Dr. Karen Costenbader, MD, MPH, Lupus Foundation of America Medical-Scientific Advisory Council Chair, 25,871 adults were divided into two groups. One group was given Vitamin D and some received a placebo. The second group was given fish oil and some received a placebo. Both groups were monitored just over five years.

Autoimmune disease was reduced by 22% in those who took the increased levels of Vitamin D with or without fish oil. And those that only took fish oil supplements saw disease decline of 15%.

More research is needed to better understand the effects of dietary supplements on autoimmune disease, like lupus. Consult your physician before making any changes to your nutrition and diet. Learn about diet and nutrition with lupus.

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Eli Lilly and Company and their partner Incyte announced they discontinued development of Olumiant® (baricitinib) as a treatment for lupus. The company announced its decision after reviewing data from two large phase-3 clinical trials (SLE-BRAVE 1 and SLE-BRAVE 2) of Olumiant involving more than 1,000 adults with active lupus.

While the first phase-3 trial of Olumiant reached its primary endpoint of demonstrating a statistically significant reduction in lupus disease activity, the follow-up trial did not. Neither trial achieved key secondary endpoints, as well. The company is working with clinical investigators to wind down a long-term extension trial involving participants who successfully completed the earlier phase-3 trials.

Olumiant is an oral medication that inhibits the activity of one or more of the Janus kinase (JAK) family of enzymes involved in interactions among immune cell proteins. It is approved in the US and Europe for treating rheumatoid arthritis in adults with moderately to severely active rheumatoid arthritis who have failed to respond to other treatments. Lilly is also conducting trials of Olumiant for other immune-related conditions and as a potential COVID-19 therapy.

Despite this disappointing decision, there remains excellent momentum to develop new therapies for lupus. Two new medications received FDA approval in 2021 for use in lupus and lupus nephritis, while another previously approved lupus therapy received expanded authorization for treating lupus nephritis. There is a robust pipeline of potential lupus treatments. Learn more about how you can become involved in research and help propel the development of new and more effective therapies.

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New research finds people with class III, IV and V lupus nephritis (LN) or kidney disease share 52 gene expressions and molecular pathways. There are six classes within the LN classification system and treatment is driven by disease classification.

Using NanoString technology, investigators studied immune and information genes in kidney biopsy tissue samples of people with LN class III, IV and V. Gene analysis revealed 52 common gene expressions and pathways. Additionally, further analysis using the same technology revealed presence of biomarkers found in inflammatory cells (type 1 interferon, complement and MHC II molecules). Their presence was most common in class IV LN. Class IV biopsy samples also exhibited increased cellular activity of the protein NF-kB which is involved in immune and inflammatory processes in the body.

Insights into the molecular pathways and inflammatory molecules of kidneys using NanoString technology can lead to better understanding of kidney disease and more targeted treatments for those living with LN. Learn about lupus nephritis.

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New research demonstrates how important it is for women with lupus to continue taking their hydroxychloroquine (HCQ) as prescribed during pregnancy and suggests that higher doses for pregnant women may be warranted. First, the study found that HCQ behaves differently in the body during pregnancy, causing its concentrations in the blood stream to drop more quickly than in non-pregnant users. Additionally, persistently low blood concentrations of HCQ were associated with significantly higher risk of preterm birth.

Researchers followed 56 pregnant women with lupus from their first trimester to their post-partum doctor’s visits and observed how HCQ levels in the bloodstream compared to the levels that would be expected at their given dosages. They found about one in four (25.2%) women had significantly lower-than-expected blood levels of HCQ at some point between their first trimester and post-partum appointment. And, nearly one in five (19.7%) had chronically low HCQ concentrations consistently throughout their pregnancy.

Two-thirds of the women with low average HCQ blood levels had preterm births. Women who delivered their babies early were more likely to have low HCQ concentrations, regardless of race, kidney disease status, and their use of other medications (azathioprine and prednisone). Disease activity was also found to be higher in those with low HCQ concentrations.

A healthy pregnancy is possible for women with lupus, and HCQ (known commercially as Plaquenil®) is safe to continue taking if you become pregnant. Learn more about lupus and pregnancy.

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