Lupus Foundation of America Provides Comments on Future Direction of the National Institutes of Health
For people living with lupus, research can provide hope - hope for better treatments, earlier diagnosis, and improved quality of life. That is why protecting and strengthening federal research funding is one of the Lupus Foundation of America’s (LFA) top advocacy priorities.
The National Institutes of Health (NIH) is the largest funder of lupus research in the United States. The NIH's involvement in lupus research has spurred some of the most important medical breakthroughs in the field, and they are one of our most valuable partners in the fight against this disease.
Recently, the LFA responded to the NIH’s request for information (or comment period) on the NIH-Wide Strategic Plan for Fiscal Years 2027–2031. This strategic plan will help shape NIH research priorities over the next several years, and the Lupus Foundation of America is working to ensure lupus remains a major focus across NIH Institutes and Centers.
The LFA’s recommendations focused on several important areas where the lupus community still faces major challenges. One top priority is improving understanding of the disease. Lupus is incredibly complex and can affect nearly every organ in the body, including the kidneys, heart, lungs, brain, and skin. Symptoms vary widely from person to person, which makes lupus difficult to diagnose and treat. The LFA called for increased investment in research studying the causes of lupus, including the immune system, genetics, and environmental factors. The LFA’s comments also stress that patients must remain at the center of research efforts. Research should focus not only on disease activity, but also on issues that matter most to patients, including fatigue, pain, mental health, ability to work, and overall quality of life.
Early diagnosis is another major concern for the lupus community. Many patients spend six or more years searching for answers before finally receiving a diagnosis. During that time, lupus may continue damaging organs and affecting quality of life. The LFA recommended stronger investments in screening tools, early detection research, and physician education to help patients get diagnosed sooner.
The LFA also pushed for faster development of safer and more effective treatments. While progress has been made in recent years, many people with lupus still struggle to find medications that control their disease without serious side effects. The LFA encouraged NIH to support innovative clinical trials, precision medicine research, and studies that include the diverse populations most affected by lupus.
In addition to supporting research, the LFA’s comments highlighted the importance of building the next generation of lupus researchers. The letter emphasized the need for increased support for young scientists, physician researchers, and interdisciplinary teams working across fields like immunology, genetics, public health, and data science, which will strengthen U.S. research efforts.
When NIH’s strategic plan is finalized, it will provide much needed direction for the agency as a whole on the future of our nation’s research priorities. The Lupus Foundation of America will continue advocating for strong NIH funding and policies that advance lupus research.
The Lupus Foundation of America advocates at every level of government to support people living with lupus and ensure that their voices are heard by federal and state policymakers on Capitol Hill, in Washington, DC, and in state capitals across the country. Read more about our lupus advocacy efforts here.
In Washington, DC and state capitals around the country, Lupus Foundation of America advocates tell their stories and urge their elected officials to support policies that improve the lives of people affected by lupus. Sign up today to stay up-to-date on these efforts and ways you can add your voice to the fight.