Senate Appropriations Committee approves a draft of the fiscal year (FY) 2014 Labor-Health and Human Services-Education appropriations bill.
Announcing a New Initiative to Improve Health and Quality of Life
LFA-REAL™ System is first-of-its-kind tool to bring patients deeply into the development process
(WASHINGTON, DC) March 19, 2014 - The Lupus Foundation of America announced today that it is funding and leading the development of a first-of-its-kind tool to monitor lupus disease activity called the LFA-REAL™(Rapid Evaluation of Activity in Lupus) System. LFA-REAL will address major challenges in lupus treatment and disease management, and has the potential to greatly improve medical care and quality of life for people living with this unpredictable and misunderstood autoimmune disease.
“One of the biggest problems in patient care is the lack of tools which clinicians can use to make and assess treatment decisions,” explains Sandra C. Raymond, President and CEO of the Lupus Foundation of America. “The Lupus Foundation of America is developing LFA-REAL in collaboration with a multi-stakeholder group, including top lupus experts, doctors, researchers, drug development companies, agencies of the federal government, people with lupus and health insurers. The system will engage patients as partners in their own care, enabling informed shared decisions that can improve health, identify better treatments for each person’s unique situation and potentially improve insurance coverage of current and future treatments.”
“We are working to solve a real concern in patient care by developing LFA-REAL,” says Joan T. Merrill, MD, Head of the Clinical Pharmacology Program at the Oklahoma Medical Research Foundation and Medical Director for the Lupus Foundation of America. “Physicians in practice are being asked for accurate, validated benchmarks in quality assurance programs and to support insurance justifications for the use of expensive medications. Current tools to assess lupus disease activity are burdensome, unwieldy or incorrectly performed by people who are not properly trained. The LFA-REAL System offers a solution by giving clinicians a simple but reliable method to quantify the progress of their complicated lupus patients.”
LFA-REAL will use a series of simple questions to determine a treatment’s impact on the patient’s health and quality of life. It will be easy to use with web and mobile-based options.
The concerns addressed by LFA-REAL go beyond the clinic and also tackle barriers in the development of new lupus treatments. People with lupus need an arsenal of targeted, safe and more tolerable therapies to bring the disease under control and greatly improve their quality of life. LFA-REAL has the potential to provide important data that could simplify the process of approving new lupus therapies.
Furthermore, in an environment where insurance companies are critically looking at the value and cost of care, LFA-REAL can offer information that will support insurance coverage for current and new treatments.
“The increased focus on cost control has led many health insurers to mandate that doctors provide solid evidence that a drug will provide real benefit to a patient and demonstrate an effective use of health care dollars,” adds Ms. Raymond. “This requirement already is creating a challenge for many healthcare providers who feel they are not properly equipped to accurately respond to this request using tools currently available. LFA-REAL will be a simple method that can show health insurers these new treatments are cost effective at managing lupus.”
Over the next three years, the Foundation will lead a multi-stakeholder group to develop and test the tool at multiple clinics across the country. More information about LFA-REAL can be found on line at lupus.org/LFAREAL.
Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with and a challenge to treat. Lupus is a cruel mystery because it is hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure. Its health effects can range from a skin rash to a heart attack. Lupus is debilitating and destructive and can be fatal, yet research on lupus remains underfunded relative to diseases of similar scope and devastation.
About the Lupus Foundation of America
The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, the Foundation leads the fight to improve the quality of life for all people affected by lupus. Learn more about the Lupus Foundation of America at lupus.org. For the latest news and updates, follow us on Twitter and Facebook.
About the Lupus Foundation of America National Research Program
The Lupus Foundation of America National Research Program: Bringing Down the Barriers™ aggressively seeks to advance the science and medicine of lupus and to improve the quality of life for people with lupus. For nearly 40 years, research supported by the Lupus Foundation of America has led to expanded understanding of the disease and contributed to many of the lupus-related scientific breakthroughs of the past several decades.
Awards Will Support Efforts of Tomorrow’s Lupus Thought Leaders to Solve the Cruel Mystery of this Unpredictable and Devastating Disease