SOURCE: Lupus Foundation of America

Lupus Foundation of America

October 29, 2015 09:00 ET

First-Ever National Public Health Agenda for Lupus Provides Roadmap to Improving Lupus Care and Treatment

Suggested Actions Will Bring Much Needed Attention and Resources to an Underserved Disease

WASHINGTON, DC--(Marketwired - October 29, 2015) - The Lupus Foundation of America, the National Association of Chronic Disease Directors and the United States Centers for Disease Control and Prevention (CDC) convened on Capitol Hill to unveil the first-ever National Public Health Agenda for Lupus to Congressional leaders. The National Public Health Agenda for Lupus identifies public health priorities, strategies and recommendations that are relevant and complementary to efforts in lupus biomedical research and clinical care and serve as a model of a comprehensive approach to lupus care and treatment. The National Public Health Agenda for Lupus was developed by the Lupus Foundation of America and the National Association of Chronic Disease Directors in collaboration with leading lupus and public health advocates. The effort is made possible through funding from the CDC.

Suggested actions outlined in the National Public Health Agenda for Lupus are far ranging, from improving data collection and research, to development of self-management programs, to the development of robust care coordination models and public awareness. The National Public Health Agenda for Lupus is organized and framed under the CDC's Four Domains of Chronic Disease Prevention. The Agenda also addresses health disparities and communication strategies.

"While we have seen progress over the past decade, we still have much work to do to ensure a robust public health and well-funded biomedical research effort," explains Sandra C. Raymond, President and CEO, Lupus Foundation of America. "Lupus is a misunderstood and unpredictable disease, often with devastating consequences. The National Public Health Agenda for Lupus provides, for the first time, a much needed blueprint for all stakeholders to guide action in the fight against lupus."

Lupus activist Brian Kaplan, former member of the Lupus Foundation of America's National Board of Directors, moderated the discussion at today's congressional briefing and shared his personal experiences living with lupus. Presentations were also given by: Representative Tom Rooney (R-FL), Co-chair, the Congressional Lupus Caucus; Medical Epidemiologist Charles Helmick, MD, Centers for Disease Control and Prevention; John W. Robitscher, MPH, President and CEO, National Association of Chronic Disease Directors and Sandra C. Raymond, President and CEO, Lupus Foundation of America.

"Individual health depends on societal health and healthy communities, which is why a public health perspective, in addition to a biomedical approach, is crucial in the fight against lupus," adds John W. Robitscher, MPH, President and CEO, National Association of Chronic Disease Directors. "With the support of our partners, we call upon everyone who took part in today's discussion and all public health and lupus stakeholders to do their part and join together in the fight against lupus. The implementation of the recommendations contained in the National Public Health Agenda for Lupus will require a strong commitment among local, state and national health and public health organizations, advocates, policy makers and people living with lupus."

"Lupus is a complex disease that requires a coordinated and multifaceted approach," says Casey J. Hannan, MPH, Arthritis, Epilepsy and Well-Being Branch Chief, United States Centers for Disease Control and Prevention (CDC). "CDC is committed to enhancing the health and quality of life of people with lupus by supporting the strategies and recommendations outlined in the National Public Health Agenda for Lupus."

The Lupus Foundation of America's role in this initiative complements the Lupus Foundation of America's ongoing research and education efforts and strategies to improve quality and care of people with lupus and find new ways to manage the disease.

Visit lupus.org for more information about the National Public Health Agenda for Lupus.

About Lupus

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 has not kept pace with research for other diseases of similar scope and devastation. For more information, visit lupus.org.

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 lupus, the Lupus Science & Medicine Journal and the Lupus Foundation of America at lupus.org. For the latest news and updates, follow us on Twitter and Facebook.

About the National Association of Chronic Disease Directors

The National Association of Chronic Disease Directors (NACDD) is a nonprofit public health organization committed to serve the chronic disease practitioners in each state and U.S. jurisdiction. Founded in 1988, NACDD connects more than 6,000 chronic disease professionals to advocate for preventive policies and programs, encourage knowledge sharing and develop partnerships for health promotion. NACDD is a national leader in mobilizing efforts to reduce chronic diseases and their associated risk factors through state and community-based prevention strategies. Visit chronicdisease.org for more information about national and state chronic disease prevention and control programs and the National Public Health Agenda for Lupus.

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