The Lupus Research Institute (LRI) National Patient Coalition participated in today's launch of the Lupus Initiative®, the culmination of its five-year advocacy campaign resulting in $4.6 million in Federal funding to make the healthcare provider education program possible.
Helping to draw attention to the need addressed by the Initiative to train professionals in lupus diagnosis, six-time Grammy award winning singer Toni Braxton shared her personal story as a lupus patient and Board member of Lupus LA, an LRI Coalition partner. "It took years to be diagnosed with lupus," said Ms. Braxton. "There were so many signs like joint pain and extreme fatigue, but it wasn't until my white blood cell count dropped twice that I was finally tested for lupus. Proper treatment can only begin after lupus is diagnosed, so early detection is very important."
"As both a lupus patient and member of the LRI National Patient Coalition, I am extremely grateful to Ms. Braxton for speaking on behalf of all of us who worked tirelessly to make the Lupus Initiative a reality," said Kathleen Arntsen, President of the Lupus Foundation of Mid & Northern NY. "Her struggles with misdiagnosis are reflective of my struggles and the struggles of millions in the U.S. and worldwide. It underscores the urgent need for all healthcare providers to be prepared to properly recognize, diagnose and treat lupus."
The Power of the Patients
To help save future lupus patients from years of suffering with undiagnosed symptoms, the LRI began working in 2009 with then HHS Deputy Assistant Secretary for Minority Health, Dr. Garth Graham to find a solution. A federal program was conceived to train physicians and other healthcare professionals about lupus. The Office of Minority Health, Office for Women's Health and the U.S. Surgeon General's Office partnered to develop the new program.
To build support for what evolved into the Lupus Initiative®, LRI Coalition patients nationwide developed a multi-year advocacy campaign to educate Congress about the disease and the need for budgetary support; many key Members of Congress became committed champions.
"We've worked hard for many years to bring attention to the needs of the lupus community, and though there is more work to do, it is encouraging that research has led to new breakthroughs for diagnosis and treatment," said Senator Frank R. Lautenberg (D-NJ). "I applaud the patients and families affected by lupus for their persistence and dedication to this fight and pledge to keep championing their cause."
Congresswoman Lucille Roybal-Allard (D-CA) noted, "Our greatest objective for the Lupus Initiative is to reduce racial disparities that persist in lupus diagnosis and care, particularly among minority populations in disadvantaged neighborhoods. African Americans and Hispanics are two to three times more likely to have lupus than Caucasians. Now we need support from my colleagues in the House and the Senate for funding to disseminate the materials to train healthcare professionals throughout the country."
Culmination of Collaboration
The American College of Rheumatology (ACR) was selected by HHS to manage the Initiative with funding through a cooperative agreement with the Office of Minority Health. LRI leaders take part in an advisory consortium guiding the development of the Initiative.
"The $4.6 million in Federal support generated for the Lupus Initiative exemplifies the power of our patients to effect positive change benefitting the entire lupus community," commented Margaret Dowd, President and CEO, LRI. "We are very grateful for all those who gave their time and energy to make this program possible."
"The LRI Patient Coalition has so much to celebrate today, but they are not going to stop until every healthcare provider can recognize, diagnose and treat lupus," commented Ms. Braxton.