New Momentum: Patient Advocacy Victory
We would like to spotlight the stunning successes achieved by our National Coalition of advocates across the country. People with lupus, their families and friends — the heroes who make a real difference.
LRI Patient Advocates Raise $4.6 Million to Advance Lupus Diagnosis
Secure U.S. Congressional Support for New Federal Program
The outlook for patients is best when lupus is treated early. But treatment cannot begin without a diagnosis. And diagnosis is elusive if healthcare professionals don’t consider lupus.
LRI’s patient advocates walked the halls of Congress to raise the funding to prevent others from enduring years of misdiagnosis. The need was particularly critical in underserved communities where racial disparities prevail. The LRI collaborated with the Office of Minority Health to conceive the program and secured nearly $5 million from Congress to make it possible.
Speaking about the importance of education for healthcare providers Dr. Garth Graham of the Office of Minority Health noted, “When I was a medical student, I learned little about lupus. Like many practitioners, I delayed treatment for a patient because I didn't know she had lupus. I want to make sure providers know lupus when they see it so future patients can begin treatment as quickly as possible.”
Hear directly from the advocates whose tireless work is now getting lupus diagnosed.
Patient Advocates Tell Their Stories
“Because lupus is highly unpredictable and there is still no specific diagnostic test, it is imperative that patients approach their healthcare providers with any symptoms and hope that their physicians take them seriously, are knowledgeable about autoimmunity and take action. Early diagnosis and treatment are vital components in reducing the physical and economic impact of autoimmune diseases like lupus.” –Kathleen Arntsen, Lupus Foundation of Mid & Northern New York | Read Kathleen’s Story
“Lupus patients of California have crossed the country 10 times to educate Congress on the desperate need to improve diagnosis of a disease too often overlooked. Personally it is so great to know that I can help make a difference. I live well with lupus but seeing and knowing that young women are suffering breaks my heart.” –Deirdre Baptista, Lupus LA | Read Deirdre’s and Twin Sister Kirsten’s Story
“I am so proud of the Coalition and what we have accomplished together as united patients and families impacted by lupus. We did it!” –Maggi McQueen, Lupus Foundation of Florida, Inc.
“Every Spring, for the past five years, Lupus Patient Advocates have appealed to members of the House and Senate to secure annual funding for a federal Lupus education program. Despite the current state of the economy, we are proud to have successfully secured substantial Congressional support.” –Dina Thachet, LRI Chicago
Read Dina’s Story
Getting the Lupus Initiative Off the Ground
Once our patient advocates secured initial funding from Congress, the American College of Rheumatology (ACR) was selected to develop a new curriculum training physicians and allied healthcare professionals to recognize, diagnose and treat lupus.
Every year since our patient advocates succeeded in gaining increased funding to keep this program moving forward. They are true patient champions!
The culmination of the work of so many will be introduced at a launch event hosted by the ACR May 16. All constituencies potentially involved in recognizing and treating lupus will have the opportunity to review the comprehensive medical school curriculum and provider training materials.
Join Us to Keep It Going!
As much as lupus patients have achieved, we are not done. The Lupus Initiative curriculum must be adopted by medical schools and healthcare providers nationwide. Please urge your legislators to support 2014 funding to make sure that every medical student and healthcare professional is trained to consider lupus as a potential diagnosis.