New Momentum: Patient Advocacy Victory
This Lupus Awareness Month we spotlight the stunning successes achieved by the patients of the S.L.E. Lupus Foundation as part of the LRI’s 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. 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
“Representing lupus patients across the country is not only an honor, but a responsibility I carry proudly. As a patient, lupus has changed my life incredibly and I want to do everything I can to make the transition as easy as possible for other lupies.”
Adrienne Lynch, President, S.L.E. Lupus Foundation Young Leaders
“Advocating for lupus patients is very important because not everyone knows about this disease. People don't know the total impact it has on my life as a person with lupus or individuals around me that care for me.”
Porscha McNeil, S.L.E. Lupus Foundation Patient Advocate
“My experience on Capitol Hill was very Informative, I feel everyone who attends the support group should get a chance to experience the atmosphere.”
Lena Morgan, S.L.E. Lupus Foundation Patient Advocate
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.