Jenny's Notebook: Behind the Scenes in Lupus Education

Remember in “The Wizard of Oz,” when Dorothy and her intrepid band of travelers finally got in to see the Wizard? To Dorothy, the Wizard was a giant head; the Scarecrow saw a beautiful lady; the Tin Woodman confronted a ravenous beast; the Cowardly Lion faced a ball of fire. Just goes to show, you never know who is behind the scenes making things happen. I want to tell you about a very special group of volunteers from private, public, non-profit, academic, clinical, and scientific organizations, who are working behind the scenes to help the most vulnerable members of the lupus community. The project is called “Eliminating Health Disparities in Lupus Initiative,” or EHDLI, and the Web address is thelupusinitiative.org. The Initiative has been developed and is managed by the American College of Rheumatology (ACR).

Working Together

During the past two years, these lupus patient advocates, researchers and educators, physicians, nurse practitioners, and government officials have created educational materials and programs to help physicians, nurses, medical students, and educators better understand the physical, psychological, and social complexities of lupus. I represent the lupus patients, and I can tell you that a more dedicated group of people would be hard to find. In mid-August, I joined other EHDLI members in Chicago to talk about the Initiative’s first two years, and what we would like to see in Year 3.

L-R, front row:
Jamila Rashid, PhD, MPH, Office of Minority Health, DHHS; Elena Rios, MD, National Hispanic Medical Association; Lisa Amaker, The Lupus Initiative; Greg Dennis, MD, Human Genome Sciences, Inc.

L-R, middle row:
Sheryl McCalla, Esq., The Lupus Initiative; Jenny Palter, Lupus Foundation of America, Inc.; Tammy Utset, MD, MPH, University of Chicago; Margaret Dowd, Lupus Research Institute; Ed Yelin, MD, UCSF Department of Medicine 

L-R, back row:
John C. Davis, Jr., MD, MPH., Genentech, Inc.; Susan Sanders, MSA, Office on Women's Health, DHHS; S. Sam Lim, MD, MPH, Emory University School of Medicine

Joining the meeting by phone, were Mary Beth Bigley, DrPH, MSN, ANP, Office of the Surgeon General, and Edward Treadwell, MD, East Carolina University.

What’s Available?
This is just a sampling of what’s online and/or being developed for the health care professionals and medical students:

• A curriculum for medical students, including:
  - Web-based lecture kit for CME/CE credit
  - video reference library of short teaching modules
  - lupus case studies
• A Practitioner’s Toolkit, including:
  - Culturally Competent Nursing Care: A Cornerstone of Caring and A Physician’s Practical Guide to Culturally Competent Care
  - “Lupus: What You Need To Know”—a DVD designed to promote being proactive
  - Lupus Now magazine
  - physician/patient dialogue tool and symptom tracker
  - posters for doctors’ offices
  - “Ask Me Three: Mrs. Jenkins Visits the Lupus Clinic”—an illustrated story created to enhance treatment compliance 

Waiting for Funding
Additional funding has been requested from the U.S. Department of Health & Human Services, or DHHS), to continue the work of the Initiative for another year. Stay tuned; we’ll definitely make an announcement as soon as we hear anything.

Talk About It!
Be sure to tell your doctors and nurses about thelupusinitiative.org, and if you know any medical students, steer them to the site, as well. And don’t forget to visit the Lupus Initiative Story Bank, where individuals affected by lupus share their thoughts in short videos. I think you’ll be inspired by the stories; and it’s open to all—you might want to post one yourself!

I remain,
Your faithful “behind the scenes” correspondent,
Jenny