Blazing "a" New Trail to Address Lupus

Health Disparities

LEAP: Lupus Education & Awareness

for Patients, Professionals and

Providers

Thometta Cozart, MS, MPH, CHES, MPH

Program Manager

Steven Owens, MD MPH

Director of Health Equity

Liz Traore, MPH

Epidemiologist/Evaluation Manager

DHPE Health Equity Program• Internship Program – Undergraduate and

graduate college students from Minority-Serving

Institutions are placed in 12-week internships

focused on preventing heart disease, increasing

physical activity and promoting proper nutrition

• LEAP: Lupus Education and Awareness

for Patients, Professionals & Providers

Program – National lupus health education

program funded one-year by national OMH

2

National Health Education Program on Lupus

National Objectives

To reduce lupus related health disparities among

racial and ethnic minority populations

disproportionality affected by this disease by

conducting a national lupus education initiative

DHPE LEAP Goals

• Improve Healthy People 2020 outcomes in

and support for African American women

and their families by promoting lupus

awareness, education, diagnosis and

treatment among allied health

professionals, health professionals

students and public health professionals

DHPE LEAP Strategies

• Create and implement sustainable highly

effective partnerships

• Implement a local health department led

community level lupus awareness and education

program

• Award seven mini-grants to state OMH

• Develop culturally and linguistically appropriate

lupus training

DHPE LEAP Partners

• National Association of State Offices of

Minority Health (NASOMH)

• National Medical Association (NMA)

• Robeson County Health Department

• Lupus Foundation of America

• The Lupus Initiative – American College of

Rheumatology

• WebMD

Overview

• Lupus is a chronic disease that seems to be a mystery

• Lupus can take 4-6 years and 3 providers before

diagnosis*

• During that time, organ damage can develop leading to 5

times increased risk of death

• Patients go to primary care providers or emergency rooms

at onset of illness, so detection of lupus by these providers

and health educators is critical to early diagnosis

• Lupus impacts women of color two to three times more

than Caucasians.

* Survey data of health professionals

Abu-Shakra M, Urowitz MB, Gladman DD, Gough J. Mortality studies in systemic lupus erythematosus. Results from a single center.

II. Predictor variables for mortality. J Rheumatol. 1995;22(7):1265-1270.

What is lupus and its various types?

• An inflammatory, multisystem, autoimmune disease of unknown etiology with protean clinical and laboratory manifestations and a variable course and prognosis

• Lupus can be a mild disease, a severe and life-threatening illness, or anything in between

• 70% = Systemic lupus erythematosus

• 10% = Cutaneous lupus erythematosus (includes Discoid)

• 10% = Drug- induced lupus erythematosus

• 10% = Other overlap syndrome or mixed connective tissue disease (MCTD)

Common Signs and Symptoms

• Extreme fatigue (tiredness)

• Headaches

• Painful or swollen joints

• Fever

• Anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)

• Swelling (edema) in feet, legs, hands, and/or around eyes

• Pain in chest on deep breathing (pleurisy)

• Butterfly-shaped rash across cheeks and nose

• Sun- or light-sensitivity (photosensitivity)

• Hair loss

• Abnormal blood clotting

• Fingers turning white and/or blue when cold (Raynaud’s phenomenon)

• Mouth or nose ulcers

Raynaud’s &

vasculitis

Eyes

Skin

Pleurisy

Kidney

disease

Central nervous

system

Oral & nasal ulcers

Pericarditis

Blood

disorders

Joints & arthritis

Muscle

Medical Illustration Copyright © 2012. Nucleus Medical Media. All rights reserved.

Examples of Organs Involved,Signs, and Symptoms

Why is SLE diagnosis so hard?

• The Great Masquerader: can mimic viral syndromes,

malignancies, allergic reactions, stress, etc.

• May be associated with depression and/ or fibromyalgia.

• Initial symptoms might be non-specific: fatigue, achiness,

stiffness, low grade fevers, swollen lymph nodes, rashes.

• Symptoms may develop slowly or suddenly.

• There is no gold standard diagnostic test for lupus

• Wide variety of symptoms and organ involvement may be

present.

Why is early referral important?

• Mortality is higher in lupus patients compared to the general

population

• 5-year survival rate in 1953 was 50%, increased to 90% with

better detection and treatment

• Currently 80 to 90% of lupus patients survive 10 years after

diagnosis, but that drops to 60% with advanced stages of organ

threatening disease

• Leading causes of mortality are preventable

• Appropriate therapeutic management, compliance with

treatment and improved treatment of long-term consequences

can prevent excess and premature deaths. This starts with

clinical suspicion of the diagnosis and early recognition.

American College of Rheumatology Ad Hoc Committee on Systemic Lupus Erythematosus. Guidelines for referral and management of

systemic lupus erythematosus in adults. Arth Rheum 1999;42:1785--96

Mortality

• Cardiovascular disease is the major cause of mortality in

patients with longstanding lupus

• Factors contributing to increased mortality*

- Active lupus & infection (early stages of disease)

- High disease severity at diagnosis

- Younger age at diagnosis

- Ethnicity: Black, Hispanic, Asian, and Native American populations

- Male gender

- Low socioeconomic status

- Poor patient adherence*

- Inadequate patient support system*

- Limited patient education*

*Indicates opportunity for improvement.

Bernatsky S, Boivin JF, Joseph L, et al. Arthritis Rheum. 2006;54:2550-2557.

How can you address lupus disparities?

• Problem: Education about lupus is important for all health

professionals, but there is a lack of knowledge by primary care

and public health professionals

• Solution: Expand lupus education and awareness among

health professionals, including family physicians and nurses,

public health advocates, as well as health educators

• What you can do: Learn signs and symptoms of lupus and

make appropriate referrals

• Our goal: To expand quality education on lupus to improve

detection, increase appropriate referral, and decrease

diagnosis time

DHPE LEAP ActivitiesCreate and

implement

sustainable highly

effective

partnerships

-Faith Tabernacle Christian Center of St. Pauls

-First Baptist of Fairmont

-Judah International Ministries of Maxton

-Sandy Grove Baptist Lumberton

-Shiloh Baptist of Rowland

-St Joseph MRC- Solid Rock Ministries of Red

Springs

Faith-based Activities (NC)

LAP: Lupus Awareness

Program Taskforce

DHPE LEAP Activities

Implement a

local health

department led

community

level lupus

awareness

and education

program

DHPE LEAP ActivitiesAwarded nine mini-grants through state OMHs

• Big Bend Area Health Education Center, Tallahassee, FL

• Cultivating Healthier Options In Communities Everywhere

(C.H.O.I.C.E. Int’l Inc.), McDonough, GA

• Fayette Community Service Organization, Jefferson

County, MS

• Louisiana Bureau of Minority Health Access and

Promotions, Baton Rouge, LA

– Crescent City WIC in Gretna, LA

– Shiloh Missionary Baptist Church in Baton Rouge, LA

DHPE LEAP Activities

Awarded nine mini-grants through state OMHs

• Mount Olive Community Development, Clearwater, FL

• Office Management and Technology, Inc. (OMT, Inc.),

Baltimore, MD

• Pediatric Rheumatology Center at Rutgers Medical

School, New Brunswick, NJ

• Urban Minority Alcoholism and Drug Abuse Outreach

Programs (UMADAOP), Dayton, OH

Fayette Community Service Organization (FCSO)

Learn About Lupus (LAL) Campaign

FCSO's LAL LEAP Report: Fayette, MS

• # of people reached through outreach - 702

• # of people reached through media – 12,413

• May 12th – 9:00 am - Jefferson County Hospital Health

Fair

OMT, Inc. – Baltimore, MD

• Optimal Support Group Meetings to 100

African-American, Hispanic/Latina and Asian American Women

• Advertising on Radio Station and Asian American Newspaperto increase Lupus Awareness Messages to 120,000

• “Grassroots” outreach efforts to reach ethnic/minority communities and increase awareness about LUPUS - 300

• OMT, Inc. will host a “Champions of LUPUS Purple Luncheon” May 21, 2016 at St. Stephens AME Church – Baltimore, MD. Honoring thirty (30) Women who fight this mysterious disease.

• Theme: “I have LUPUS, but LUPUS does not have me”

Living Beyond Lupus ProgramMount Olive Community Development

Corporation - Clearwater, Florida

Over 120 people reached through direct outreach and educational activities

1,653 reached through media channels

May activities: Praying in Purple Lupus Awareness Prayer Breakfast and Walk to End Lupus

Spreading Awareness for

“Loop us and Love us”

Project in

Madison, Florida• Views: 1,513

• Shares: 173

• Madison County Carrier: 3,500

• Madison Enterprise-Recorder: 3,500

Lupus Advisory

Committee

Madison, FL

• 96.1 Jamz—50,000

• Blazin’ 102.3—

58,900

• Reached in-person: 703

CRESCENT CITY WIC SERVICES:N.EW O.RLEANS L.UPUS A.WARENESS PROJECT2nd Annual Bayou Women’s Health Festival CAN Meeting/Lupus Training

May 5, 2016 April 22, 2016

Outreached: 73 individuals Outreached: 27 individuals

Total Outreach: ~ 900 individuals

DHPE LEAP ActivitiesDevelop

culturally

and

linguistically

appropriate

lupus

training

DHPE LEAP ActivitiesDevelop

culturally and

linguistically

appropriate

lupus training

Media Outreach and

Dissemination

Media Outreach and

Dissemination

"As Asian American women celebrate the year of the Red Monkey for

Chinese New Year, remember February is also American Heart Month.

Since Asian American women are twice as likely to have lupus as Whites

and 1 in 3 lupus patients have heart disease, OMT, Inc. urges you to learn

the signs and symptoms of Lupus and Heart Disease during this New Year

at Lupus.org and Heart.org!"

Media

Outreach and

Dissemination

DHPE Lupus Program Support Team, Contact:

Steve Owens, MD, MPH

Director of Health Equity

sowens@dhpe.org

Thometta Cozart, MS, MPH, CHES, CPH

Program Manager

tcozart@dhpe.org

Liz Traore, MPH

Epidemiologist and Evaluation Manager

etraore@dhpe.org