African Americans, Hispanic Mexicans hard hit by lupus

[Guest guest]

May 17, 2004

African Americans, Hispanic Mexicans hard hit by lupus

New York, NY - Systemic lupus erythematosus (SLE) is more severe in certain

ethnic groupsparticularly African Americans and Hispanic Mexicans, according

to new data presented here at the 7th International Congress on Systemic

Lupus Erythematosus and Related Conditions.

Vigilance and extra care is needed to help bridge these gaps and improve

outcomes among minority populations with SLE, say experts.

Stunning disparities in lupus nephritis

In new data from the ongoing PROFILE study [1], 1 of the largest multiethnic

SLE cohorts worldwide, renal involvement and end-stage renal disease

occurred more frequently in African Americans and Hispanics of Mexican

ancestry with SLE, compared with whites and Hispanics from Puerto Rico with

this autoimmune disease.

In the study of 1005 SLE patients, 59% of African Americans and 61% of

Hispanic Mexicans had renal involvement. By contrast, 31% of white and 20%

of Hispanic Puerto Rican patients had renal involvement.

Moreover, 10% percent of Hispanic Mexicans developed end-stage renal

disease, as did 5% of African American SLE patients, the data show. Only 4%

of white patients and none of the Hispanic Puerto Ricans developed end-stage

renal disease.

The cohort included 109 Hispanic Mexican patients, 90 Hispanic Puerto

Ricans, 339 African Americans, and 467 whites recruited from several

centers. All patients were older than 16 and had SLE for less than 10 years.

Specifically, Hispanic Mexicans were the youngest at enrollment. Hispanic

Mexicans and African Americans had the lowest education level and were less

likely to be employed or have health insurance, compared with their

counterparts of other ethnicities.

These findings have " direct applicability to the management of SLE in ethnic

minorities, " said study author Dr Calvo-Alén (University of Alabama,

Birmingham).

" Lupus is clearly more severe in non-Caucasians, and that severity is

particularly illustrated in Hispanic Americans with the rate of kidney

damage that progresses to dialysis, " Dr D Reveille (University of Texas

Health Science Center, Houston), a coauthor on the same paper, tells

rheumawire.

" It is worse than any other ethnic group, " he says. " Vigilance and extra

care are needed in minorities with lupusespecially in those with kidney

involvement to stop [this trend] from occurring. "

Such vigilance should include keeping hypertension under strict control, he

suggests.

Exactly why these disparities exist is unknown, he says. " Some of the

[racial disparities] can be explained by sociodemographic differences,

though mounting evidence points also to a genetic contribution to disease

severity, " he says.

Barriers to care for minority SLE patients

Many barriers remain to appropriate care for minority SLE patients, says Dr

Ellen M Ginzler (State University of Knew York Downstate Medical Center,

Brooklyn). They include the cost sharing required by many healthcare plans,

which are magnified as patients become sicker, and for SLE patients on

disability, COBRA [Consolidated Omnibus Budget Reconciliation Act] benefits,

which are expensive and expire after 18 months.

" Qualified private specialists may not be available in a convenient

geographical area, " she says. In addition, until recently, Medicare did not

have a prescription-drug plan, she explains.

From grass roots up: solutions abound

Dr Chu (New York City Health and Hospitals Corporation) says that a

computerized disease registry can help ensure quality care of minorities

with SLE. " It can track how well our patients do over time and how well we

interface with our patients to get the outcomes, " he says. In addition, such

registries can embed evidence-based guidelines into daily clinical practice

to augment decision-making abilities.

Such a system is in the final stages of completion at the hospitals that Chu

represents.

Other ways to reach minorities with SLE and those at high risk include

awareness and outreach programs, state-of-the-art scientific seminars, and

medical-education programs, says Frances E Ashe-Goins (US Department of

Health and Human Services, Bethesda, MD), who heads such SLE-related

programs for the Office of Women's Health.

Margaret G Dowd (SLE [Lupus] Foundation) urges grassroots awareness

campaigns within hard-hit communities. Dowd, the executive director of the

foundation, says that bilingual medical staffs and local steering

communities can help bridge gaps.

Such a programthe New York City Lupus ativeis being test-marketed in

East Harlem in New York City. So far, the program has enabled 900 clients to

receive direct service.

Summing up the racial disparity issues with SLE, Dowd says " SLE is difficult

to diagnose, difficult to treat, and devastating to live with. Magnify that

by 100-fold if you are poor and living in a truly disadvantaged area of the

city. "

Mann

Source

1. Calvo-Alén J, Petri M, Reveille JD, et al. Presentation: Renal

involvement and damage are more are more frequent in African Americans and

Hispanics of Mexican ancestry than in Caucasians and Hispanics from Puerto

Rico. New York, NY: 7th International Congress on Systemic Lupus

Erythematous and Related Conditions: Session on long term outcome: heart and

vessels; May 9-13, 2004:Abstract 11A.