info

[Guest guest]

OBSERVER STAFF REPORT

There is an urgent need for more education and research to address the fact

that minority women are disproportionately impacted by the autoimmune disease

lupus, according to experts.

This fact was recently discussed at a panel at the roundtable forum,

“Racial Disparities in Lupus: Strategies for Intervention in Minority

Communities,” sponsored by the S.L.E. Lupus Foundation and the New York

City Health and Hospitals Corporation, as part of the 7th International Congress

on S.L.E. and Related Conditions.

In conjunction with the event, Chu, MD, MPH, President of the New York

City Health and Hospitals Corporation, presented a proclamation recently from

the Mayor’s Office at Gracie

Mansion calling for more

attention to lupus as a serious health threat to women.

Congressman B. Rangel, 15th Congressional District, New York, ranking

member of the House Ways

and Means Committee and dean of the New York Congressional Delegation, is

expected to offer welcoming remarks and comment on the issues of the Forum.

“This Forum kicks off a year-long campaign in which New York City health

organizations and lupus organizations are joining forces to raise awareness and

understanding of lupus and to encourage early detection, particularly in

minority women,” said Margaret Dowd, executive director, S.L.E. Lupus

Foundation, one of the country’s leading lupus organizations with

headquarters in New York and Los Angeles.

“There is mounting evidence that Hispanic and African American women have

a higher incidence of lupus, more serious complications and higher mortality

rates,” noted D. Reveille, MD, Director, Division of Rheumatology

and Clinical Immunogenetics, University of Texas-Houston Health Science Center.

“Lupus is one of Americas’

least-recognized diseases in terms of public awareness and medical attention in

proportion to the number of people it affects and its severity.”

Lupus is a chronic autoimmune disorder that primarily attacks women of

childbearing age and can affect virtually any organ of the body. The

body’s immune system, which normally functions to protect against foreign

invaders, becomes hyperactive, forming antibodies that attack normal tissues

and organs.

It

is estimated that approximately 1-1.5 million Americans may have lupus. Females

are at greatest risk; 90 percent of Americans with lupus are women. The ongoing

NIH study, LUMINA (Lupus in Minorities: Nature versus Nurture), which began in

1993, found that Hispanic and African American patients tend to develop lupus

earlier in life, experience greater disease activity and more severe disease

than Caucasians. Hispanic women have a poorer prognosis overall and are more

likely to have kidney damage.

“Three

factors - disease activity, disease damage, and poverty-appear to be the most

important determinants of mortality in multi-ethnic lupus patients in the U.S.,”

Reveille said.

Ellen Ginzler, MD, MPH, Chief of Rheumatology, SUNY Downstate Medical Center, New

York, noted that the average annual cost to treat

lupus is estimated at $6,000-10,000 per person. The cost of medications can

exceed several thousand dollars/month. Other costs may include hospitalization

and kidney dialysis.

“In the past, hospitals have passively waited until patients with

episodes of illness came through the doors for care,” Chu

said. “Now we are developing disease registries to track and improve care

for the patients we serve. A registry like the one HCC is using for

cardiovascular and other diseases could also be developed for lupus patients.

Intervening to treat lupus earlier, including referrals and access to specialty

care, would go a long way toward making a difference in outcomes.”

Frances E. Ashe-Goins, RN, MPH, Deputy Director, Office on Women’s Health, U.S.

Dept. of Health and Human Services, discussed OWH strategies for reduction of

health disparities for women with lupus, including regional scientific

educational sessions, national community outreach awareness programs, state of

the science seminars, and medical professional education programs including

nursing organizations.

Dowd described the NYC Lupus ative - a collaborative program consisting

of an integrated network of health and supportive services to improve the care

and quality of life for lupus patients and their families in underserved New York City

communities. NYCLC centers in East Harlem and the South Bronx have reached out

to more than 30,000 people-primarily young, female Hispanics and African

Americans - and provided direct client services to close to 900 people.

http://www.sacobserver.com/health/060704/lupus_minority_women.shtml

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[Guest guest]

I thought this was interesting because when I was diagnosed with Lupus, my daughter told a friend and co-worker who has Lupus, and is African -American, and she said, "I thought only Black People get Lupus!

That goes to show how uninformed we are about this disease.

C.

info

OBSERVER STAFF REPORT

There is an urgent need for more education and research to address the fact that minority women are disproportionately impacted by the autoimmune disease lupus, according to experts.

This fact was recently discussed at a panel at the roundtable forum, “Racial Disparities in Lupus: Strategies for Intervention in Minority Communities,” sponsored by the S.L.E. Lupus Foundation and the New York City Health and Hospitals Corporation, as part of the 7th International Congress on S.L.E. and Related Conditions.

In conjunction with the event, Chu, MD, MPH, President of the New York City Health and Hospitals Corporation, presented a proclamation recently from the Mayor’s Office at Gracie Mansion calling for more attention to lupus as a serious health threat to women.

Congressman B. Rangel, 15th Congressional District, New York, ranking member of the House Ways and Means Committee and dean of the New York Congressional Delegation, is expected to offer welcoming remarks and comment on the issues of the Forum.

“This Forum kicks off a year-long campaign in which New York City health organizations and lupus organizations are joining forces to raise awareness and understanding of lupus and to encourage early detection, particularly in minority women,” said Margaret Dowd, executive director, S.L.E. Lupus Foundation, one of the country’s leading lupus organizations with headquarters in New York and Los Angeles.

“There is mounting evidence that Hispanic and African American women have a higher incidence of lupus, more serious complications and higher mortality rates,” noted D. Reveille, MD, Director, Division of Rheumatology and Clinical Immunogenetics, University of Texas-Houston Health Science Center. “Lupus is one of Americas’ least-recognized diseases in terms of public awareness and medical attention in proportion to the number of people it affects and its severity.”

Lupus is a chronic autoimmune disorder that primarily attacks women of childbearing age and can affect virtually any organ of the body. The body’s immune system, which normally functions to protect against foreign invaders, becomes hyperactive, forming antibodies that attack normal tissues and organs.

It is estimated that approximately 1-1.5 million Americans may have lupus. Females are at greatest risk; 90 percent of Americans with lupus are women. The ongoing NIH study, LUMINA (Lupus in Minorities: Nature versus Nurture), which began in 1993, found that Hispanic and African American patients tend to develop lupus earlier in life, experience greater disease activity and more severe disease than Caucasians. Hispanic women have a poorer prognosis overall and are more likely to have kidney damage.

“Three factors - disease activity, disease damage, and poverty-appear to be the most important determinants of mortality in multi-ethnic lupus patients in the U.S.,” Reveille said.

Ellen Ginzler, MD, MPH, Chief of Rheumatology, SUNY Downstate Medical Center, New York, noted that the average annual cost to treat lupus is estimated at $6,000-10,000 per person. The cost of medications can exceed several thousand dollars/month. Other costs may include hospitalization and kidney dialysis.

“In the past, hospitals have passively waited until patients with episodes of illness came through the doors for care,” Chu said. “Now we are developing disease registries to track and improve care for the patients we serve. A registry like the one HCC is using for cardiovascular and other diseases could also be developed for lupus patients. Intervening to treat lupus earlier, including referrals and access to specialty care, would go a long way toward making a difference in outcomes.”

Frances E. Ashe-Goins, RN, MPH, Deputy Director, Office on Women’s Health, U.S. Dept. of Health and Human Services, discussed OWH strategies for reduction of health disparities for women with lupus, including regional scientific educational sessions, national community outreach awareness programs, state of the science seminars, and medical professional education programs including nursing organizations.

Dowd described the NYC Lupus ative - a collaborative program consisting of an integrated network of health and supportive services to improve the care and quality of life for lupus patients and their families in underserved New York City communities. NYCLC centers in East Harlem and the South Bronx have reached out to more than 30,000 people-primarily young, female Hispanics and African Americans - and provided direct client services to close to 900 people.

http://www.sacobserver.com/health/060704/lupus_minority_women.shtml

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