From the Archives: Summer 2005 Lupus Now magazine
EQUAL CARE NEEDED: Health disparities affect those who are most at risk for lupus young women of color
by Phyllis McIntosh
For Arletha Manlove, 41, of Kansas City, MO, the symptoms started when she was 22, shortly after the birth of her daughter. First it was the tiredness, then low-grade fevers and aching joints, and eventually fatigue so severe that she could hardly eat or leave the house. The specialists she saw blamed her problems on everything from intestinal gas to lack of attention from her husband. By the time a fertility specialist diagnosed her with lupus five years later, she had suffered four miscarriages and resigned herself to the fact that she might die young.
Georgetta Carter, 65, of Houston, suffered with similar symptoms for 10 years before a dermatologist confirmed in 1983 that lesions and pigmentation on her face were indeed the result of lupus. The diagnosis came only after Carter told the dermatologist that reading her grandmother’s old medical book convinced her that "I had either lupus or leprosy."
These two African American women have managed to cope with lupus. Manlove now has two children, works full time as a senior services coordinator for a nonprofit organization, and is president of the Board of the Kansas City chapter of the Lupus Foundation of America. Carter, still troubled by frequent flares, works at home as a certified public accountant.
However, not all women of color with lupus function as well. Vicki Jensen,* also of Kansas City, MO, a single mother on welfare, struggled with symptoms of lupus for five or six years and was repeatedly told by general practitioners that nothing was wrong until she went into kidney failure. Now in her mid-40s, she suffers from memory loss and severe migraines, and she requires dialysis treatment as she waits for a kidney transplant.
Factors That Play a Role
For reasons researchers are still trying to unravel, lupus is two to three times more common among African American, Hispanic, Asian, and Native American women than among Caucasians. For many of these minorities, the lack of access to adequate healthcare means symptoms of lupus can go undiagnosed for some time -- often until severe complications arise. And as minority populations grow in the United States -- Hispanics, for example, are expected to account for nearly a quarter of the country’s population by 2050 -- such health disparities will have a greater impact on the nation’s economy and overall health status.
Most of what we know about lupus among women of color comes from the ongoing LUMINA (LUpus in MInorities: NAture versus Nurture) study, funded by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), part of the National Institutes of Health (NIH). Over the past 12 years, LUMINA researchers at the University of Alabama at Birmingham, the University of Texas-Houston Health Sciences Center, and the University of Puerto Rico Medical Sciences Campus at Galveston have studied 600 lupus patients between the ages of 20 and 50.
The researchers found that lupus typically strikes minority women in their 20s instead of the 40s as in Caucasians. Many other disparities with lupus have also been pinpointed (see sidebar). The reason for these disparities is "probably some combination of genetic and socioeconomic factors, but how they intertwine is not clear at this point," says Graciela Alarcón, M.D., of the University of Alabama at Birmingham, lead investigator for the LUMINA study.
Indeed, there is evidence that socioeconomic and demographic factors such as income, employment, education, and health insurance do play a major role in the course of lupus. The Centers for Disease Control and Prevention (CDC) found that between 1979 and 1998, the death rates from lupus increased nearly 70 percent among African American women between the ages of 45 and 64. According to the CDC, possible reasons for this trend include "later diagnosis, less access to health care, less effective treatments, and poorer compliance with treatment recommendations."
Minorities often receive less effective treatment or fail to comply with recommendations because they cannot afford to see a doctor regularly or to purchase the necessary prescribed medications. Statistics show, in fact, that the percentage of Hispanic women who are uninsured is almost three times the percentage of uninsured Caucasian women.
The CDC also found that women who live below the poverty line are 57 percent more likely to lack a regular source of medical care. Those living in low-income areas lack neighborhood healthcare facilities, which contributes to the lack of available information about disease symptoms and when to seek care. A 2004 study by NIAMS, based on data from the National Center for Health Statistics, further concluded that deaths from lupus may be more prevalent among minorities with low levels of education than available data suggest because of "underreporting and underdiagnosis" of lupus cases.
Spreading the Facts
The good news is that organizations ranging from federal agencies and national medical associations to local lupus chapters are turning their attention to these health disparities and are increasing efforts to provide better health information and medical care to those with the greatest need.
Early LUMINA findings drew attention to the need to educate both minority women and healthcare providers about lupus. At the federal Office on Women’s Health (OWH), action was also inspired by personal tragedy: In 1999, the niece of OWH policy director Frances Ashe-Goins and the niece of one of her colleagues both died in their 20s from complications of lupus. Soon after, Ashe-Goins joined with the LFA to launch a project called "Unlocking the Mystery of Lupus." Programs targeted first to federal employees led to a Lupus National Town Hall Meeting on Capitol Hill in the spring of 2001.
Since 2002, OWH has collaborated with local lupus chapters and other community organizations to present more than 100 lupus awareness programs in cities with large minority populations and a high incidence of lupus. More recently, programs have expanded to rural areas to reach groups such as Native Americans in Arizona and African Americans on the Sea Islands of South Carolina.
Lupus may be difficult to diagnose because it’s often mistaken for other diseases. Also, the signs of the disease differ from person to person. For this reason, people often require the most basic information about the condition and its symptoms, notes Susan Russell Sanders, public health adviser with OWH. "They need to learn that you can’t catch lupus, or that a family member with lupus really is tired, not lazy or crazy."
OWH has also collaborated with another federal agency, the Health Resources and Services Administration (HRSA), to educate healthcare professionals through community health centers nationwide. "Once the health care providers were aware this was something they had to look for, they found out that many of their clients actually had lupus," Ashe-Goins says.
Through a partnership with OWH, the Black Women’s Health Imperative, which has chapters throughout the country, is planning to feature more lupus information on its website, including a physician locator service to direct people to the nearest lupus expert.
In a more low-tech effort to publicize lupus, participants in lupus awareness programs are assembling two quilts inspired by the AIDS Memorial Quilt. One is a memorial quilt that honors those who have died of lupus; the other, a survivors’ quilt, celebrates the many who are successfully coping with the disease. Over the next year the quilts will be displayed by all the community organizations were part of the 2003–04 "Unlocking the Mystery of Lupus" campaign
Local programs like the Lupus Learning series offered by the LFA, Kansas City chapter are geared to help the newly diagnosed "understand what they’re dealing with, so they can see the hope in it," says Manlove. Some two-hour Saturday morning sessions provide an overview of what to expect and how to manage job and family, while others may focus on specific topics like neurological complications or the risks of pregnancy. Still others provide practical information about free services -- flu shots, for instance -- and how to negotiate the system to apply for Social Security disability benefits or other assistance. Speakers include physicians, social workers, and, most important, other lupus patients. “Many people lupus live in a bubble,” says Manlove. “They need to know they’re not alone.”
This year for the first time the Kansas City chapter is staging a special youth program called “You Rock” at an indoor amusement center. “From my experience, a good 30 percent of people being newly diagnosed are under 18, and quite a few are boys in the 11 to 12 age group,” Manlove says. “College students with lupus are coming to help, so the kids can know that other young people are surviving well with it.”
Lupus educators stress the importance of respecting the culture of any community they are trying to reach. That may be as simple as scheduling programs to accommodate women who do not hold 9-to-5 jobs. Or, it may mean involving male partners or fathers in a male-dominated culture, as well as recognizing that many women who are single mothers tend to sacrifice their own health to care for their families.
While some, like Manlove, think education is paying off in earlier diagnosis of lupus, others caution that the situation remains grim for minorities in many parts of the country. Catherine Thomas, the former president of the Texas Gulf Coast LFA chapter in Houston, and now active in lupus awareness in Lake Charles, LA, notes that when she volunteered at a Houston medical center, “there were any number of women who walked into the clinic, waited hours to see a doctor, were given prescriptions, and walked away knowing that they wouldn’t be able to buy those medications. When they came back for their next visit, unless the doctor or staff probed enough, the usual assumption was that the medication wasn’t working, rather than that the person wasn’t taking it.”
In Lake Charles, the situation is worse, Thomas adds. Lupus patients who cannot afford to see one of the two private rheumatologists in Lake Charles must travel four hours to New Orleans or six hours to Shreveport for proper diagnosis or treatment. “Not only are the services limited here, but our funding for education programs is limited as well,” Thomas says. “We’re scrambling to meet a need that outnumbers us.”
The situation may be worst of all for Native Americans, who typically live in rural areas far from major medical centers. “In all of Alaska, there is the equivalent of only one and a half full-time rheumatologists for a population of 600,000,” explains Jan Hillson, M.D., a Native American rheumatologist in the Lupus Clinic of the University of Washington in Seattle. “A lot of Native Americans are insured only through the Indian Health Service (IHS), which employs only one half-time rheumatologist in Alaska. On the Olympic Peninsula [of Washington], there is no rheumatologist at all, so a Native American there has to make a four-to five-hour drive and take a ferry to Seattle to be seen where IHS insurance is accepted. For someone with a disease like lupus, that kind of travel is incredibly difficult, especially when they need to be seen every few weeks.”
Hillson notes that the primary caregivers in the IHS are usually nurse practitioners. “Their training in specialty medicine is very, very limited, which leads to late recognition and treatment.” Another “immense problem,” she adds, is that the IHS does not provide sufficient access to the newest drugs being used to treat lupus.
A Brighter Outlook
There is hope, however, that the new national focus on health disparities may change the outlook for minorities living with all sorts of diseases, including lupus. The National Center on Minority Health and Health Disparities, created in 1990 by Congress as part of NIH, recently awarded $24 million to 22 institutions and more than 200 individuals for research on health disparities.
This January, the National Medical Association (representing African American physicians) and the National
Hispanic Medical Association joined with the American Medical Association and more than 30 other health organizations to form a Commission to End Health Care Disparities. Four committees are already at work to survey physicians about healthcare disparities and what causes them, raise awareness of the issue among health professionals, develop education programs for healthcare personnel, and encourage more minorities to become physicians.
Ultimately, it comes down to a personal level. “In order to close the gap in knowledge about lupus, people need to reach out first to their inner circle and to organizations they belong to and say this is a problem within our community,” Ashe-Goins advises. “Those organizations can call on lupus chapters to come talk to them. The next level is to reach out to community leaders, [who] can reach out to elected officials, who in turn can reach out to Congress.”
Closing that gap also depends on the dedication of individuals like Manlove, who says, “I am extremely bothered by fatigue and am susceptible to every cold and flu. But I try to use every ounce of me to keep moving and being a vehicle of hope for those out there who’ve been told they have lupus and have no support system and no real idea what to do next.”
*Vicki Jensen is a pseudonym.