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Health Matters for Women^™
Summer 2002

Summer 2002 PDF    INSIDE THIS ISSUE Highlight - Top Killers of Women Cover Story - Helping Women Understand Bleeding Disorders News You Can Use - Diabetes - Move It! - Safe Motherhood - Fertility - Violence - If You're Tanned, You're Toast International - Pregnancy a Big Risk for Afghan Refugees CDC Spotlight - CDC's Injury Center Prevention Works - PRAMS Collects Pregnancy Data - Mammograms Dates That Matter CDC Resources RELATED LINKS Newsletter Archive Order a copy

HIGHLIGHT

Top Killers of Women
The leading causes of death for U.S. women in 1999, according to "Deaths: Leading Causes for 1999," CDC's comprehensive report on U.S. causes of death:

1. Heart disease
2. Cancer
3. Stroke
4. Chronic lower respiratory disease
5. Diabetes
6. Influenza and pneumonia
7. Accidents
8. Alzheimer's disease
9. Kidney disease
10. Septicemia

Data on leading causes of death are now available by age, gender, race and Hispanic origin. Access the report at: www.cdc.gov/nchs/about/major/dvs
/mortdata.htm or contact the National Center for Health Statistics at 301-458-4636.

COVER STORY

Helping Women Understand Bleeding Disorders
Up to 2 million women in the United States may have an inherited bleeding disorder and not know it. Many of these women learn to live with the problems their bleeding causes, such as heavy periods, and don’t realize that they could have a bleeding disorder. Other women may have more serious bleeding problems such as hemorrhages after childbirth or surgery, and some have hysterectomies to end their heavy periods. With proper diagnosis of their condition, women with bleeding disorders could avoid these complications and surgeries.

The most well-known bleeding disorder is hemophilia, because of its prevalence among royal families in Europe. Hemophilia affects about 17,000 men in the United States and is rarely found in females. But the most common bleeding disorder is von Willebrand disease (VWD), which affects about 1 to 2 percent of people in the United States.

The disease is named after Erik von Willebrand, who first described it in 1926 in a large Scandinavian family. It came to his attention because a young woman in the family had profuse bleeding during her menstrual period. VWD is caused by a deficiency or defect in the body’s ability to make a protein, von Willebrand factor, that helps blood clot. It can range from severe to mild in symptoms; 90 percent of people who have the disease have the mild form. VWD occurs equally in men and women, but women are more likely to notice the symptoms because they have heavy or abnormal bleeding during their menstrual periods and after childbirth.

Although VWD is the most common cause of bleeding disorders in women, there are other inherited bleeding disorders, so proper treatment requires an accurate diagnosis. CDC is working to find new ways to diagnose these conditions and provide care for women who have them. Part of this effort involves increasing awareness of these disorders among women and their doctors.

What Is a Bleeding Disorder?
Bleeding disorders occur when the blood does not clot properly. There are several possible causes: a person may have a shortage of platelets or of any of the proteins called clotting factors, or the
platelets or clotting factors may not work correctly.

Symptoms vary depending on the bleeding disorder and its severity and might include:

• menorrhagia: heavy bleeding during monthly periods
• unusually hard-to-control bleeding after minor injury, childbirth, or surgery
• excessive bleeding from the gums after flossing, brushing, or having a tooth removed
• frequent or prolonged nosebleeds
• easy bruising

While there is no cure for these disorders, once they are identified, treatment is available to control symptoms.

Undiagnosed and Misunderstood
Why do so few women know about bleeding disorders? First, women may not report their symptoms. They may not feel comfortable talking about heavy menstrual bleeding, which is, in essence, a relative and sometimes subjective term.

There are many gynecological and physical causes for menorrhagia, such as endometriosis, thyroid problems, and cancer; however, the cause is not identified in half the cases. A recent CDC-Emory University survey found that gynecologists rarely considered bleeding disorders as a cause of menorrhagia. However, recent research from Europe and CDC has shown that 15 to 20 percent of women with menorrhagia have inherited bleeding disorders. CDC and the National Hemophilia Foundation have been working to encourage gynecologists to consider bleeding disorders in women who have menorrhagia. As a result, the American College of Obstetricians and Gynecologists recently recommended screening for VWD in these women (see inset).

CDC is also developing a short screening questionnaire to help doctors decide which women with unexplained menorrhagia should be tested for a bleeding disorder. Researchers in CDC’s hematologic diseases branch are evaluating the questionnaire with gynecologists and women and hope to make it available within the next year.

Testing and Treatment
Tests for bleeding disorders are performed on a blood sample, but the testing can be complicated and should be done at a specialized laboratory by experienced coagulation specialists. Finding a laboratory with such expertise can be difficult. CDC is working to develop better laboratory tests for VWD disease and other bleeding disorders.

An effective way for women to be tested and receive treatment for bleeding disorders is through a hemophilia treatment center (HTC). CDC supports a network of 140 HTCs thoughout the United States. Although these centers traditionally served men with hemophilia, they have expanded their services to include women with bleeding disorders.

HTCs provide comprehensive care for people with bleeding disorders. A team of health-care providers offers services that include specialized laboratory testing, yearly assessments and referrals. A CDC survey of women with VWD served by HTCs found that they were very satisfied with the care they received at them. CDC continues to work with its partners to develop educational materials for women recently diagnosed with a bleeding disorder.

For more information about women and bleeding disorders, visit www.cdc.gov/ncidod/dastlr/hematology or contact CDC’s hematologic diseases branch at hdb@cdc.gov.

Bleeding Disorders: How Many Women?
Putting a number on the problem of bleeding disorders in women is not a simple matter. The most obvious symptom, abnormally heavy menstrual bleeding, is almost always described subjectively, rather than measured through actual blood lost. Even when women do complain, their internist, gynecologists or family practitioners may not think of a bleeding disorder as the cause. Testing is complicated and must be done by specialists in sophisticated laboratories.

So it’s important for women who think they might have a bleeding disorder to consider seeking a diagnosis from a hemophilia treatment center (HTC) that can perform the special testing and understands the different treatments.

• 5 to 10 percent of U.S. women complain to their doctors about heavy menstrual bleeding.
• Half of all menorrhagia cases go unexplained after other causes have been ruled out.
• 1 to 2 percent of people in the United States — which means up to 2 million women — may have mild von Willebrand disease (VWD), the most common bleeding disorder.
• About 5 percent of hysterectomies — 30,000 per year — are performed because of heavy bleeding. Some of these women probably have bleeding disorders that could have been controlled without surgery.
• Two studies in Europe and one in the United States have shown that up to 20 percent of women with menorrhagia may have an inherited bleeding disorder, most commonly VWD.

NEWS YOU CAN USE

Diabetes
Carrying the Burden
The burden of diabetes is especially heavy for women, and diagnosed cases among women have increased almost 50 percent in the past decade.

To focus national attention on the impact of the disease on women, CDC has published Diabetes and Women’s Health Across the Life Stages: A Public Health Perspective. A task force is developing a national public health action plan and planning a first-ever national conference on diabetes and women’s health.

• Diabetes is a leading cause of death among middle-aged American women.
• Women’s risk factors for the disease are higher than men’s: they are more likely to be overweight and inactive, and they more often live to be older.
• Among people with diabetes who have had heart attacks, women have lower survival rates and quality of life than men.
• American Indian women are particularly vulnerable to diabetes.
• About 4.5 million women 60 or older have diabetes. But 25 percent of them don’t know it. For a copy of the report or more information on women and diabetes, visit www.cdc.gov/diabetes or call 877-CDC-DIAB.

Move It!
Boosting Physical Activity
We know that physical inactivity is a leading cause of preventable death in the United States and that regular exercise can reduce the risk for heart disease, diabetes, obesity, some cancers, and musculoskeletal conditions.

Still, only one fourth of U.S. adults get the recommended 30 minutes of moderate exercise five days a week or 20 minutes of vigorous activity three days a week. Almost 30 percent of adults report no regular physical activity.

Here’s what communities can do to help people increase physical activity. The Task Force on Community Preventive Services reviewed interventions for effectiveness and strongly recommends:

• large-scale community-wide campaigns that include media campaigns as well as support groups, counseling, screening, education and walking trails;
• behavior-change programs tailored to individuals’ readiness for change or interests, including teaching goal-setting, building social support and relapse prevention;
• school-based physical education programs with more activity or more time in P.E.;
• social support interventions such as buddy systems or walking groups; and
• better access to walking trails and exercise facilities. Also recommended: motivational signs near elevators to encourage people to take the stairs. Read the report at www.cdc.gov/mmwr/pdf/rr/rr5018.pdf. For more on the Task Force, visit www.thecommunityguide.org.

Safe Motherhood
Finding One Voice
An expansive concept of safe motherhood, one that includes the physical and emotional health of women before, during and after pregnancy, emerged from a CDC-organized gathering in early September in Atlanta.

More than 300 attendees at the National Summit on Safe Motherhood came together from many walks: they were scientists, obstetricians and pediatricians, policy makers and program managers, professors and students, fertility specialists, childbirth educators and advocates for practices such as birthing centers, doulas, and breastfeeding. They discussed everything from depression and domestic violence to cultural barriers and the lack of data about pregnancy-related complications and health. And they left resolved to look for answers and take action to build a grassroots safe motherhood movement in the United States.

"Motherhood is a pretty universal experience that captures the imagination and brings together a lot of single-issue interests," said Wanda Jones, head of the U.S. Department of Health and Human Services Office on Women’s Health.

An expanded definition of safe motherhood could help focus research and policy to further reduce the number of maternal deaths, which stopped declining in 1982. The current ratio is 9.9 maternal deaths per 100,000 live births, but this risk is not equal for all groups of women. For example, African- American women are four times more likely to die of pregnancy-related complications than non- Hispanic white women; Native American and Hispanic and Asian immigrant women twice as likely.

"This conference is a beginning, to bring people together to say with one voice, 'This is important,'" said Lynne Wilcox, director of CDC's reproductive health program. "We must collaborate, we must take action to make our voices heard, we must call for research and investigation into the issues that affect safe motherhood, and we must design policy that supports the health of all pregnant women." For more information on safe motherhood, visit www.cdc.gov/nccdphp/drh/smh_aag.htm.

Fertility
Report Helps Women Decide
What are the chances of having a child with the help of assisted reproductive technology (ART)? Where can women go for the treatment?

Women can look to CDC’s fifth annual Assisted Reproductive Technology Success Rates report for the answers. The ART report summarizes national trends and gives success rates from 370 fertility clinics around the country to help consumers make informed decisions.

• Overall, about one in four ART cycles resulted in the birth of a baby for women who used their own eggs, a slight increase in success rate from 1998.
• Success rates decrease markedly with age after 35.
• Approximately 37 percent of all ART deliveries were of multiple infants (twins or more), compared with less than 3 percent for the general population.
• More than 30,000 babies were born as the result of assisted reproductive technology procedures carried out in 1999.

"ART holds out the promise of having a child, but it can be a long and expensive process," said Lynne Wilcox, director of CDC’s reproductive health program. "People need all the information they can get to make an informed decision."

The full report is available at www.cdc.gov/nccdphp/drh/art.htm or 770-488-5372.

Another CDC study shows ART use rapidly on the rise, raising concerns about the potential health problems of the many twins, triplets, and higher-order multiples and their mothers. More than half of ART babies are multiples. Multiple-infant pregnancies are often higher risk and the infants are more often low birth weight than single births.

Find the report at: www.cdc.gov/mmwr/preview/mmwrhtml/mm5105a2.htm.

Violence
Looking at Homicide Numbers
During the 1980s and 1990s, rates of intimate partner homicide decreased by 47 percent, researchers at CDC found in a first-ever analysis of 1991-1998 data from the Federal Bureau of Investigation. Homicides against men decreased 68 percent and against women 30 percent.

Some key findings:

• one in three women murdered is killed by a current or former spouse or boyfriend.
• The rate of intimate partner homicide increases with the population size of the community.
• Rates among blacks were 4.6 times higher than among whites.
• Among women, rates were highest among those 20 to 39 years old. The report calculates national intimate partner homicide rates for racial groups, by state, by month, by size of community, and other factors. See the report at: www.cdc.gov/mmwr/preview/mmwrhtml/ss5003a1.htm.

If You're Tanned, You're Toast
Tanned skin is damaged skin. There's no other way to say it. Any change in skin color after time outdoors - whether suntan or sunburn - means damage from the sun's UV rays. And just a few serious sunburns can increase your risk of skin cancer. One million people will get some kind of skin cancer this year. Don't be one of them. Protect the skin you're in.

Choose Your Cover
Skin Cancer: CDC's Choose Your Cover Campaign targets young people to change social norms about skin protection and tanned skin. Visit www.cdc.gov/chooseyourcover.

INTERNATIONAL

Pregnancy a Big Risk for Afghan Refugees
Pregnancy and childbirth were the leading cause of death among Afghan refugee women of reproductive age in Pakistan refugee camps, according to a CDC study published in The Lancet in February. Of the babies born to these mothers who died, 60 percent were stillborn or died early in infancy.

The study by CDC’s reproductive health program with the International Rescue Committee (IRC) says that better access to health care might have prevented the deaths of many of the Afghan mothers and babies who died in Pakistani refugee camps in 1999 and 2000.

Death rates for Afghan women were lower in the refugee settlements, showing that IRC basic health services reduce mortality. But high fertility, low literacy and limited mobility may conspire to make pregnancy and childbirth a dangerous endeavor for these women.

Recommendations include multivitamins with folate and iron, more and better-trained lay midwives, treatment of complications such as malaria, better access to obstetric and postpartum care, contraceptives for women who do not wish to become pregnant, and better surveillance for maternal deaths.

Afghanistan is the source of the largest and most long-standing refugee population in the world. The study — one of the first to document reproductive health status in refugees and the first reproductive-age mortality study in a refugee setting — aims to help fill a gap in knowledge about refugee maternal and child health.

"Given that the leading cause of death among women living in stable camps with established health care services was maternal mortality, we anticipate that the burden of maternal mortality will be even greater among new refugees, women living in Afghanistan and women returning to Afghanistan, where health care services are reported to be in seriously short supply," according to the article.

CDC SPOTLIGHT

CDC's Injury Center
Tracking and Tackling Violence Against Women
As part of its work to protect Americans from harm caused by injuries, CDC’s National Center for Injury Prevention and Control also focuses on intentional violence such as homicide, suicide, rape, and violence among youth. The injury center’s work to prevent intimate partner violence and sexual violence are of particular relevance to women’s health.

Surveillance
Developing accurate ways to monitor the problems is a big challenge, and CDC's Uniform Definitions and Recommended Data Elements for intimate partner violence, published in 2000, aims to improve and standardize the data on violence against women. Underreporting is a problem because of embarrassment, denial, or fear, and because incidents that are reported may not be recorded as intimate partner or sexual violence or make it into the medical record. Even semantics is at issue, with date rape, domestic abuse, battering, marital rape, stalking, and rape being used inconsistently to describe forms of intimate partner and sexual violence.

This under-reporting and lack of standardization mask the problem and contribute to confusion and lack of consensus. But Uniform Definitions is quickly becoming the recognized standard, and five states are now piloting tracking systems. CDC conducts an ongoing National Violence Against Women Survey with the U.S. Department of Justice. And new surveys to help states more accurately gauge the problems will guide policy and allow comparison among states.

Research
CDC supports research into causes, risk factors, consequences, and prevention strategies. For example, the injury center is working to find out what social norms support or discourage intimate partner and sexual violence and which risk factors can be changed. Then it will use that information to help communities build campaigns to make violence against women unacceptable and intolerable.

CDC is funding projects — several of them targeted for specific racial and ethnic populations — in communities across the country to tackle the problems. In just one example of these very different projects, the Austin, Texas, school district and the University of Texas are teaching children, teachers, and parents how to eliminate bullying and sexual harassment in elementary schools. Rooted in the belief that social acceptance of violence in personal relationships is a cause of domestic violence, the Expect Respect program teaches kids to expect to be treated with respect by their peers.

Intimate Partner and Sexual Violence

• One review showed that as many as 20 percent of women experience intimate partner violence during pregnancy.
• Each year more than 10 million American children witness intimate partner violence in their families.
• About half of all rapes and sexual assaults against women are committed by friends and acquaintances, and 26 percent are by intimate partners.
• Of rape victims who reported the offense to law enforcement, about 40 percent were under age 18, and 15 percent were younger than 12.
• Victims of rape often suffer long-term symptoms including chronic headaches, sleep disturbance, recurrent nausea, decreased appetite, eating disorders, sexual dysfunction, and suicide attempts. Sexual assault increases the odds of substance abuse by a factor of 2.5.

Sexual Violence Against People With Disabilities

• Of the people with disabilities who have been sexually victimized, 72 to 82 percent are female.
• Among women with disabilities, reported rates of sexual violence range from 51 to 79 percent. Most cases involve multiple episodes of sexual contact.
• Most perpetrators are male (88 to 98 percent) and are someone the victim knows.

PREVENTION WORKS

PRAMS Collects Pregnancy Data
How soon do pregnant women seek prenatal care? How do they feel about their pregnancies? How many smoke or drink alcohol? How many are counseled to breastfeed? And how might these variables relate to one another?

PRAMS — the Pregnancy Risk Assessment Monitoring System — collects such data and makes it available to states to plan and evaluate their health programs. The goal: improve the health of mothers and infants by reducing adverse outcomes such as low birth weight, infant death, and health problems for women and their babies. The data help identify groups of women and infants who are at high risk for health problems.

CDC and state health departments collect this state-specific, population- based data on what women do before, during, and just after pregnancy. PRAMS surveys ask about, for instance, unintended pregnancy, contraceptive use, tobacco and alcohol use, physical abuse, prenatal care, and HIV counseling. States work from birth certificate records to survey, by mail and telephone, women who have recently had live births.

To find out more about PRAMS, visit www.cdc.gov/nccdphp/drh/srv_prams.htm. PRAMS is funded in 32 states and New York City.

Mammograms
Following the Debate
The U.S. Department of Health and Human Services (HHS), the National Cancer Institute (NCI) and the U.S. Preventive Services Task Force (USPSTF) have reaffirmed the value of mammography for women 40 and older.

"The federal government makes a clear recommendation to women on mammography: If you are 40 or older, get screened for breast cancer with mammography every one or two years," said HHS Secretary Tommy G. Thompson at a press conference in February.

The statement followed several months of debate about the evidence that mammograms prevent deaths from breast cancer. A report last fall in The Lancet said that the trials that proved mammograms' effectiveness in preventing deaths were flawed and that the benefits may not necessarily outweigh the risks, such as biopsy surgeries after false positives. More than 250 articles have been published over the years in this ongoing debate, and most reviewers have come to the conclusion that mammography is effective.

"It is absolutely essential to look beyond the debate over the limitations of current data and to accelerate the development of better screening tools," said NCI Director Andrew von Eschenbach, M.D., in the NCI's statement in January. NCI pledged to make evaluating new data on mammography a high priority and to charge forward with research on early detection.

CDC's mission in cancer is to translate research into practical prevention and control programs and promote them widely to the public. One example is CDC’s National Breast and Cervical Cancer Early Detection Program, which provides Pap smear and mammography screening to women who could otherwise not afford it.

• USPSTF recommendations: www.ahrq.gov/clinic/3rduspstf/breastcancer/
• HHS statement: www.hhs.gov/news/press/2002pres/20020221.html
• NCI recommendations: newscenter.cancer.gov/pressreleases/
  mammstatement31jan02.html
• CDC’s early detection program: www.cdc.gov/cancer/nbccedp/

DATES THAT MATTER

First Conference of the National
Center on Birth Defects and
Developmental Disabilities
September 17-19, Atlanta
www.cdc.gov/ncbddd/conference.htm

CDC/ATSDR Women’s Health
Conference, Advancing the
Health of Women: Prevention
Practice and Policy
October 7-9, Atlanta
404-639-7230

June is National Safety Month

National Men’s Health Week
June 10-16

National Prevention of Eye Injuries
Awareness Week
June 28-July 8

National Therapeutic Recreation
Week
July 13-19

World Breastfeeding Week
August 1-7

CDC RESOURCES

We want to hear from you, so please let us know what you think.
— Yvonne Green, Director CDC/ATSDR Office of Women's Health

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This page last reviewed May 6, 2004: Historical Document
URL: http://www.cdc.gov/women/newsltr/02summ.htm

US Department of Health and Human Services
Centers for Disease Control and Prevention
Office of Women's Health