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"Mine is a cautionary tale," says Kauthar Keister of Mobile, Alabama. "I was 32, preparing for my wedding and hoping for three babies, when I learned I had invasive cervical cancer."

The news took sometime to sink in. Keister needed a total hysterectomy and she was about to get married.

"Of course, some of the dreams shattered right there," remembers Keister. But my now husband went right along with the wedding. As he put it, there are many black children in need of a loving home."

Keister is now 38 and has two adopted children, a girl and a boy. She knows what she did wrong: she lagged in prevention, skipped the yearly pap smears and was convinced she had nothing to worry about, because she had no history of cancer in her family.

But cervical cancer is not hereditary.

A cancer caused by a virus

The two-decade quest for the underlying causes of cervical cancer could be considered a scientific success stories, culminating last June in the Food and Drug Administration approval of the vaccine Gardasil, which protects against infection from the two types of Human Papilloma Virus (HPV) that cause the majority of cervical cancers worldwide.

Population studies helped to establish the link between HPV infections and the disease, revealing that while most HPV infections clear and do not lead to cancer, virtually all cases of cervical cancer were caused by HPV infection.

National Cancer Institute (NCI) scientists Douglas Lowy, M.D., and John Schiller, Ph.D., pioneers in HPV research, then examined ways to boost the body's immune response to prevent the cancer-causing infection. This work led to the development of the technology on which the HPV vaccine is based.

Cervical cancer and minorities

In November, the Virginia Governor's Task Force on Cervical Cancer issued an 82-page report of a study spanning 1998 to 2002, which pinpointed poor and minority women as having a higher risk of dying from cervical cancer. Although the task force recommended expanding treatment from the 40 and older group to females as young as 18, it found that minority groups in Virginia were hit the hardest when it comes to this type of cancer.

During that four-year time frame, nearly 8 out of 100,000 women were diagnosed with cervical cancer in Virginia, an issue that concerns lawmakers, since minority groups surpassed the state average.

Women in Southwestern Virginia who were categorized as Hispanic, Asian American and American Indian had the highest rate with 27 diagnoses per 100,000 women.

In other regions, African-American women had the highest death rates with about 9.8 deaths per 100,000 women. The study showed that with this group, the rates of diagnoses continued to rise in women 20 to 85, unlike their white counterparts in which the rate peaked and then fell.

The averages are not unique to the state, but mimic numbers nationwide.

In 2002, about 12,000 women were diagnosed with cervical cancer. About 1,900 were African-Americans, 450 Asian American/Pacific Islanders, 60 American Indian/Alaska Natives and 1,800 Hispanics. However about 4,000 women died of cervical cancer in 2002 with 800 being classified as African American, 120 as Asian Pacific Islander, 120 as American Indian/Alaska Native and 380 as Hispanic.

Although mortality rates have decreased overall, cervical cancer remains the second highest killer of women in cancer-related deaths. According to the Centers for Disease Control and Prevention, the government spends more than $2 billion annually on cervical cancer treatments alone.

HPV, what's to know?

HPV is transmitted by skin-to-skin contact in men and women, making it difficult for condoms to be effective in preventing transmission between partners.

Of the 30-some viruses classified as HP – about 100 different strains – two have been linked with 70 percent of cervical cancer cases, while two others have been found responsible for 90 percent of genital warts cases. In rare cases the virus is also known to cause anal and penile cancers.

Carriers may not know they have the virus for some time because genital warts may not develop for years, if at all. Although the virus may go away on its own, the CDC recommends that women get their annual pap tests if they are 21 and older or sexually active.

This advice is strongly promoted for minority groups who are experiencing higher death rates due to cervical cancer.

The prevention efforts focus on education and information about the vaccine Gardasil, which prevents infection from the virus when administered in a series of three shots to females ages 9 to 26.

Outreach to Asian immigrants

Spreading news of the vaccination has taken second place to solid education on risk factors and encouragement to be tested for the organization, Boat People SOS. A Vietnamese organization started in 1980 and headquartered in Falls Church, Va., Boat People SOS will work to serve the Vietnamese refugees and immigrants nationally.

As the Outreach Coordinator for Northern Virginia, Hang Duong takes a step-by-step approach to educating clients. Although facts regarding HPV and the new vaccination have been featured on the group's monthly radio talk show, Duong says that can be one of the hardest messages for listeners to accept because parents "don't want to talk about teens having sex. They talk about their children being too young to know."

In addition to the radio program, which often features physicians, Duong said a monthly newspaper allows the organization to broach the subjects of cancers by first talking about common health topics like eating and nutrition.

However, Duong said it is not always easy to convince women of the importance of testing.

"They don't want to find out before they get sick," she said.

Fear isn't the only factor that deters women from getting tested.

"Sometimes the money is the issue for women," she said. "We share the cost and that makes it easier. Sometimes it's hard to pay even $25. They feel okay. They don't feel sick, so why are they going to pay $25 for nothing?"

Women may also have problems writing and speaking English or be concerned that positive test results may mean they become a burden to people they are already relying on for help.

Duong said she has found that age plays a factor in a women's willingness to heed health-related messages.

"If the women grew up here, it's easier to talk with them," she said. "If they have just come here, we have to work harder, but the younger women are more open minded."

Being open to get tested is a test in itself

Beth Ehrensberger, public education manager of the Virginia Breast and Cervical Cancer Early Detection Program has noticed similar trends, in particular with the women they serve from minority groups.

"They don't want to burden families," she said. "They want to take care of their families."

Women see themselves as the trunk of the family tree, she said.

"A lot of times they don't think they can take time away from parents or grandchildren; they make decisions based on family," Ehrensberger said. "But I noticed you can get to their hearts by saying, 'I want you to be there for your family and be healthy.'"

Ehrensberger said she has seen fear and faith impact women's decisions to get tested.

"A lot of women do things based on faith and it works both ways. Some women say 'I won't go get a breast or cervical screening because if it's my time to go, then it's my time to go,'" she said. "Others say 'God put me on this earth for a purpose and He's given me sense enough to go get some help. I'm going to get screened.'"

Also known as the Every Woman's Life, the program began in 1996, is funded by the CDC and is available to women who are 40 to 64-years old, meet federal income guidelines and are either underinsured or uninsured. Through the program, women are able to receive pap smears regularly. Once women have been tested, their results dictate their next step. If women need to seek further medical attention, they are referred to one of the enrolled providers located nearest to them.

"We see them from the beginning to end, which is good because, we just don't want to find out they have cancer and then wish them good luck," Ehrensberger said.

During the 2005 to 2006 grant year, Every Woman's Life screened about 6,000 women. Of the 6,000 clients, 35 percent were African-American, 0.5 percent was American Indian, 3.2 percent were Asian and 4 percent were classified as Hispanic.

In July, early diagnosis was extended to the 18 to 39-year-old age group.

In the future, Ehrensberger said she is hoping to increase the number of providers to meet current needs and reach out to more minority communities. Plans are also underway to implement a New Day guide program, which was pilot tested during the 2005 to 2006 grant year. The goal is to promote healthy lifestyles because the majority of the women enrolled in Every Woman's Life would not benefit from a vaccine because of their age group.

"I'd love for some type of vaccine to come along and dismantle our programs and make us obsolete," Ehrensberger said. "But we'll continue to provide services until that happens."

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Fia Curley is a writer for the OMHRC. Comments? Email: fcurley@omhrc.gov

Links

Access issues
www.omhrc.gov/templates/content.aspx?ID=1378

Vaccine
www.omhrc.gov/templates/content.aspx?ID=4362

Statistics
www.omhrc.gov/templates/content.aspx?ID=2909

Centers for Disease Control and Prevention HPV Facts
www.cdc.gov/std/HPV/STDFact-HPV.htm
www.cdc.gov/std/HPV/default.htm

Every Woman's Life program
www.vahealth.org/breastcancer/

Boat People SOS
www.bpsos.org/health