STEVE INSKEEP, HOST:
January is Cervical Cancer Awareness Month. This disease is highly treatable and preventable, but many women die from it. And a disproportionate number are Black.
Here's NPR's Alana Wise.
ALANA WISE, BYLINE: Kimberly Williams was a 42-year-old mother of two when she received her diagnosis.
KIMBERLY WILLIAMS: My doctor called and said that he wanted to see me in his office. So I was very nervous. And when I went in, he said, kiddo, you have cancer; but we're going to fight it. So the feeling I had was being very overwhelmed.
WISE: Williams had had an abnormal pap smear in her 20s. But she said her doctors never talked to her about the human papillomavirus, HPV, or about her risk of developing cancer from it.
WILLIAMS: No one ever said, hey, this is something that you need to be checking. My story may have been different had I known about HPV.
WISE: An estimated 4,290 people in the United States died from cervical cancer last year. A disproportionate number of those deaths were among Black women. A joint study this month from the Human Rights Watch and the Southern Rural Black Women's Initiative focused on cases in rural Georgia.
KAY EADY: The further away that you live from metropolitan centers, the rates of cervical cancer increase. And that's the case that we found in southwest Georgia.
WISE: That was Dr. Kay Eady. She's a community-based researcher for the Southern Rural Black Women's Initiative. The study found that Black women in Georgia were about 1 1/2 times as likely to die from cervical cancer than white women. Black women are also less likely to have ever been screened for the disease. And while the five-year survival rate for cervical cancer is about 92%, that number is five points lower for Black women.
EADY: At the state level, we really need to work on expanding Medicaid. That would mean more programs for the women. In terms of transportation, it would give us more resources for the doctors - also, that these counties, these rural communities, could maintain and attract health care professionals.
WISE: Annerieke Daniel is a researcher in the women's rights division at the Human Rights Watch. Another big barrier to Black women's health care is the historical mistreatment of minorities by medical professionals.
ANNERIEKE DANIEL: We spoke with many women who just felt like their concerns were dismissed, the level of care that they've received was inadequate and that they were just treated with complete bias.
WISE: Another issue is a lack of information about the dangers of HPV. The virus is the most commonly contracted STI in the United States. And strains of the virus are responsible for more than 95% of cervical cancer cases.
It was Tamika Felder's own cervical cancer diagnosis at age 25 that prompted her to start the group Cervivor. That's Cervivor, spelled like cervix.
TAMIKA FELDER: When I was going through my cancer diagnosis, there weren't people that looked like me who were telling their stories.
WISE: Now the organization has more than 100 trained ambassadors and thousands more who count themselves among the survivors.
That includes Cemonia Hall, the group's ambassador to Georgia. She throws a luncheons and gives out teal goodie bags, the color of cervical cancer awareness. Because of her own diagnosis, Hall says it's important to be an active participant in your own health care.
CEMONIA HALL: They may be the doctors, but they don't know your body the way that you do. So I think it's very important to use your voice 'cause that is your power.
WISE: Hall, like everyone interviewed for this story, stressed the importance of getting routine pap smears and following up on your results.
Alana Wise, NPR News, Washington.
(SOUNDBITE OF YONDERLING'S "WHISPER") Transcript provided by NPR, Copyright NPR.