Correction: Previous versions of this article, including in the May 3 print edition, cited an incorrect statistic saying seven in 10 cervical cancer cases are caused by HPV. In fact, almost all cervical cancer is caused by HPV. Also, the cost of Pap smear was incorrectly stated as $2. In fact, it is $20-$40. This article has been updated.
In her early 20s, Tamika Felder skipped seeing her gynecologist and getting Pap smears for a few years because she couldn’t afford health insurance.
She was working part time in a job that paid only about $6 an hour, and “it was either go to the doctor’s or pay the rent,” she recalled. But her health was good, and Felder figured she’d be fine.
Except she wasn’t.
In 2001, at age 25, Felder learned that she had cervical cancer. She needed a hysterectomy, chemotherapy and radiation. And she was left unable to bear children.
“I didn’t want to lose my womb. I didn’t want to lose my fertility. But I was tossed into this world of cancer,” said Felder, now 35 and a television producer living in Upper Marlboro. “It changes you in such a profound way. You have to rebuild your whole life.”
Each year, about 12,000 U.S. women receive diagnoses of cervical cancer and 4,000 women die of the disease. Yet doctors view cervical cancer as a disease that can easily be prevented and treated. Precancerous lesions and early cancer are easily detected through Pap smears; lesions can be removed in a minimally invasive procedure before they turn into cancer. And since 2006 there has been a vaccine against human papillomavirus, or HPV, the sexually transmitted virus that causes most cases of cervical cancer.
But Felder’s case is a good example of why this disease remains a threat. Too often, doctors and public-health experts say, women who don’t get regular screenings — because they don’t have health insurance or for other reasons — discover the problem when the disease has already progressed.
“In most cases, women who get cervical cancer in this country are those who did not get a Pap smear,” said Robert Hilgers, a gynecologic oncologist in Kentucky, one of the states with the highest incidence of cervical cancer. (The District also has a relatively high rate.) “I have been here — in all aspects of this disease — having cared for over 1,000 women with cancer of the cervix, and don’t want to see another woman die of this disease.”
Hilgers and other doctors say cervical cancer is highly correlated with poverty and a lack of health insurance. The Centers for Disease Control and Prevention cites disproportionate levels of cervical cancer among the uninsured and underinsured.
For instance, in the Appalachian region of Kentucky, where the poverty rate was 24.5 percent in 2005-2009 — compared with the national rate of 13.5 percent — women get cervical cancer at a rate that is one-third higher than the national rate, and they die at a rate that is 37 percent higher, according to statistics from the Kentucky cancer registry and the National Cancer Institute.
Hilgers and others say they believe income disparity, and the resulting disparity in access to health insurance and health care, contribute to an elevated death rate from cervical cancer in African American women. According to statistics from the National Cancer Institute, African American women died of cervical cancer at a rate of 4.4 per 100,000 vs. 2.2 per 100,000 for white women.
“Socioeconomic factors that people live under affect their health,” said Hilgers, founder of the Kentucky Cervical Cancer Coalition.
Shobha Krishnan, a gynecologist in New York who is the president of the Global Initiative Against HPV and Cervical Cancer, says one way to reduce cervical cancer rates would be to bring help, screening and education to vulnerable women instead of waiting for them to seek it out. “There are uninsured and underinsured who lack access to care. There are people living in rural areas without access to care. . . . If we can adapt what we do in the developing world [where health-care workers visit homes to provide information and treatment] we might make more progress. Four thousand deaths is 4,000 too many.”
Cervical cancer used to be a much bigger scourge in America. Before Pap screening began in the 1940s, about 26,000 women died each year of the disease. But the American Cancer Society promoted the screening, and rates fell steadily as physicians began to routinely perform it. The test involves a quick, painless scraping off of cells from the cervix, which are then examined in a lab for abnormalities.
Not only did fewer women die when the test became widely used, but fewer got the disease because doctors found and then could deal with the changing cells before they turned into cancer. In 1973, the incidence rate was 14.2 per 100,000; by 2003-2007 it had fallen to 8.1 per 100,000.
The American College of Obstetricians and Gynecologists recommends that women get their first screening at age 21 and that most women younger than 30 get screened every two years. After age 30, if a woman has had three negative tests in a row she should be screened only every three years. And many doctors believe that by age 65 to 70, most women can stop getting Pap smears altogether if they have a history of normal ones. (Some doctors disagree with this and say checkups are still needed in this age group.)
Almost all cervical cancer is caused by HPV, according to the CDC. Roughly half of all sexually active people get HPV at some point in their lives, but the body’s immune system clears the virus in most people. For those who do develop cancer, it’s typically slow-growing and easily detectable by Pap smears before it becomes extremely dangerous.
According to the CDC, in 2008 about 83 percent of American women 18 and older with insurance had gotten a Pap smear within the previous three years; for uninsured women, the figure was 67 percent. The Agency for Healthcare Research and Quality says that about half of women with newly diagnosed cervical cancer had not received a Pap test in the previous five years.
A. Bennett Jenson, a University of Louisville physician who has researched cervical cancer for decades and helped invent the HPV vaccine, said even though the disease spreads slowly, he believes it’s important to get yearly Pap smears. The tests have a 30 percent false-negative rate, he said, so frequent tests increase the likelihood that any abnormality will be detected. He said young women should also protect themselves by getting vaccinated against HPV before becoming sexually active.
He also suggested that women get a separate test for HPV along with their Pap smear; a positive HPV tests means a woman has the virus on her cervix and should be monitored more closely by her doctor. The American Cancer Society says this option is best for women 30 or older, since HPV is so common among younger women and the body usually fights it off.
Pap smears are generally covered by health insurance, and many plans also cover the HPV tests and vaccine. But those without insurance face high costs — about $360 for the vaccine (plus administrative costs, which can raise that figure to $400 or more), about $20-$40 for a Pap smear (plus the charge for the office visit) and $80 to more than $100 for an HPV test.
However, there are programs that can help women struggling with the costs, including the CDC’s National Breast and Cervical Cancer Early Detection Program, which screens low-income women who are uninsured or underinsured.
Still, some people fall through the cracks. And sometimes, just a few years without screening can spell trouble.
Tamika Felder got Pap smears regularly when she was attending college and was still covered by her mother’s health insurance. But when she outgrew that insurance, Felder skipped screenings for three years. She wasn’t too worried when she began having bad menstrual cramps and lower back pain. After landing a full-time job with insurance, she went in for a checkup and got a Pap smear. She could hardly believe the cancer diagnosis and sought several other opinions.
“I was thinking I was in some bad movie,” she said.
Felder said three things would have made a difference for her: being better educated about cervical cancer and its causes, having insurance and not acting as if she were invincible health-wise.
Hilgers said these factors affect many patients. But experts say changing attitudes, getting health messages out to everyone, and improving access to health care are some of the thorniest challenges in medicine.
Krishnan, the New York gynecologist, said she hopes for improvements because the new health-care law should mean fewer uninsured women. “We hope that . . . providing coverage for millions more will reduce the number of cervical cancer cases in this country,” she said.
Hilgers said bringing down the numbers will take a while. “I think we’ve hit a wall in terms of making progress in Pap smears,” he said. “Now, we have to wait for the impact of the [HPV] vaccine. . . . If you immunize today, you’re not going to get a reportable outcome for 10 to 20 years.”
Felder, meanwhile, is doing her part. In 2005, she started a nonprofit group, Tamika & Friends, which seeks to draw attention to cervical cancer and its link to HPV. On May 14 it is sponsoring an awareness walk at RFK Stadium.
“I don’t know if we’ll ever eliminate it completely. But I think we can lower it,” Felder said. “This is a preventable cancer.”
Ungar is the medical writer for the Courier-Journal in Louisville.