More than 300,000 women around the world die from cervical cancer each year. In the U.S., women of Haitian descent are diagnosed with it at higher rates than the general population.
The disease is preventable, though, thanks to vaccines and effective treatments for conditions that can precede the cancer. That's why health care workers and even the World Health Organization are focusing on Miami's Little Haiti to try to save lives.
The rate of cervical cancer in Little Haiti is 38 per 100,000 people — more than four times Florida's overall rate of 8 per 100,000, according to a study published in Cancer Causes and Control in July 2018.
One of the authors, Erin Kobetz, the associate director for population sciences and cancer disparity at the University of Miami's Sylvester Comprehensive Cancer Center, came up with the idea of bringing HPV testing to areas of Miami-Dade County where women are less likely to get regular screenings for cervical cancer at a gynecologist's office. Human papillomavirus is thought to be responsible for about 50% of cervical cancers.
Kobetz's work and that of her colleagues, using a recreational vehicle dubbed the Game Changer, grabbed the attention of the WHO. The international health organization announced a lofty goal in August 2020: Eliminate cervical cancer by encouraging countries to get 90% of girls fully vaccinated with the HPV vaccine by age 15; have 70% of women screened for HPV by age 35 and again by age 45; and treat 90% of women who have pre-cancerous conditions. The WHO believes cervical cancer can be eliminated within the next century if countries meet those targets by 2030.
'Center for Haitian Studies' brings health care to the people
In Miami, the WHO is relying in large part on public health infrastructure already in place, including the effort initiated by Kobetz. In Little Haiti, this work is happening at a medical clinic called the Center for Haitian Studies, located on a commercial street in the rapidly gentrifying immigrant neighborhood.
On the outside of the building, "CHS-Health" is written in big blue letters. A few small convenience stores and a tax service business are nearby, but most surrounding shops are clothing boutiques and hip cafes or restaurants.
On a weekday morning, the clinic's street-facing windows filled the waiting area with sunlight, and community health worker Valentine Cesar struck up friendly conversations in Haitian Creole with patients as they waited.
The patients have an easy rapport with Cesar, who works for the University of Miami's Sylvester center. At the Center for Haitian Studies, she teaches people about preventing cervical cancer by focusing on HPV. Specifically, Cesar shows women how to test themselves using a kit she hands out at the clinic. "We have a little jar, and this is a cotton swab," she said.
'The fact that you're HPV-positive doesn't mean you have cancer'
The process isn't much different from using a tampon and is certainly easier than getting a pelvic exam, which is the other way to test for HPV. Self-collected samples are sent to a lab. If the results are positive, Cesar deploys her considerable people skills as she delivers the news.
She acknowledged the panic that comes when she tells people they have HPV. "We explain to them that the fact that you're HPV-positive, that doesn't mean that you have cancer," she said.
It does mean that a woman needs to be vigilant about her health, though, and needs to be monitored for cancer, pre-cancerous conditions, and other problems that can be caused by HPV. Cesar and her colleagues will encourage HPV-positive patients to get care at the Center for Haitian Studies or other federally qualified health centers. The clinic is the Sylvester center's primary referral partner in Little Haiti because of the cultural and linguistic competence of the staff.
The Sylvester center's Game Changer vehicle supports the Little Haiti clinic's education efforts and parks behind it on scheduled days. On other days, the vehicle brings a similar message to different communities in Miami.
"We're able to promote our services through our various community health workers that go out and talk about what we do, hand out flyers and have educational materials," said Dinah Trevil, the former director of the Sylvester center's Office of Outreach and Engagement. "All of that helps us to bring about knowledge and awareness about our services and what we do."
On a tour of the Game Changer vehicle, Trevil pointed out the video on HPV that was playing and pamphlets that people can use to learn about the virus. The vehicle has a main area with space for sitting, as well as areas for private exams or consultations.
Culturally competent staffers help dispel fear
Trevil understands why Haitian women sometimes avoid seeing a doctor. As she explains it, "They have the belief, 'If I'm going to the physician's, I'm going to find out some bad news. I would rather not go.' "
As health educators, Trevil and Cesar try to talk people out of this avoidance motivated by fear.
Research shows the self-tests for HPV can help more women accept other tests that benefit their reproductive health, Trevil said. "So we started to use this test as a way to address some of the sensitivities and some of the reluctance in women to actually have a Pap test done."
Patient Nicole Daceus took a self-test for HPV this year after noticing the Game Changer vehicle and the Sylvester center's name on it. Health fears are not the only hurdle, Daceus said, noting that "people avoid the doctor if they don't have health insurance or their immigration papers."
No one at the clinic will ask patients about their immigration status, though — that's something Cesar and Trevil try to make sure patients know.
How to reach the next generation
Staffers from the Sylvester center explain the issues to mothers, as they encourage them to get their young teenagers vaccinated against HPV. The vaccines for children are given inside another RV, parked a few feet from the Game Changer — the University of Miami's pediatric mobile clinic. It focuses on care for uninsured children and sets up near public schools, houses of worship and community centers.
"We work in tandem with one another because the mobile clinic is able to provide vaccines, and this way we can make HPV prevention a family affair," Kobetz said. "Age-eligible boys and girls can get vaccinated."
Richard Freeman, who works in the WHO's office of the director-general, visited the vehicles behind the Center for Haitian Studies earlier this year. Freeman said this team's work is vital to the WHO's global effort to end cervical cancer. No one, Freeman added, should die from a disease that tests and vaccines can prevent.
"Cervical cancer is the one cancer that we can actually eliminate," Freeman said. "We have the tools, and all it is a choice of whether or not we're going to put those tools into use. If we catch this cancer early and we detect it on time, it's curable. And so we want to see all of these interventions coming — not just here in Miami. We want to see the supply of HPV vaccines also made available and also affordable in countries that have a higher burden of cervical cancer."
This article is from a reporting partnership that includes NPR, WLRN and KHN.