You’ve probably heard this before: Black people don’t trust the medical system.
During the early pandemic, public health agencies hustled to address this barrier when the need to reach Black citizens became a priority. Memories of the Tuskegee Syphilis Experiment became public conversation as some Black folks expressed concern about the COVID-19 vaccine.
Many eventually opted-in to the vaccine after targeted campaigns and reassurance from medical officials.
That fight may be over, but the medical system’s legacy of mistreatment continues to impact Black people in another way — reproductively.
Black women lead in cervical cancer rates, being 41% more likely to develop the disease than white women and 75% more likely to die from it.
While an early screening may protect a woman from developing the disease — which often starts as HPV (human papillomavirus), a common sexually transmitted infection, and progresses into cervical cancer over time — Black women face various barriers to preventative care; including a lack of transportation, insurance, and sexual education.
For some, however, another obstacle may come as a surprise: medical mistrust.
To get a better understanding of how providers are working to dissolve medical mistrust and get Black women access to the care needed to end the cervical cancer crisis, we sat down with Kara James — a nurse practitioner at Planned Parenthood Los Angeles who led the creation of its Black Health Initiative.
WORD IN BLACK: As a provider who works directly with Black women, what do you feel is causing high cervical cancer rates?
KARA JAMES: Systemic racism continues to affect literally every single aspect of our lives, so that creates the disparities — like patients who have a lack of insurance or healthcare affordability, patients who lack comprehensive sexual health education.
As Black folks, your mama might have said, “OK, just don’t have sex.” That doesn’t help us get the care that we need or to have the information that we need. And then schools are not created equal, so sexual health education is not the same as in some more affluent areas.
And then the historic mistreatment of minorities at the hands of medical professionals that continues to create gaps in access to information and also fuels misinformation, fear, and stigma.
WIB: How have you seen fear prevent Black women from receiving a pap smear or engaging with the medical system as a whole?
KJ: I had a patient recently that came into the clinic who was almost 40-years-old, and she had never had a pap smear — never had any type of exam. And I had to really quiet her fears because she was fearful of the healthcare institution.
We have good reason not to trust, but the fear, it can be generational. Grandma didn’t trust the doctor, so now the aunties didn’t trust the doctor. Your mama doesn’t trust the doctor, now you don’t trust the doctor. So that generational fear continues to affect our patients.
WIB: So, what needs to happen for there to be trust between the Black community and the medical system?
KJ: As a Black provider, I think it makes a huge difference if we see someone who looks like us because it kind of puts down your fears. I can trust you because you look like me, or at least I hope I can trust you because you have had some similar experiences.
And I have had some of the same experiences. I have been mistreated. I’ve had some stuff to go on in my own life: talking to a doctor, a provider, and I wasn’t treated fairly. And so, I think that makes a huge difference if we see providers that look like us.
Planned Parenthood, as you know, we have this amazing Black Health Initiative. The Black Health Initiative started in 2022, in a sense, in response to the murders of George Floyd and Breonna Taylor. It was a historical moment, so we needed to step up and stand out and make a commitment to the Black community. And we did make that commitment.
When you walk into our Inglewood clinic, you see Black folks on a wall. You see the mural, the pictures, you see Black folks. We have a behavioral healthcare therapist inside the clinic. So, it’s addressing our needs on multiple levels. For instance, the Black health therapist inside the clinic, having Black clinicians there, treating our whole patient, not just looking at individuals in their specific health needs, because all of the outside stuff plays a huge part into what their health is.
WIB: It’s been a couple of years since you all launched the Black Health Initiative. What are some things that you all have been able to accomplish? And what are some goals you have moving forward?
KJ: We have a community center. That’s huge. We partner with grassroots organizations, organizations that are a part of the community. Partnering with different organizations makes a huge difference. We have these conversations every month called Soul Friends, and this is an uncut conversation for young Black folks over the age of 18.
Having that is very important. Just being able to cut through any garbage or any apprehension, allowing people to come from where they are and provide resources, or having these conversations, giving us space to talk.
And the Black Health Initiative is actually now a nationwide initiative. It’s not just at Planned Parenthood Los Angeles.
WIB: Let’s circle back to cervical cancer. Can you talk about early screening? When should a woman visit a doctor for her first pap smear?
KJ: I want to start with the HPV vaccine. Young girls should be vaccinated against HPV. That actually prevents cervical cancer. Then at 21-years-old, women should get their first pap smear and hopefully they come in before they start having sex, because the HPV — which causes the majority of cervical cancer — is transmitted sexually.
So, if they come in prior to having sex, it helps to screen them and that kind of eliminates the HPV aspect of cervical cancer. Women should have regular pap smears up until 60-years-old, starting at 21. Well, depending on the result of your pap smear, that’s what determines the next steps. If you need to come in the year or generally, it’s every three years. Once you hit 30, it’s every five years. But if there is a change in your cells, you may need to come in early.
That’s another thing that causes an issue. If a person has an irregular pap smear, they don’t necessarily realize that they need to be followed closely. And so that’s something that I also see. Patients would come in, they had a pap smear that was abnormal, and it’d be seven years, and they just continued to allow the cervical changes and didn’t realize how important it was for them to follow up with whatever the treatment or whatever the next process was for them.
WIB: Please give us the rundown. What does proper follow-up for a pap smear look like?
KJ: It depends on what the result of the pap smear was. So, if the screening is “abnormal,” it would just be going back to the provider. Maybe the provider says you need to come in every 12 months for two years to get another screening for another pap test. That might be the follow-up that’s necessary.
It may be a colposcopy, which is a biopsy, that may be necessary. It depends on what the result was for the pap smear.
Another thing is we get afraid when we hear abnormal, but a lot of times you’re re-papping because HPV often goes away on its own. And so you’re just checking to make sure everything is OK, if there are changes, is it abnormal or is it something that’s just going to go back to a regular, healthy cervix.
WIB: Can we go a little deeper for a moment? Black women experience sexual assault at concerning rates. Considering the level of vulnerability that’s required to undergo a pap smear, do you think that some women’s history of assault could be hindering them from getting screened for cervical cancer?
KJ: That’s a good question. So, definitely, sexual abuse will make you hesitant because you don’t want the vaginal exam or you’re concerned about the vaginal exam. I mean, that by itself can be invasive. And so, I think that we — at Planned Parenthood — do a phenomenal job of helping patients feel comfortable.
That’s the experience that I have and that I see, and I think that makes a huge difference — being able to talk to our patients and provide them the care that helps to reduce their fears. It helps them to understand that there’s no judgment. And that’s something I also tell my patients there: it’s no judgment. Whatever your story is, there’s no judgment. And so it allows patients to feel safe and secure in the care that we provide.
WIB: Overall, what are some of the misconceptions that people carry when they think about reproductive health?
KJ: We often only think about abortion access or abortion care. And reproductive health is the first conversation that we should have with our children when we’re ready — making sure our people have the knowledge and information that they need. We often live in areas where you don’t have contraceptives…But that is also part of reproductive care.
WIB: What do you think a healthy conversation about reproductive health would look like between a mother and child?
KJ: Not saying “tata” or “tete.” You know, not giving these soft names for our sexual organs because I think it takes away the power that we have.
A vagina is a vagina. A penis is a penis. Breasts are breasts, but being able to have these real conversations because the kids have these conversations in the school.
We need to teach our kids about condoms and birth control and being comfortable with themselves, being OK with not having to hug people. If somebody makes you feel uncomfortable, you don’t have to proceed.
WIB: Is there anything else you’d like to share regarding reproductive health?
KJ: I know we touched on this a little bit, but look at racism and discrimination in the healthcare field and gynecological care that we know is rooted in abuse and exploitation of Black folks — especially Black women.
WIB: That’s a really good point to mention. It’s like when we walk into these environments, sometimes we walk in carrying the weight of that trauma that our ancestors experienced.
KJ: That continues to affect us on a generational level. So, slavery and white supremacy created the laws, practices, and values that determined the reproductive rights of women in the United States, and that continues to affect us.
The fact that Black women rebelled against their role as a reproducer — they had abortions way, way back then. Black midwives created the infusions, concoctions, and techniques for them not to have kids. Or reproductive resistance by enslaved Black women just shows it’s a power, for example, of reproductive freedom.
That’s something that should be defended. They did so much 500 years ago, but that still continues to affect us.
WIB: What would you say to a young woman who’s seeking to let go of generational fear and is choosing to reapproach the medical system?
KJ: Get the information that you need for yourself because if you’re educated about your needs yourself, then it helps decrease the fear that you would have.
And then I always say to take a notebook so you can write down questions that you may have to make sure you can go back to your questions that you have…or finding a program that helps you get more educated about your own needs, about your own health, that helps empower you as well.