What Steps Can Patients Take to Combat Cervical Cancer Disparities?

Cervical cancer disparities persist, but how can patients help improve disparities? Expert Dr. Shannon MacLaughlan from University of Illinois discusses the value of patient advocacy, elevating patient voices, and proactive patient advice for self-care. 

[ACT]IVATION TIP

“…focus on yourself. I take care of women almost exclusively, and they’re the mamas and the sisters and the daughters, and they’re the caregivers, and they are focusing on everyone else. And now it’s time to focus on yourself and get yourself through this and then circle back, and we’ll start taking care of everybody else together.”

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How Does Insurance Status Impact Cervical Cancer Diagnosis?

How Does Insurance Status Impact Cervical Cancer Diagnosis?


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, what are the next steps in addressing the disparities you’ve identified in cervical cancer diagnosis and management, and how can patients be involved in this process?

Shannon MacLaughlan:

The most important thing that a patient can do is take care of themselves and get through your treatment successfully. You are a survivor of that cancer the moment you hear the word cancer. The moment you get that diagnosis, you are a survivor, and you focus on that. Try not to isolate yourself, because this is a team, it’s a team sport. Your medical team should have a team, and you should have a team.

Then, when you are feeling healthy, and when you are energized, I need you to spread the word. The most impactful way a patient can contribute to breaking down barriers is to start from the inside, to share your story, to talk about it. Advocacy can be as simple as going home and talking to your family about the kind of cancer that you have, how it started, what they can do to prevent it, what they can do to prevent it in their kids. Just start there, and then when we get you healthy again, then it’s time to elevate your voice.

I feel strongly that when we see disparities in outcomes related to cancer, it is the fault of the system, and it’s a little too easy and maybe not realistic to tell a patient to advocate for yourself with your doctor, because you might not have a choice in your doctors, and that’s just easier said than done. The system has to take ownership. We have to take ownership, and we have to learn from you.

And so those of us trying to break down these inequities and introduce some justice, particularly in the world of cervical cancer, we aim to elevate the voices of the people with the lived experiences and the communities who are experiencing it, because most often patients come to my office and they say, even though this was a thing, I didn’t even know we had our own ribbon. I hand out ribbons to patients with cervical cancer because they’re survivors. I need them to talk about it.

I need them to talk about it in their communities so that they know it’s a thing, and they hold us accountable. So my action item is, one, focus on yourself. I take care of women almost exclusively, and they’re the mamas and the sisters and the daughters, and they’re the caregivers, and they are focusing on everyone else. And now it’s time to focus on yourself and get yourself through this and then circle back, and we’ll start taking care of everybody else together.


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Why Does Access to Care Matter in Cervical Cancer Treatment?

What is the role of socioeconomic status in advanced cervical cancer treatment? Expert Dr. Shannon MacLaughlan from University of Illinois discusses impacts of socioeconomic status and psychosocial determinants of health on cervical cancer care, the importance of clinical trials, and proactive patient advice to optimize care.

[ACT]IVATION TIP

“…no matter what your experience may be, when you go to a doctor or other provider with cervical cancer, whatever that experience is, I want you to know that one, you are not alone. You are not the only person experiencing this. It is not your fault. You are not to blame for this. And so whatever you may feel or experience in the clinical encounter or the encounter with the academic centers or the cancer center or the front desk or in radiology, whatever you experience, know that you are a survivor, know that you are strong and resilient, and please do not feel shame.”

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How Does Insurance Status Impact Cervical Cancer Diagnosis?

How Does Insurance Status Impact Cervical Cancer Diagnosis?


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, how does socioeconomic status impact treatment and outcomes in advanced stage cervical cancer?

Shannon MacLaughlan:

So, first of all, I’ll say that cervical cancer is as largely a preventable cancer, and socioeconomic status and other psychosocial determinants of health are usually contributing to an individual’s ability or access to get preventative care. And so our patients who are presenting with advanced disease, or even most patients who were diagnosed with cervical cancer have not had adequate screening. And so socioeconomic status and other social determinants of health really play a role in whether or not the cancer can be prevented to begin with.

The best cure is to never let it happen. Now, when it comes to outcomes in advanced stage, there are two things that I would point out. Number one, we do have some qualitative research, not my work, but some really important work that demonstrates that when reviewing a medical record, you’re much more likely to identify negative language coming from a provider as a descriptor for a patient. If the patient is from a vulnerable community or from a lower socioeconomic status or is not white.

And that doesn’t necessarily mean your provider is saying bad things about you. What it’s saying is, this is my least favorite, but I still see it, this unfortunate patient. Another example would be, this patient is noncompliant. And the word noncompliant, what a provider should mean by that is that that person is not able to do everything we ask of them. Well, that could be because we are asking too much and not listening to them for what their goals are and what they needed. So an alternative of describing that would be, these are the things that the patient can do as opposed to emphasizing what we’re telling them to do that they’re not doing.

All of that is evidence of implicit bias, and implicit bias and systemic racism are things that are really hard to undo unless you go back to the beginning. And in this case, that means research. So when it comes to outcomes in treatment for advanced cervical cancer, I have to point out that though we have had some exciting advances in treatment of recurrent and metastatic cervical cancer, I have to point out that there are very few patients of color on those clinical trials. Most of them are done in Europe or in predominantly white-privileged communities in the United States.

And that has to do with ease of participation in clinical trials, because it’s hard enough to get yourself through cancer treatment. We are extremely demanding of our patients and survivors. And then you add to that a clinical trial protocol, it’s even harder. There are more visits, there’s more. And so those coming from marginalized, underrepresented communities aren’t represented in the research being done to find cures.

So that means we may find something that we think works. We don’t know if it’s going to work in a patient who has no one similar to them who participated in the treatment before. And so until we can really be inclusive in the clinical trial research, and even not just clinical trial research, but all kinds of research, meaning learning more about tumors that grow in particular communities and what’s going on in community levels or at the community level with extrinsic sources of stress or exposures or pollution or health outcomes or food insecurity, all of those things are going to play a role in someone’s health. And the healthiest people are most successful at surviving cancer treatment, let alone the cancer itself.

My [ACT]IVATION tip for this is no matter what your experience may be, when you go to a doctor or other provider with cervical cancer, whatever that experience is, I want you to know that one, you are not alone. You are not the only person experiencing this. It is not your fault. You are not to blame for this. And so whatever you may feel or experience in the clinical encounter or the encounter with the academic centers or the cancer center or the front desk or in radiology, whatever you experience, know that you are a survivor, know that you are strong and resilient, and please do not feel shame.


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How Does Insurance Status Impact Cervical Cancer Diagnosis?

 Health insurance status has some clear impacts on cervical cancer stage at diagnosis. Expert Dr. Shannon MacLaughlan from University of Illinois discusses key points from her cervical cancer research findings.

 

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Advancements in Cervical Cancer Treatment: Targeted Therapies and Immunotherapy

What Steps Can Patients Take to Combat Cervical Cancer Disparities?

What Steps Can Patients Take to Combat Cervical Cancer Disparities?


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, how does your research highlight the role of health insurance status in influencing the stage at which cervical cancer is diagnosed among different racial and ethnic groups?

Shannon MacLaughlan:

Well, we found that patients who have private insurance or Medicare are much more likely for their cervical cancer to be diagnosed in an early stage than an advanced stage. We already knew going into this particular work on the SEER database, we already knew that there were some inequities that broke out by race and ethnicity, such that Black patients, Hispanic patients, and Native American and Alaska Native patients were more likely to present with an advanced stage cervical cancer than their non-Hispanic white counterparts. And it turns out that having insurance can mitigate that discrepancy.

Now, that research is really designed to teach a system that we have to do better. That research is hard to package into something for a particular person to do differently in their life. It’s easy to say, “Go get insurance.” But we all know that in real life, it is not that easy. So what’s really going on here is that screening programs are effective in populations who are getting screened, and insurance is a marker of someone who has access to primary care and preventive care and the ability to focus on health at all. 


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Does Cervical Cancer Care Differ Between Academic and Non-Academic Centers?

What are key points about advanced cervical cancer treatment in academic versus non-academic settings? Expert Dr. Shannon MacLaughlan from University of Illinois discusses patient care at academic versus non-academic cancer centers, multidisciplinary care, support services, clinical trials, and the importance of second opinions. 

[ACT]IVATION TIP

“…there’s always a role for a second opinion, and insurance providers are mandated to provide coverage for a second opinion. And that can be an important door for you to open to make sure that your case is reviewed at one of those academic centers.”

 

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Advancements in Cervical Cancer Treatment: Targeted Therapies and Immunotherapy


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, what role do academic centers play in the treatment of cervical cancer? And how might patients at these centers receive different care compared to those at non-academic centers?

Shannon MacLaughlan:

An academic cancer center, or a cancer center that has been designated as a comprehensive cancer center, or a National Cancer Institute cancer center, is going to have a certain, they’re required to provide multidisciplinary care that meets the highest standard of care. So an academic center or an NCI-designated center will, by definition, have the internal quality metrics, ensuring that they are doing the right thing, which you shouldn’t have to guess whether or not your team is doing the right thing.

But one of the biggest contributors to cervical cancer existing is and/or recurring and women dying from it is that we don’t always do the right thing. So, an academic center, number one is going to provide for you a multidisciplinary team. You need to make sure that that team includes a gynecologic oncologist.

You may need a radiation oncologist. The best multidisciplinary care of the patient with cervical cancer also includes a palliative care team that can manage pain control and other symptom management effectively. And these centers are required to screen patients for other needs than just treating the cancer. So if you go to an oncologist, wherever we are, we are going to be experts in the cancer and how to treat it.

And hopefully, we are keeping up with the latest and greatest and most effective treatment options. And if you go to a cancer center that has NCI designation or is an academic center, then that should come with it…the understanding that taking care of a patient with cancer is more than just killing the tumor.

It’s about taking care of the patient and taking care of that patient’s family and taking care of that patient and their family in the context of their community. We see often in patients with cervical cancer, the need for transportation services, for social work support, not only to cope with the diagnosis, but to cope and navigate with the treatment that we lay out for you and how to plug it into your life and deal with the financial toxicities that come along with it. And those academic centers are going to be equipped with the teams who can connect you with smoking cessation and assist with food security and other things that contribute to your wellness.

The other important thing about academic centers is access to clinical trials. And in the world of cancer care, access to clinical trials is a marker of quality and better outcomes for patients. We are also starting to see, now that we’re looking for it, we’re starting to see that we can, oftentimes we see survival outcomes diverge based on things that it shouldn’t. Diverges for Black women, not as effective as white women.

We can close those gaps when patients participate in clinical trials. It doesn’t necessarily mean that a clinical trial is available to a particular individual and that they may not be eligible for anything in that moment, but access to those clinical trials is a critical big picture for successful treatment of cervical cancer or any kind of cancer.

And then finally, I would say that academic centers have the mandate of educating the next generation of providers, and we need to do better. So, for several years, I ran a clinic specifically for patients with cervical cancer. And just doing that, spending a day seeing patients, only patients, dealing with cervical cancer, was such an important learning opportunity for the residents and the medical students because I hate to tell you, but we are often taught in medical school that cervical cancer isn’t a problem anymore and that we cured it with successful screening.

But we didn’t. We haven’t actually made any headway meaningful in incidence of cervical cancer in a couple decades. So, it is important that we educate our next generation of providers that cervical cancer is, in fact, a problem. The treatment that we provide for cervical cancer is in and of itself very tasking and somewhat traumatic thing for a patient to experience. And providers need to learn how to provide culturally-accessible, empathic care for patients coming to the table with this particular kind of cancer.

So, that’s more of an ask than a recommendation. I ask you to go to an academic center so that you can teach the next generation. That’s really important to me. Now, my [ACT]IVATION tip for this topic is that you always have an opportunity for a second opinion.

Why does that matter? It matters because not everyone has access to an academic center for cervical cancer or any kind of cancer. You might not live near an academic center. You may not, even if you do live near one, you might not be able to get into one. But there’s always a role for a second opinion, and insurance providers are mandated to provide coverage for a second opinion. And that can be an important door for you to open to make sure that your case is reviewed at one of those academic centers.

Lisa Hatfield:

Okay, thank you. And I’m also a big advocate for getting an expert opinion, somebody who just sees those types of cancers. So, do you recommend if a patient is diagnosed with cervical cancer, they are not near an academic center, would you recommend that they do that at the time of diagnosis to try to seek out a second opinion or a consult at least once right at diagnosis? Is that the best time for that, do you think?

Shannon MacLaughlan:

Absolutely. The most effective time for a second opinion is before you start treatment. Once you initiate a treatment, there are very few certain…because you’ve started it, it’s almost always the best thing to continue doing it. Even if it’s not what I would have recommended to you to begin with. If you’ve already initiated it, you’re committed. So it’s tricky when you have a new diagnosis. It can be anxiety-provoking to have to wait for a second opinion or wait to get in for one or wait to start your treatment. But if at all possible, that’s the most effective time.

I would also add that many centers offer community doctors access to their tumor boards. I hate the term tumor board, but because it’s universal, I can’t change it. A tumor board is a multidisciplinary conference in which providers of each subtype gather and review cases. And so many academic and comprehensive cancer centers will offer that service to community physicians so that you may, if you can’t physically get to an academic center for a second opinion, then you may be able to have your case reviewed. There could be a telehealth option. Sometimes that’s an option when crossing state lines is necessary. And then finally, if all else fails, getting a second opinion on the pathology can be helpful.


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Disparities in Cervical Cancer Treatment: The Role of Poverty and Systemic Barriers

Cervical cancer treatment disparities exist, but what role do poverty and systemic barriers play? Expert Dr. Shannon MacLaughlan from University of Illinois discusses the impact of poverty and systemic barriers and proactive patient advice for improving your care and reducing cervical cancer disparities. 

[ACT]IVATION TIP

“…for someone who is diagnosed for the first time, bring someone with you, bring someone with you, every time you see any kind of provider, when at all possible, because the health care system has not been designed for you, obviously, because we failed you. Bringing someone with you helps you close that gap.”

 

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How Does the Stage of Cervical Cancer Impact Treatment and Prognosis?

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How Does Cervical Cancer Differ From Other Gynecological Cancers?

Understanding Metastatic and Recurrent Cervical Cancer: Diagnosis, Staging, and Surveillance

Understanding Metastatic and Recurrent Cervical Cancer: Diagnosis, Staging, and Surveillance


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, what are the noted disparities you’ve observed in the treatment of cervical cancer among different demographic groups?

Shannon MacLaughlan:

This is a tough question to answer, not because I don’t know the answer, but because the answer requires taking ownership of the problem as a provider. Cervical cancer is preventable, because we have a very effective vaccine against the HPV virus, and because we have tools to screen for cervical cancer, including Pap smears, including HPV testing, and when patients are diagnosed with cervical cancer, it means the system failed them. It means that everything we think we’re doing to prevent something bad from happening to a person, we are not doing effectively.

And so when I think about a preventable cancer and who gets it, it’s the people who fall through the cracks. And the people who fall through the cracks are the people who are coming from vulnerable communities, where perhaps their biggest existential threat is not whether or not they get a Pap smear, but whether or not they can put food on the table, or whether or not they have a roof over their heads, or whether or not they can keep their children safe. So disparities and inequities tend to align with poverty and systemic racism and implicit biases and just flat-out marginalization.

So that the demographics that are experiencing the highest mortality, and experiencing the highest incidence of cervical cancer are women of color, Native American and Alaska Native patients, patients of Hispanic backgrounds, and immigrants. So my action tip for this, for someone who is diagnosed for the first time, bring someone with you, bring someone with you, every time you see any kind of provider, when at all possible, because the health care system has not been designed for you, obviously, because we failed you. Bringing someone with you helps you close that gap.

For our Hispanic patients, a huge barrier is a language barrier, and we’re required, if we don’t speak the language, we’re required to provide interpreters in the context of the clinic visit, but the clinic visit is actually only a very small part of a treatment journey. The moment you have to navigate getting to the campus of a medical center, you have to navigate the medical center itself. You may have to ask for directions. You’re going to have appointments with a gynecologic oncologist or radiation oncologist, nuclear medicine, radiology, an infusion unit. Come with another set of eyes and ears. It’s a great idea to bring your own interpreter, if you can.


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