HPV and Cervical Cancer Screening in the LGBTQ+ Community: Addressing Unique Challenges and Concerns

00:00:00:00 – 00:00:30:05
Unknown
Hello and welcome to today’s webinar HPV and Cervical Cancer Screening and the LGBTQ+ community: addressing unique challenges and concerns. I’m Aisha McClellan, the cervical cancer coordinator at SHARE. Before the presentation begins, I’d like to tell you a little bit about SHARE. SHARE is a national nonprofit that supports, educates and empowers anyone diagnosed with breast or gynecologic cancer and provides outreach to the general public about signs and symptoms because no one should have to face breast, ovarian, uterine, cervical or metastatic breast cancer alone.

00:00:30:07 – 00:00:37:13
Unknown
For more information about our upcoming webinars and support groups and helplines, please visit our website at sharecancersupport.org.

00:00:37:13 – 00:00:44:21
Unknown
We are very excited to have Dr. Gwendolyn joining us today as our speaker. And now I’d like to hand it over to Dr. Plant to introduce herself.

00:00:45:07 – 00:00:55:10
Unknown
Hello, everyone. I’m Dr. Gwendolyn Quinn. I’m at the NYU Grossman School of Medicine and I’m a research psychologist and bioethicist.

00:00:55:10 – 00:01:15:06
Unknown
Okay. Well, hello, everyone. I’m going to talk today about cervical cancer screening and HPV. So this probably goes without saying. I’m sure many of you are very familiar with this terminology, but I think that it’s important to make sure we’re all talking about the same thing. What is sexual orientation?

00:01:15:06 – 00:01:52:19
Unknown
What is gender identity and what is gender expression? So typically a person who identifies with the sex that they were assigned at birth is considered CIS. And you may often hear people referred to as a MAB assigned male at birth or a fab assigned female at birth. But people who do not identify with the sex that they were assigned at birth could have any number of identities from transgender to non-binary to two separate depending upon their racial and ethnic background.

00:01:52:21 – 00:02:28:09
Unknown
This is our representation of how we view ourselves. And then sexual orientation typically refers to our attraction to others. So here we use the term gay, lesbian, or someone who has no sexual attraction to others may identify as asexual. And again, depending upon your racial and ethnic background, you may also use the term to spirit. So it really is important for everyone who has a cervix, regardless of how you identify your gender, to get it checked.

00:02:28:11 – 00:03:03:16
Unknown
So there are some guidelines from the United States Preventive Task Force, and typically they recommend that Pap smears and HPV testing do not begin until your age 21, even if you are sexually active earlier than that. They don’t recommend that you get a PAP test or an HPV test until your age 21. And then it is recommended that between 21 and 29 you do this every three years unless you have an abnormal screening.

00:03:03:18 – 00:03:34:12
Unknown
And then once you reach the age of 30 to 65, it’s recommended that you have an HPV test every five years. HPV and PAP every five years. And then a pap test every three years. And this used to be a yearly recommendation, but about three years ago, three or four years ago, it changed to every three years. And of course, these may vary depending upon your family history or your own personal medical history, and you may receive different recommendations.

00:03:34:14 – 00:04:09:07
Unknown
So I’m often asked how what’s the relationship between HPV and cervical cancer? HPV is accounts for 90% of all cervical cancer. HPV is also attributed to other cancers like anal head and neck, penile, vaginal vulvar cancer. But in the original clinical trial that was testing the HPV vaccine, they did not test for the likelihood of development of cancer of those other cancers.

00:04:09:09 – 00:04:42:17
Unknown
So they can’t make those claims that the HPV vaccine may be preventative in those other cancers, but it is thought to be and is often recommended for people who have developed an HPV related cancer and one of those other body sites besides the cervix. So you’ve probably heard that it’s recommended that these vaccines happen in childhood. Both males and females are recommended to start the vaccine at around age 11 or 12.

00:04:42:19 – 00:05:14:11
Unknown
It can be started as early as nine, and this is recommended to happen up through age 26. After the age of 26, the HPV vaccine is not recommended for everyone, but there are some groups of people who are aged 27 to 45 for whom it may be recommended. This may be particularly for men who have sex with men, people with a compromised immune system from an autoimmune disorder who didn’t get vaccinated as a child.

00:05:14:13 – 00:05:54:04
Unknown
And even some people who have developed had a neck and anal cancer already is recommended that they have this vaccine. So this is really a decision that should be made between you and health care clinician based on your personal and family history. So HPV is a virus. It is transmitted through skin to skin and sexual contact. If you do develop cancer in your HPV, your cancers, HPV related, you have a slightly better prognosis than the 10% of people who will develop cervical cancer where it’s not HPV related.

00:05:54:06 – 00:06:21:00
Unknown
It is treated differently when it is HPV related, whether it’s in the cervix or the anus or wherever the cancer may be. So coupled with the need to have these screenings, we know that there are disparities in the LGBTQ plus community. So there’s overall health disparities from mental health to physical health, not to now only in the context of cancer.

00:06:21:02 – 00:06:53:22
Unknown
And these occur for a variety of reasons. There’s lack of knowledge and misinformation on both the part of patients and clinicians. We know that. So the term for LGBTQ people and the National Institute of Health is sexual and gender minorities. And we know that sexual and gender minorities are less likely to have access to health care, less likely to have health insurance, but more importantly, have already probably experienced discrimination in the health care system.

00:06:53:22 – 00:07:24:00
Unknown
Or they fear this discrimination and stigma in the health care system that may make them less likely to seek care. So some of the reasons that people don’t get screening or don’t access services, we can see here in this graph that we know that LGBT people have avoided stores and restaurants, they have avoided public transportation, and they’ve avoided getting services that they need for either themselves or their family.

00:07:24:00 – 00:07:48:22
Unknown
Can see on this graph, which I see, it’s a little blurry here, that transgender people are the most likely to avoid all of these situations because of fear of discrimination. But since none of us are just our sexual orientation or gender identity or our race or ethnicity, we have a lot of components that make up who we are, and we refer to this as intersectionality.

00:07:48:24 – 00:08:21:19
Unknown
And people who identify as LGBT, but who also have a disability have an even greater fear of discrimination or had previously experienced stigma in the health care system, which is likely preventing them from getting screened. So just going to talk about some of the misinformation and you’ll see that this reflects both ends of the spectrum, both individual people who identify as LGBTQ Plus, as well as the clinicians who treat them.

00:08:21:21 – 00:08:46:18
Unknown
And you won’t see that until I show you some specific quotes, the research study that we did. So some of the things that we hear are women who are in lesbian or same sex relationships don’t feel that they need PAP or HPV testing because they only have sex with other women. One thing I forgot to specify is that many of us have been exposed to HPV throughout our lifetime.

00:08:46:20 – 00:09:17:11
Unknown
Typically, it clears within six months. So if you do have an HPV test and it comes positive, the recommendation will be for you to do nothing, providing that there’s no other abnormalities with your cervix. And come back again and get tested in six months. Most of the time, our exposure to HPV is cleared. It’s in those cases, what it doesn’t clear and it persists beyond six months that we worry about it being oncogenic or that is cancer causing.

00:09:17:13 – 00:09:52:22
Unknown
Even the HPV vaccine is only it is structured to address the most, most persistent or prevalent oncogenic variants, but not all of them. So that even if you’re have received the vaccine and the proper number of doses of the vaccine, you still should be checked because one of those others may have snuck in or your body might not be clearing the HPV vaccine the way it should.

00:09:52:24 – 00:10:22:10
Unknown
So some people who are in heterosexual relationships or bisexual or pansexual relationships think that because they always use a condom, they don’t need to be screened. People who have only had one sex partner in their lifetime think that they don’t need to be screened. And even though we’d like to hope that our partners are always honest with us, regardless if this is your first and only experience, you don’t know what your partner, the number of experience says and exposure they may have had.

00:10:22:12 – 00:10:47:14
Unknown
People in monogamous relationships still need to be tested. You don’t know what either of you had prior to coming into the relationship. HPV vaccine, as I said, typically clears, but in some people it can linger dormant for 15 to 20 years. So even if you’ve been in a long term relationship and you suddenly test positive for HPV does not mean that your partner was not faithful.

00:10:47:16 – 00:11:09:03
Unknown
It could mean that, but it doesn’t always mean that. Some people think just because they’ve had a pap test that they don’t need HPV testing when in fact the recommendations are to have those two tests together every three, five years, depending upon your age. Again, people who are vaccinated when they’re younger still need this. And then many people think, well, cancer doesn’t run in our family.

00:11:09:03 – 00:11:31:21
Unknown
I don’t need to worry about that. And this is not necessarily a misinformation. That is probably a definite fact. A lot of people don’t like going to the doctor, especially to have this intimate type of exam. So we know that in general, the people who are most likely up to date with their cervical cancer screenings are white, cisgender, heterosexual women.

00:11:31:23 – 00:12:05:14
Unknown
So when we talk about the intersectionality of race and ethnicity or sexual orientation and gender identity, we see less and less these groups of people being up to date with their screening. And so I in my lab were really interested in this because cervical cancer screening isn’t just about the prevention of cancer, but it’s also related to your goals for building your family, for fertility, and for the quality of your sexual health and your sexual experiences.

00:12:05:16 – 00:12:40:03
Unknown
And we know that there are significant disparities that go beyond screening with people who identify as sexual and gender minorities not getting appropriate information from their health care team about fertility, fertility decline, preservation methods, and the way that any type of cervical abnormality or presence of HPV can impact your fertility. If you’re interested in having biological children and they’re less likely to get fertility referral care.

00:12:40:05 – 00:13:10:06
Unknown
So we conducted a study, we a national study, and we recruited through student groups in colleges and various social media groups specifically devoted to sexual and gender minorities. We had a total of 72 people across these focus groups. Most of them were not white. Many identified as transgender, non-binary, and many identified as lesbian, gay, bisexual, pansexual or queer.

00:13:10:08 – 00:13:37:14
Unknown
Queer was the most used term in this group for both sexual orientation and gender identity. And so we coded these transcripts to look at some key themes. So the main themes that we found from these Zoom interviews that we did were a significant lack of cancer screening, mostly because of fear of stigma, stigma or discrimination. Clinicians knowledge. And you’ll see this in some of the quotes.

00:13:37:14 – 00:14:08:06
Unknown
This is what I was referring to earlier. The misperceptions and the lack of knowledge occurs on the part of the health care team to lack of good information about fertility and contraception, and then some other things that I won’t show quotes for but I think are important to consider that many people who identify as LGBTQ I a plus are very leery of this concept of false flagging of people or health care clinics or hospitals and institutions having rainbow flags, saying that they’re friendly.

00:14:08:08 – 00:14:36:20
Unknown
But then when they get in there, it’s not a very welcoming environment, which further contributes to the sense of stigma and discrimination that people fear. So specifically with regard to cancer screening, there was either a personal lack of knowledge or there was conflict in the family. We saw a person who identified as non-binary and queer saying, I know I have a cervix, but it scares me to think about getting it checked.

00:14:36:20 – 00:15:02:00
Unknown
And this is a person who is hoping to transition. And so they said, hopefully I won’t have it for long. Another person said, I don’t think clinicians realize the trauma some of us have experienced, like sexual assault. It’s more likely to happen. And the medical community is not sensitive to that. Another said the doctor at the university clinic told her she didn’t need screening because she only had sex with women.

00:15:02:02 – 00:15:30:00
Unknown
Another person said their parents wouldn’t let them get the HPV vaccine when they lived at home, so they had to wait until they went to college to get it. And another person still said that they learned from their community, from others like them, that toys, that sexual toys needed to be sterilized because they also carried HPV. And this was something no health care person had ever told them about, despite the fact that they were open about their sexual orientation.

00:15:30:02 – 00:15:58:18
Unknown
Still, we saw other experiences of stigma and discrimination, people saying a transgender person saying it’s hard to go to the doctor for anything. I feel afraid, unwelcome, and look down on. Someone else mentioned that their mother was experiencing breast cancer and as they were accompanying their mother to visits, they asked the doctor if, even though they were only 20, should they start breast exams earlier because of this family history?

00:15:58:20 – 00:16:17:23
Unknown
And the physician’s response was, you’re the gay daughter, right? Well, you won’t have children, so your risk is already increased. Still, another person had an abnormal pap and when they learned of what their treatment would be, they asked if it would hurt their chances of having children. And the clinician responded, I thought you said you were a lesbian.

00:16:17:24 – 00:16:45:07
Unknown
How do you plan on having kids? And we know that two men, two women, even a single person, can have a genetic child if that’s what they want. But they certainly need information from their health care team about how to go about this and the appropriate referrals if it’s something that they’re interested in. So I don’t think this video is going to play with sound because it wouldn’t let me check the box for sound.

00:16:45:09 – 00:17:27:13
Unknown
I’ll try it and maybe someone can give me a heads up if the sound is playing, I’ll do a Dr. Quinn. No sound okay, then I’m going to stop and hopefully you’ll have access to this PowerPoint and you can play it on yourself. But is it sustainable for you? Yes. If you can. Okay. I stop sharing. Yes, please.

00:17:27:15 – 00:17:36:07
Unknown
It’s giving me the same issue. Okay. I’ll just talk through it. It’s not allowing.

00:17:36:09 – 00:17:44:05
Unknown
Okay. No sound. Sorry. Okay.

00:17:44:07 – 00:18:05:12
Unknown
So it’s important to find a clinician that you trust. If you don’t have any clinicians that you feel comfortable with, ask for recommendations. I’m going to show you some references. Find out what’s right for you. And many times it’s often never too late to get vaccinated. Although depending upon your age and your medical history, insurance might not cover it.

00:18:05:14 – 00:18:28:09
Unknown
But sometimes you can go to a public health department and at least get the vaccine at a reduced cost. Bring a friend or a partner with you if that will help calm your nerves. Very recently, the idea of self sampling was approved. It was not approved to be done at home as it has been in other countries, but it was approved to be done within a clinician’s office.

00:18:28:11 – 00:18:59:16
Unknown
And this video that I was unable to show you just gives you a brief demonstration of how the self sampling works, if it would make you feel more comfortable to do your own. It’s basically a swab that’s inserted with a line that shows you how far into the vagina it should go. And you can do that in the privacy of a dressing room within a clinician’s office.

00:18:59:18 – 00:19:26:15
Unknown
So the main takeaway is that I hope that you got from this is that HPV vaccine can help prevent cervical cancer. The getting a routine PAP test and HPV testing can also help identify cancer early. As with anything, the earlier the cancer is identified, the better your chances are. Find out what vaccine might be right for you based on your age and your health status.

00:19:26:17 – 00:20:03:19
Unknown
And regardless of how you feel about your gender identity, if you have a cervix, get it checked. And here are some resources to some friendly ways to friendly organizations to get good recommendations for a clinician in your area. Fenway Health, The Human Rights Campaign, American Association of Medical Colleges, Glamor and the National LGBT Cancer Network. I’m happy to take any questions and please don’t feel that anything is stupid or irrelevant or not appropriate.

00:20:03:21 – 00:20:23:19
Unknown
Thank you so much, Dr. Quinn, for this comprehensive presentation. We really appreciate it. Let’s get started with the Q&A. There were a lot of questions, but you can still submit questions in the Q&A section at the bottom of your screen. We will try to get through as many as we can.

00:20:23:21 – 00:20:54:22
Unknown
Okay. First question is, the only way is the only way one can be positive for HPV is through sexual intercourse? No. It also can come from skin to skin contact. So literally just laying on top of another person or the exchange of bodily fluids doesn’t have to be through penile about genital intercourse. Also through anal intercourse and as discussed, through sexual toys.

00:20:54:24 – 00:21:35:09
Unknown
Okay. How do HPV, as cervical cancer risks differ among LGBTQ individuals? So all humans have the same risk based on contact. But in general and again, I know this is a sweeping generalization, LGBTQ plus people may have are thought to have more partners, may not be in monogamous relationships, may be in polyamorous relationships, which may be a monogamous, monogamous relationship, but with more than one person in their pod.

00:21:35:11 – 00:22:04:01
Unknown
So that’s what. But also fear. Fear of going to the doctor, the inability to find a clinician who is culturally sensitive, culturally humble to the situation. All of those increased risk. There also is increased risk because, again, these are generalized data. Each LGBTQ plus people are more likely to smoke, which increases cancer risk. More likely to use substances, which increases cancer risk.

00:22:04:02 – 00:22:43:00
Unknown
So all of those things combined do place people at greater risk. What are common challenges LGBTQ people face when trying to get screened for cervical cancer and how can they overcome them? I think finding a recommended clinic or clinician many college campuses. So I knew of one in particular where you learned through your peers that if you called the health clinic and you asked to speak to Dr. Smith, there actually was no Dr. Smith there.

00:22:43:02 – 00:23:14:21
Unknown
But that was a cue to the scheduler to know that you were looking for an LGBTQ plus provider. Some of the resources that I listed on there can also link you, and there’s also many social media sites, folks is one of them queer? Falwell X, where people can go online and get recommendations from their person. And again, if you can bring a friend and you can share with your doctor, I am scared to death to have this exam today.

00:23:14:23 – 00:23:42:08
Unknown
And maybe a good clinician will say, you know what, we don’t need to do it today. Let’s talk. Tell me what symptoms you’re having and we’ll do it at your next visit when maybe you feel a little bit more comfortable with me. Great advice. Why is it important for health care providers to use inclusive practices when discussing cervical cancer screening with LGBTQ plus patients?

00:23:42:10 – 00:24:03:14
Unknown
I think it’s always important because the clinician needs to know who about you in order to tailor their information in ways that make sense to you. If you’re a lesbian woman and your provider’s lecturing you on your partner wearing a condom, you’re probably going to tune out because you’re thinking, I don’t have sex with people who would need a condom.

00:24:03:16 – 00:24:36:04
Unknown
You can put condoms on sex toys. I often find you’ll find people talk about dental dams. That’s something that many queer women will say. Nobody ever uses anything like that. So your patients are going to tune you out if you’re not talking their language. So it’s also important to find out, even though you may identify as a lesbian and you may primarily only have sex with women, you may say, but, you know, occasionally I do have sex with a man, so I need to tell that information for both of those circumstances.

00:24:36:06 – 00:25:01:20
Unknown
I need to be able to tell you about me in ways where your eyebrows don’t go up and your mouth doesn’t drop open and you’re prepared to respond to what I’m saying without judgment. Well, I have anal cancer related to HPV in remission, and I’m 68 years old and wants to know if I’m qualified to get the HPV vaccine.

00:25:01:22 – 00:25:37:12
Unknown
So that is something that you should discuss with your either your cancer care oncologist team or your survivorship care team or your internist or your general medicine. Sometimes it is recommended for people, like I said, regardless of age, based on your circumstances, it’s a very individual decision based on your whole health history. What do you think is next in this area for research to improve cervical cancer experiences for trans and gender diverse folks?

00:25:37:14 – 00:26:09:19
Unknown
I think a lot of what we need to do is encourage the SEER sites. So these are the large epidemiological registries of people with cancer, and right now they don’t collect sexual orientation and gender identity. So we have no real way of saying what the incidence and prevalence is of cancer other than these kind of retrofit fitted ways that we make this assumption of 7% of the population identifies is this and they might be 7% of the cancers.

00:26:09:21 – 00:26:42:16
Unknown
So we need national registries to collect these data because without having very clear incidence and prevalence information, we can’t guide the research that needs to happen. We know that there’s all sorts of problems. Politically, it might not be safe to disclose these identities in some states or some areas that we live. So not only do we need to be able to collect it to provide you of individualized care, but we need it to help to understand the community as a whole.

00:26:42:18 – 00:27:26:21
Unknown
And we need to absolutely make sure that those identities that are disclosed are always anonymous and safe and can never be turned over for any reason in a way that might identify you as an individual. Say, I guess that’s probably are a couple more. How can we address the issue of false wagging? I think it’s it’s really important and it probably is going to happen, by the way that it’s happening now, which is through social media, which is through you rating your doctor rating, your care experience or press Ganey satisfaction scores.

00:27:26:23 – 00:27:56:13
Unknown
I’ve heard, sadly, far too many stories of people saying they were referred to Dr. So-and-so because he or she were supposed to be a friendly person. They’re a gay man themselves, but that doesn’t mean they have experience with transgender people. Sometimes a scheduler will have sent a patient to a person who’s supposed to be culturally competent, and the physician has said, I’m not sure why they sent you to me.

00:27:56:13 – 00:28:21:13
Unknown
I don’t know why I don’t treat those people. So there’s a disconnect and a lot of places. So it’s going to take these bad reviews and negative comments. One good thing to look for is whether or not a clinician or a hospital has and has the human rights certification, which means a number of people within that hospital setting.

00:28:21:15 – 00:28:49:24
Unknown
But primarily this is something that academic hospitals do and not necessarily community hospitals. So just because a hospital doesn’t have it doesn’t mean they haven’t been trained. They just don’t have the opportunity. I see. I see great answers. Thank thank you so much, Dr. Quinn, for such an informative program. And to all of you for participating and answering asking questions, please make sure to check out shares upcoming educational programs and support groups and follow us on social media.

00:28:49:24 – 00:28:57:13
Unknown
This concludes the webinar. Thank you so, so much.