20 – Improving Cancer Screening in the LGBTQ+ Community
May 7, 2024

Jon Rendina and Dwight Venson of Whitman-Walker, a healthcare center historically focused on the LGBTQ+ community, join us to delve into how LGBTQ+ people and people of color face disparities in cancer incidence. Whitman-Walker, Cancer Support Community, and GRAIL are collaborating on INCLUDE, a study to evaluate multi-cancer early detection (MCED) testing’s impact within federally qualified health centers. The goal: make this kind of cancer screening available to more people in the future. Jon and Dwight discuss barriers to access, how LGTBQ+ and minority experiences of cancer care can be different, and how MCED testing may play a role in helping underserved groups.


Kim 00:08
Welcome to The Cancer SIGNAL, a podcast presented by GRAIL where we discuss the impact of early cancer detection, the science behind multi-cancer early detection, and insight into how this approach has the potential to shift the cancer paradigm. I’m your host, Kim Thiboldeaux. We are seeking our listeners’ feedback on this podcast. Please click the link to our brief survey in the show notes and let us know what you’d like to hear on upcoming episodes. Thank you.

We know that there are many disparities in cancer incidence and outcomes. Black people in the US face the highest cancer mortality rates of any population. And people from communities of color face higher rates of late stage diagnosis. Recent studies have also shown an elevated rate of cancer diagnosis for members of the LGBTQ community. To discuss this we’re joined by two representatives from Whitman Walker – Jon Rendina, Senior Director of Research, and Dwight Venson, Community Engagement Manager. Welcome to the show Jon and Dwight.

Dwight 01:05
Thank you so much for having us.

Kim 01:08
Excellent. Great. Dwight, I’m going to start with you. Let’s start with some basics. What is the mission of Whitman Walker? I’d love to hear about the work being done in the Washington DC area where you’re located, who your organization is serving. Could you share with our listeners an overview of the services you provide?

Dwight 01:25
Yeah, thank you for that. So Whitman Walker is truly a special place. We are historically an LGBTQ plus and HIV health care center that has recently transitioned its model to primary care. So that essentially helps us offer a wider range of services from public benefits assistance, legal, dental, gender affirming services, and so much more. And so we really want the community to experience culturally competent care. And I think that’s the most important aspect of our services. You can get all those wraparound services, while also meeting with providers and a fantastic team that really knows you identifies you with you, and can connect with you on that level.

Kim 02:13
Terrific. And we’re going to dig in a little bit more on some of those services, Dwight. For our listeners, Whitman Walker is an FQHC – a federally qualified health center. What does that distinction mean? How is Whitman Walker different from other healthcare centers? And do you have some background Dwight, how many FQHCs are there in the US? How many are, people are being served through these centers?

Dwight 02:24
Yeah. So for us being an FQHC. That essentially means that at the community based organization level, we receive federal funding to work with specific demographics. And so that looks like us working with LGBTQ plus communities, or folks living with HIV, that helps us offer a higher standard of care, but then also at a sliding fee scale, which allows for folks that might have an inability to pay to connect with our public benefits folks, or to receive services where they may have not been able to receive them in the past. And across the US, if I’m not mistaken, there are about 15,000 federally qualified healthcare centers, which allows for about 3 million individuals to receive services through those organizations. I might not have those numbers exactly right. But the point is that that’s a lot of folks receiving a high quality of care, and we’re really excited to be a part of that.

Kim 03:38
Yeah, wonderful. Yeah, I know there are so many of these kinds of health centers across the country providing really, really critical care. Thank you for that background Dwight. Jon, I want to talk about the work you’re doing with CSC and GRAIL. Let me give a little background for our listeners. Cancer Support Community is a global nonprofit that works to ease the burdens of cancer and eliminate barriers to care through individual and community support, education and advocacy. I will share a small note on that I was the CEO of Cancer Support Community for 20 years. And on another note, I actually worked at Whitman Walker many, many years ago. So this episode has a particularly meaningful place in my heart today. So I’m glad we’re having this discussion about both of these great organizations. But Jon, last year, Whitman Walker announced a research collaboration with the Cancer Support Community and GRAIL. Can you tell us about the work that you’re doing together?

Jon 04:30
Yeah, absolutely. So shortly after I started at Whitman Walker back in 2020, I got introduced to some folks from both CSC and GRAIL. And that was actually one of the first studies that I started working on fresh at Whitman Walker. And the idea was pretty simple. The new Galleri test has really strong promise to promote early cancer detection. And so we wanted to make sure that the communities that we’re serving have access to this test. And so it is being implemented primarily in large healthcare settings that have the ability to coordinate care from primary care into cancer related care, where federally qualified health centers don’t have that opportunity, we are particularly focused on primary care. And so we partnered with CSC and with GRAIL to design a study where we could make this test freely available to the communities that we serve, and provide CSC’s amazing cancer navigation program as a wraparound service to support those who do receive a positive signal on the Galleri test as part of the study. That allows us both to ensure that they have the navigation that they need to get into the cancer diagnosis and treatment that they require. And also to study the impact of that so that it could potentially become a program that could support the national implementation of testing programs, using multiple-cancer early detection within federally qualified health centers that can’t do the cancer related care themselves.

Kim 06:18
Really, really interesting, especially with what Dwight shared about how many people are being seen and being provided primary care through these FQHCs. Jon, why did Whitman Walker think it was important to focus on cancer screening?

Jon 06:32
We are very excited to be expanding our focus to areas of health that we have not traditionally focused on and in particularly areas of health that are of most importance and impact to the communities that we serve. And cancer is absolutely one of those incredibly large, impactful health conditions. And we are also working to increase our cancer related screening and care within the health center. But that does not currently include multi-cancer early detection. That includes traditional cancer screening that focuses typically on a single type of cancer. And so we were really excited to have the opportunity to be able to pilot the use of this test with communities that otherwise wouldn’t be able to access it. It’s not covered by most carriers. And often, folks that we’re serving don’t have insurance to begin with. And so the opportunity to get this test out there, and to look at how it works and what the patient experience is and receiving the test was really exciting for us.

Kim 07:27
Really interesting, really interesting. Jon, the study is called INCLUDE. Tell us, first of all, what does INCLUDE stand for? I imagine it’s an acronym. What is this study investigating? How are you studying it? And you know, what do you hope to learn from this study?

Dwight 07:43
Yeah absolutely. So INCLUDE is an acronym. We wanted the name of the study to project the underlying idea of the study, which is that we want this test to be available and to be inclusive of all folks, not only those who have access to care through well coordinated health care systems with strong insurance plans. And so INCLUDE stands for implementation and navigation of cancer liquid biopsy to understand diverse patient experiences, and the most –

Kim 08:19
Rolls right off the tongue. We’ll just call it INCLUDE.

Dwight 08:20
Yeah, very easy to remember. And so the main goal is to enroll folks who are at elevated risk for a cancer diagnosis. That includes people over the age of 50, where there has been significant and documented increase in the incidence of cancer but also a lot of other folks that we are seeing in the community and serving within Whitman Walker, including folks who are living with HIV, who are known to be at elevated risk of cancer, folks that have experience with substance use, and a range of other conditions, including family history. And what we’re doing is enrolling folks into the study, we are doing a brief survey to understand their concerns about cancer, their experiences with cancer screening, their thoughts about the testing process. We’re then taking blood. And then a couple of weeks later, folks receive their result. And we are coordinating any follow up related care that they may need in partnership with Cancer Support Community who is offering for free their cancer navigation services, particularly to those who receive a signal positive result. However, Cancer Support Community is standing by to support everyone in the study, including those who may receive a negative result.

Kim 09:37
So you’re not just looking at this sort of clinical or blood draw results of the study, you’re looking at people’s sort of attitudes and behaviors and really understanding this implementation in an FQHC. setting.

Jon 09:46
That’s exactly right. In fact, the test results are not a primary focus of the study. We are not trying to predict who does and who does not receive a positive signal on the test. We are really looking to understand how can we make this test more widely available? And what are people’s experiences so that we can ensure that when it does get rolled out more broadly, that people’s needs are well represented in that role?

Kim 10:09
And Jon, give me a sense of the timeframe about when you expect results from this study when there might be publication because when they have you guys back on at that point to talk about what we’re learning? Right?

Jon 10:20
That is a great question. We are certainly hitting the ground running with our enrollment process. We are seeking to enroll 500 people across the DMV. We have enrolled approximately 110 so far as of today, we are really ramping up that effort. We have a lot of different community partnerships that we’re developing specifically for this study. And so we’re hoping that sometime over the summer, we will complete our enrollment of those 500 people. And we’ll be getting hard to work at looking at the data and releasing information both for scientific publications, but also back to our communities.

Kim 10:57
Excellent. That’s great. And we hope you will come back to talk about the results on the show. Dwight, I want to ask you, I want to start with you. And then Jon, if you’d like to add in, please feel free. But Dwight, why is there a need to focus specifically on cancer screening access for people of color, for marginalized communities, and for members of the LGBTQ community?

Dwight 11:17
Yeah we recently opened our Max Robinson center in Ward Eight. And there was a Washington Post article that recently came out that basically spoke to the fact that Ward Eight has a shorter life expectancy than some of the other more fluent and predominantly white neighborhoods, which has historically been the case. And it’s completely unacceptable. And when you talk about issues like HIV, like cancer screening, like cancer in general, there’s continues to be disparities and communities like LGBTQ plus communities and predominantly Black communities that have been disproportionately impacted by these epidemics. And I think Whitman Walker continues to be a place where our advocacy and our push, continue, we continue to have firmer stances on providing resources and pushing back and providing, continued to be accommodating for these folks that have been overlooked in many ways in the healthcare system.

Kim 12:24
And, Jon, to add on to that, when we’re talking about, again, communities of color, marginalized communities, LGBTQ plus community, are we talking about, Jon, are we talking about access barriers? Are we talking about stigma? Are we talking about sort of understanding education and awareness? You know, talk more about these barriers and some of the things we can do to be overcoming some of these barriers?

Jon 12:46
Yeah, I mean, we’re absolutely talking about all of those things. And Whitman Walker has a long history of working in HIV, which was one of the first illnesses to be recognized as being very strongly influenced by social and structural determinants of health, things like economic factors, housing, stigma, as you mentioned. And so we have a long history of doing work in those areas and working to provide wraparound support to address each of those concerns. And we really recognize the importance of being able to do that within the cancer space, as well, given the different disparities that Dwight was mentioning with regard to health outcomes, specific to cancer. And I would say one of the things that was most exciting, particularly about doing this with Galleri is that there is so much disparity in terms of when folks are diagnosed with cancer, and then that leads obviously to a cascade of cancer related outcomes that are also disparate between marginalized communities. And so the great thing about Galleri is the opportunity to test for so many different types of cancer with one simple blood draw. And the opportunity to diagnose some cancers that have traditionally not been almost ever discovered until later stages like stage three, to diagnose those when they’re in their earlier stages when they can still be treatable. Some cancers, obviously, regardless of who has them, are much less likely to be able to be treated and to return to remission. And so I think this test provides a lot of promise for us to start really early in the cascade of that process, to identify and get folks into care early.

Kim 14:22
Right and, Jon, I know that the Galleri test tests for a positive cancer signal, not it’s, not a diagnostic test, but what you guys are doing is if there is a positive signal through the partnership with cancer support community, and I’m imagining other providers in the community, if there is a positive signal, you’re trying to create that sort of continuum of care, so folks can get to the sort of the diagnostic test, get to the right treatment specialist through that continuum and get the wraparound services that they may need to navigate through that process. Am I saying that correctly?

Jon 14:58
That’s exactly right. So Galleri is largely being implemented within health systems right now that can coordinate all of that within themselves, right, so they can shoot someone from their own primary care department into their oncology department. And that’s a pretty simple process. But when you’re implementing a test like this within an FQHC, whose primary focus is primary care, and does not have any internal places to refer folks for cancer related care, we need some extra procedures in place to ensure that continuity. And so the, the navigation services provided by CSC are allowing us to do that. So when someone gets a cancer signal detected result in the study, they may be a patient at Whitman Walker, they may be a patient somewhere else in DC or they may not be connected to health care at all, because we’re enrolling folks across the community, not only Whitman Walker patients. And so working with CSC, as well as with the team at GRAIL who are able to provide ongoing training to providers, we are giving those results back to our research participants, and providing them the tools to discuss those results with their healthcare providers. And the CSC navigation services are also there both to support the patient and the provider, and to help refer into other areas when the provider for example, may not know who to refer someone to for diagnostic workup with regard to a specific type of cancer.

Kim 16:23
Got it terrific, really, really helpful. Such an interesting, an interesting study, Dwight. I want to pivot for just a minute, I want to congratulate all of you on Whitman Walker’s recent 50th anniversary. Again, as somebody who’s been connected to the organization for many, many years, I’ve seen a lot of change and transition and growth in the community and the pivot to become an FQHC. What are some of the new and exciting things happening there, Dwight, and what can we expect in the next 50 years?

Dwight 16:51
Yeah, this feels like a family reunion. But, yeah, we’re really excited to celebrate our 50th anniversary. As Jon mentioned, one of the most special things that I’ve experienced in my short time at Whitman Walker is the fact that we have historically been on the front lines of every single major health outbreak since the AIDS epidemic. And really, if you fast forward to more recently with the COVID 19 pandemic, and even the mpox, monkeypox outbreak, Whitman Walker was there. And for the next 50 years, I think what it looks like is Whitman Walker continuing to be there. We by no means assert that our services and our organization is perfect. One of the things that I love is that we’re constantly working to evolve and learn from our mistakes and adapt to the changing times. And so for the next 50 years, there’s a lot of uncertainty, especially in this current political climate. But there’s a lot of great work happening to ensure that we’re going to continue to persevere, to continue to learn from the community, to connect with the community, and to offer resources to meet the community where they are in the times that we’re facing.

Kim 18:08
Terrific. Great mission. Terrific. Dwight, thank you for that answer about the next 50 years. Sounds like some exciting things coming down. Jon, I want to ask you the same question. What’s to come in the next 50 years? You know, what’s the vision? What can we be looking forward to from Whitman walker?

Jon 18:25
Yeah, thank you so much for that question. I think Dwight did a wonderful job of talking more about Whitman Walker Health, which of course, is our federally qualified health center. And I would love to also briefly add that in 2018, Whitman Walker reorganized, and one of the outcomes of that was that we founded the Whitman Walker Institute, which is an affiliated organization that operates alongside of Whitman Walker Health. And we have the research, policy, and education arms of Whitman Walker’s mission. And so what that means is while Whitman Walker is an incredibly locally focused organization with regard to services and care Whitman Walker Institute really takes a national perspective. And so we’re really trying to bring the model that Whitman Walker has perfected over all of these years, and helped to disseminate that at a national level. So we do research that has a national focus. But we also have a policy team that is heavily focused on various health related policy battles across the United States right now, they get really involved and have a lot of expertise, particularly in a lot of the battles around gender affirming care right now. But also something that was really exciting about this study was that there will be a lot of health policy related issues that will come out of tests like this. Coverage is obviously one that will be at the forefront. And we have a lot of folks on our team that have expertise in insurance and health coverage related issues. And so that’s also another reason this was a really exciting opportunity for us. And then our education and training arm provides training across the country to in particular to health care providers right now focused on how to provide culturally affirming care to LGBTQ plus populations. But that department is also growing and really growing its focus beyond that as well to really focus on the various issues that folks are facing in terms of health care.

Kim 20:11
Fantastic. Thank you both for giving us a little bit of a window into the, into the future there at Whitman Walker. Very exciting. Dwight, where can our listeners learn more about Whitman Walker and all of your services?

Dwight 20:23
So you can visit our website at whitman-walker.org or you can follow us on all of our socials at Whitman Walker. We are pretty easy to find. We would love for you to connect with us. We have a host of community events scheduled throughout the year. You can find us in the Pride parades every year. We usually have some sort of funny t-shirt or something going on. And we usually host our Walk to End HIV in October. So we would love to have the community come out and to support and to continue to connect with us.

Kim 20:58
Great. Fantastic. I want to thank you both for joining us. It’s great to learn more about what’s happening at Whitman Walker today. Wonderful to hear about the INCLUDE study. We definitely want to have you guys back when you have some results to share, because I’m sure it will be not only interesting and exciting to learn about the results of the study, but to your point, Jon, I think it really could be a model for other FQHCs around the country, you know, how do we implement this kind of test in an FQHC? And how do we ensure we’re providing that continuum of care for folks who do happen to show up with a positive cancer signal. So really great study, really exciting stuff. And I just want to thank you for joining and sharing today. This is The Cancer SIGNAL presented by GRAIL. I’m Kim Thiboldeaux, please rate and review our podcast and be sure to subscribe to learn more about the impact of early cancer detection on future episodes.

Based on a clinical study of people ages 50 to 79 around 1% are expected to receive a cancer signal detected result, which includes predicted cancer signal origins. After diagnostic evaluation, around 40% of people are expected to have a confirmed cancer diagnosis.

The Galleri test is prescription only. The Galleri test is recommended for use in adults with an elevated risk for cancer, such as those age 50 or older. It is not recommended for individuals who are pregnant, 21 years or younger, or undergoing active cancer treatment. Galleri should be used in addition to routine cancer screening. Galleri does not detect a signal for all cancers. False positive and false negative results do occur. For more information, including important safety information, please visit galleri.com.


Important Safety Information
The Galleri test is recommended for use in adults with an elevated risk for cancer, such as those aged 50 or older. The Galleri test does not detect all cancers and should be used in addition to routine cancer screening tests recommended by a healthcare provider. Galleri is intended to detect cancer signals and predict where in the body the cancer signal is located. Use of Galleri is not recommended in individuals who are pregnant, 21 years old or younger, or undergoing active cancer treatment. Results should be interpreted by a healthcare provider in the context of medical history, clinical signs and symptoms. A test result of “No Cancer Signal Detected” does not rule out cancer. A test result of “Cancer Signal Detected” requires confirmatory diagnostic evaluation by medically established procedures (e.g. imaging) to confirm cancer.

If cancer is not confirmed with further testing, it could mean that cancer is not present or testing was insufficient to detect cancer, including due to the cancer being located in a different part of the body. False-positive (a cancer signal detected when cancer is not present) and false-negative (a cancer signal not detected when cancer is present) test results do occur. Rx only.

Laboratory/Test Information
GRAIL’s clinical laboratory is certified under the Clinical Laboratory Improvement Amendments of 1988 (CLIA) and accredited by the College of American Pathologists (CAP). The Galleri test was developed, and its performance characteristics were determined by GRAIL. The Galleri test has not been cleared or approved by the Food and Drug Administration. GRAIL’s clinical laboratory is regulated under CLIA to perform high complexity testing. The Galleri test is intended for clinical purposes.