Clinical Trials

Narrator: Coming up on Mayo Clinic Q&A.

Sonia, Mayo Clinic Patient and Clinical Trial Participant: Getting the word out is really important, especially when it comes to diverse communities. People need to be aware that these studies are out there. And then they give you hope. That's the reason why I do them. It's because they give you hope.

Narrator: That hope comes from having clinical trials that include a diverse group of participants. The more data collected from ethnic groups can help bring newer and effective treatments to patients seeking care.

Gerardo Colon-Otero, M.D., Medical Director and Site Lead, Florida Campus of the Mayo Clinic Center for Health Equity and Community Engagement Research: It is critical that the representation on those studies be diverse. That includes all patients. And we're working really hard at Mayo to make sure that that happens. We're going to make a mark to make sure that the representation is representative of what our country is.

Halena M. Gazelka, M.D., Medical Director, Public Affairs: Welcome, everyone, to Mayo Clinic Q&A. I'm Dr. Helena Gazelka.

Like many health care organizations, Mayo Clinic is working to address disparities in equity in healthcare. This work is not only underway in the clinic where we see patients, but it also includes addressing equity issues in medical research and clinical trials.

Joining us to discuss this today are Dr. Gerardo Colon-Otero and Sonia. Dr. Colon is the medical director and site lead for the Florida campus of the Mayo Clinic Center for Health Equity and Community Engagement Research. Try saying that fast five times. Mrs. Goins is a Mayo Clinic patient and clinical trial participant, and we are so grateful to have them both here today. Thanks for joining us on Mayo Clinic Q&A.

Sonia: Thanks for having us.

Gerardo Colon-Otero, M.D.: Thanks for having us.

Halena M. Gazelka, M.D.: Thank you for being generous with your time — just as you have with being in a clinical trial, Sonia. And we'll get to that in a little bit.

Dr. Colon, could you tell us first for our listeners, what are clinical trials ,and what is the role of research volunteers like Sonia in conducting clinical trials?

Gerardo Colon-Otero, M.D.: So clinical trials are treatments that are part of what we call research. It's a way that we study new treatments that hopefully will improve the outcomes of many diseases, including cancer.

I'm a medical oncologist, so I take care of cancer patients. So the way we make progress in the management of different diseases is actually by doing clinical trials. So whenever there's a new drug that is being developed, it is brought into what we call the clinical trials, where we test these new drugs in patients with a given condition in hopes that the new drug will become eventually the standard and will improve the outcomes of those giving conditions.

So, for example, if it is a breast cancer that is already metastatic and spread, we need new treatments because we need to improve the outcomes and, hopefully, eventually, cure all the women with metastatic breast cancer, which we are not there yet. And by doing the clinical trials, we're hopefully able to get there.

So, I mean, that has happened, for example, with lung cancer. So I remember very well when I first started at Mayo Clinic in Florida 35 years ago visiting with a 34-year-old young man who had widely metastatic lung cancer. And back then, 35 years ago, the standard of care was to refer them to hospice because any of the treatments that we had available back then would not prolong their survivals.

But now, 35 years later, the standard of treatment, and second-line and third-line and fourth-line treatments, have been shown to improve the survival of lung cancer. So that same young man who I saw 35 years ago, thanks to clinical trials, now has a chance of surviving beyond five years — and having standard of treatments that prolong survival beyond first-, second-, third- and fourth-line.

So that's why we're doing clinical trials, and that's the main goal of clinical trials.

Halena M. Gazelka, M.D.: That's amazing.

Now I can imagine that for the participants — patients — at times, it feels a little risky to do this — a little bit like a guinea pig for a new drug or a new way of doing something. What are the risks to patients and being involved, and what are the potential benefits to them?

Gerardo Colon-Otero, M.D.: So any treatment with a new drug potentially has some side effects. But by the time they reach the human trial stage, they have been tested in animals. And there's enough data to suggest that they may work to warrant them being tested in humans. And usually by the time they reach humans, we first test any new drug that has never been tested in humans.

We are very careful about how we go about that, starting at a lower dose that we know is not going to cause significant side effects and then increasing the dose gradually once we don't observe side effects to reach the dose that we think will lead to significant beneficial effect. That's what we call a phase 1 clinical trial.

And then once that drug has passed that trial and we find that it's safe, we do what we call a phase 2 clinical trial, where we test that drug that is showing some potential beneficial effect in a number of patients — perhaps 20-30 patients with a given condition — and expecting to see a significant improvement in what the standard treatment offers. And, hopefully, we will see that.

And if we see that, we frequently then do what we call a randomized phase 3 clinical trial, where we compare that new treatment with the standard treatment, hoping to show that the outcomes are better — response rates are better, the time before the tumors come back are longer or that the patients will live a lot longer as a result of that new treatment. And after that, the drugs become approved then for that particular condition.

And then, even after that — after the drug is approved — there's ongoing testing on the drug to make sure that they don't have unexpected side effects that will be seen in a larger number of patients that are seen after the drug has been approved. So there's a significant concern about safety and what is the best for the patients as we design these clinical trials.

Halena M. Gazelka, M.D.: That's very interesting.

Sonia, I'm very anxious to get to you because we don't often have listeners and patients on our program. We're often speaking with physicians or other providers. And, so, thank you for being here today. It's just lovely.

Sonia: You're welcome.

Halena M. Gazelka, M.D.: I am wondering if you would tell us a little bit about your journey to come to Mayo Clinic and how you decided to participate in a clinical trial — what it's been like for you.

Sonia: Yeah, so, I was diagnosed with stage 2, HER2-positive, breast cancer last July. And, so, I had five rounds of chemo at another hospital. But then I went to the Mayo for a double mastectomy reconstruction and proton beam radiation, which I just finished on Friday. So, yay.

Halena M. Gazelka, M.D.: Congratulations.

Sonia: Thank you. Yeah, it's been a long journey. But Mayo is the best in the world. And, luckily, I lived like an hour and a half away from the Rochester clinic. And I was able to participate in their new vaccine study for HER2-positive.

And, so, this past week, I just underwent a CT scan, blood work and a body scan to participate in the trial. So in a couple of weeks, I should be getting my first vaccine. You don't know if you're gonna get the real thing or not because it's a 50-50. But, for me, it gives me 50-50. I'm like, hey, if I could participate and possibly get this vaccine, I'm gonna do it. So that's one of the reasons why I wanted to participate.

Also, you know, you're helping mankind by doing this. And, so, you know, it's an easy thing to do. And you also get to get medical procedures that you might not be able to get like with your regular insurance, like that body scan I got. It was a nuclear medicine body scan. I doubt my insurance company would just say, "Yep, go ahead and do this." But with this vaccine study, it's included, you know. And they also watch you really carefully. So I'm like, why not do this? So that's one of the reasons why I participate in trial studies.

I also have Crohn's disease, and I participated in two drug trials. And they're on the market now.

So to be able to see these drugs on the market and be able to have access to them before they become available to the public is a big win.

Halena M. Gazelka, M.D.: That's amazing.

Sonia: Yeah, I always tell everybody you should participate. I know you don't often see a lot of African Americans participating in drug trials too, and I want to make a difference. I want doctors and researchers to include African Americans in their studies, so that's another reason why I do this.

Halena M. Gazelka, M.D.: Well, we are delighted to have you here today, Sonia, because we want to change that too. And we are talking, doing a lot of work on diversity, equity, inclusivity here at Mayo Clinic. And we really want to expand that within our research work.

Dr. Colon, why do you suppose it is that research trials haven't always been very inclusive, and what are we doing about that?

Gerardo Colon-Otero, M.D.: No that's a real concern and a real issue because you want to make sure that the results of the clinical trial are applicable to the whole population and that the whole population will benefit from it and have access to these studies. So, like Mrs. Goins was saying, she has HER2-positive breast cancer. That particular cancer, before the discovery of the monoclonal antibodies that attacked the HER2 protein that are now commercially used, used to have the worst outcome of all breast cancers. And, now, thanks to clinical research and that medication being available, it now has one of the best, if not the best, outcomes of all the breast cancer subtypes.

And it's not only one drug.

But we have now like five drugs just over the last year. Three new drugs for HER2-only cancer have been approved that are actually incredibly active and are likely gonna be used. They're approved now after failure but likely will be used upfront to even cure more women upfront.

But it is critical that representation on those studies be diverse. That includes all patients, so that we can learn about this toxicity and the beneficial effects to make sure they're equal. And we're working really hard at Mayo to make sure that that happens.

Historically, throughout the country, African American participation and Hispanic participation has been lower in great part due to access to the studies and to where the studies are available. And, hopefully, Mayo and many academic institutions, with increased awareness of this — and with industry support as well — we're going to make a mark to make sure that the representation is representative of what our country is.

Halena M. Gazelka, M.D.: Yes, it makes sense that that would be very important.

I remember in medical school talking about certain clinical trials, and I'll just use the example of heart disease, Dr. Colon. But a lot of the trials had been done on middle-aged white males and didn't necessarily apply even to females or to Black males and females. And, so, it's not just widely applicable. You need to test in all communities where you might use that — in all ethnicities, etc., sex — is where you might use the drug, correct?

Gerardo Colon-Otero, M.D.: Correct. Yeah, no, in, for example, in breast cancer, there are some mutations that are predisposed to patients to breast cancer that are inherited. And those have been studied initially, predominantly in Caucasian or white populations. And it was initially discovered by studying Ashkenazi Jewish population that had these mutations — the BRCA1 and 2 — but most recently studying African-ancestry Caribbean females. We find that they have a huge — high, very high — incidence of these mutations as well. So if we don't study those populations — if you don't do the research — we fail to really discover the findings that are essential to lead to better treatment for those populations.

So, now, for the BRCA mutated breast cancer tumors, for example, we have specific medications that work in that subset of cancer. So it is critical so that all the populations can be benefiting from this research.

Halena M. Gazelka, M.D.: That's interesting and a terrific example.

Sonia, Dr. Colon has talked a little bit about why it's important to the medical community to be inclusive in clinical trials. Why was it important to you in particular to participate, and why do you think inclusivity might be important?

Sonia: Well, for us, it's like when you get your lab work, right, and you look at, say, your kidney function. They don't even have it for African Americans because it was studied on white men. And I'm, like, you need to have a variety of people participate in your studies, like the doctor said, because of different mutations or different genes.

And I know there are some, you know, stereotypes when it comes to African Americans not participating in studies. You look at the Tuskegee airmen experiment. People are scared. For me, my dad was a nurse, so I'm, kind of, not scared.

But, at the same time, I also want to do research. I'm a news reporter, and when I research stories, you know, I'm going to research my medical history too.

When I went on the Mayo's website, I did not find the study for this vaccine. I asked my oncologist, and they told me about it.

So I think getting the word out is really important, especially when it comes to diverse communities. Maybe advertise on radio stations or, you know, put them in magazines or something. But people need to be aware that these studies are out there. And, then, they give you hope.

That's the reason why I do them. It's because they give you hope.

When your doctor tells you, hey, you have breast cancer, and you have one of the fastest-growing breast cancer — and in my case, it's really aggressive — they rate you from a scale from 1 to 3. And mine was 3. And I'm like, I want to do everything I can to prevent this from, you know, recurring again. So that's the main reason why I'm doing this vaccine study.

And I'm hoping and praying that I'm actually one of the participants that doesn't get the placebo but actually gets the real thing.

Halena M. Gazelka, M.D.: I love what you said about hope, Sonia, because we talk about that so often. That really is why we're here — because we want to bring patients hope where they might not have found hope before. And, so, that was wonderful. Thank you for sharing that.

I just wanted to bring up a comment about what you said about that you may get the vaccine or you may not, and maybe Dr. Colon can just briefly explain this. But I think that Sonia is discussing randomization. And you had said earlier that often the study drug is compared to what would be "the standard of care" or the typical way to treat someone.

Can you explain just briefly why that would be?

Gerardo Colon-Otero, M.D.: Yes, because the reason you have to compare with the standard of care is because sometimes the new treatment ends up being not any better than the standard of care or maybe have more side effects. So it's critical — before you bring some something to the general population to use — that you know for sure that it is better than the standard of care.

In the case of Mrs. Goins' study, she had the standard treatment that hopefully leads to cure the majority of the patients. And the vaccine is a new treatment that has hopefully minimal or no side effects but hopefully will stimulate her immune system to kill any microscopic cells that may have escaped the chemotherapy and improved the outcome in her case.

So the reason why it is compared to a no-vaccine treatment — it's just a placebo that has no side effect — is because the outcome of that particular study is looking at recurrences down the road, and the standard of care is very good and hoping that the vaccine will improve on that further. And the vaccine is approved for this particular trial because the side effect profile is quite good. It's very low profile, low toxicity, so, hopefully, will be associated with improvement or over doing nothing aside from the chemotherapy and the radiation that she just completed.

Halena M. Gazelka, M.D.: And, Sonia, I have to say that that truly shows — and it's an incredible example of the generosity that comes with participating in a clinical trial because you don't really know that you're getting the study drug or not. But you're still willing to participate. So that even if this trial doesn't help you, it may help someone else.

Sonia: Exactly. It's a 50-50 chance, but if I have that 50-50 chance of getting this vaccine, you know, yay for me. But also, I want to give researchers tools that they could use to, you know, prevent this from recurring in somebody else if not myself.

I'm going to be on TDM1, which is a chemo and targeted therapy drug for about a year. And that'll be used with a vaccine. So I'll be at Mayo every three weeks to get this.

Halena M. Gazelka, M.D.: Oh, wonderful. We'll wave at you when we see you.

Sonia: Right, right. But I'm really blessed to be able to participate. That's how I feel about doing drug studies. And, I mean, this is a gift, you know, to be able to participate in a drug before it comes to market.

Halena M. Gazelka, M.D.: Well, we are blessed to have patients like you who are willing to further research like this.

Sonia: Thank you.

Gerardo Colon-Otero, M.D.: And it's absolutely fantastic that you're doing that. And, actually, the TDM1 being used in your case is a result of a clinical trial that was just completed and presented just a year ago that showed that doing TDM1instead of Herceptin or trastuzumab is better. It improves outcomes. Patients live longer.

So, as a result of that other study, which was also a randomized study that compared patients like you who had trastuzumab versus TDM1, the group that got the TDM1, compared to the code standard of care, did much better. So that's why you're benefiting now from that other clinical trial that was completed recently.

Halena M. Gazelka, M.D.: It's wonderful — like a domino effect.

Gerardo Colon-Otero, M.D.: Yeah, so your participation in this study will show that the vaccine improves over what TDM1 does. And it will become part of the standard of care.

So this vaccine trial is really exciting to me because it was actually developed at the Florida campus of Mayo. So it shows the collaboration of all the three campuses, like Dr. Keith Knutson and his team and Dr. Chomsri here is the PI of that study.

Sonia: Well, I'm very grateful that you guys are doing this study. And, hopefully, in a year, it'll be, you know, standard treatment. And everybody can benefit from this.

Halena M. Gazelka, M.D.: That's wonderful.

Dr. Colon, what can researchers do to be certain that they are increasing inclusivity in clinical trials as we go forward?

Gerardo Colon-Otero, M.D.: Yeah, there's increased awareness of the need for that at all levels — at the federal level, the government levels, at the academic medical center. So there are increased initiatives to make sure that the representation in our clinical trials represents our country's racial and ethnic composition. So there are a lot of reasons why that hasn't been the case. And addressing those issues is critical.

And it's not going to be only Mayo who is going to make it happen. It has to be a collaborative effort among all academic centers, among the government, on the patients, among the population because there are many, many factors that contribute to that.

For example, African Americans and Hispanics have worse outcomes from different diseases and less participation in clinical trial for many reasons, including less access to health insurance, higher prevalence of poverty and other factors that contribute to them having less access to care. So it's going to take a huge effort by everybody to make things that all those barriers are eliminated.

But, as Mrs. Goins was saying, there's less awareness too of clinical trials and is less easy to access them among the minority population. We have done studies in Florida, where we went to African American churches to tell the African American population in Jacksonville about the availability of clinical research, the importance of clinical research and participation, and making a clinical study available at the churches, which we were very successful in accruing to it.

So when you make the studies that answer the questions and the needs of the community make them available, the participation is not an issue. The issue is the access and availability of access to those studies.

Halena M. Gazelka, M.D.: Well, that's wonderful. And we've certainly started doing more virtual medicine during the COVID pandemic. And I would hope and imagine that the ability to use some virtual visits with patients, etc., might improve some of those access issues as we move forward.

Gerardo Colon-Otero, M.D.: Yeah, you're absolutely right, Dr. Gazelka, because, now, with the COVID pandemic, we had to do a lot of virtual things. And in terms of the maintaining the accrual for our clinical trial and participation, we had to convert some of the consenting, for example, to virtual. But some of that may persist beyond the pandemic as a way to facilitate the availability of trials to different communities and different populations. We have to deal with the issue of whether the population have really equal access to the internet and all those things, which are other issues. But those, hopefully, will lead to greater participation in trials.

Halena M. Gazelka, M.D.: Sonia, what would you tell family and friends who are thinking about participating in a clinical trial?

Sonia: Well, it's funny you should ask that. I belong to a couple of breast cancer support groups on Facebook, and I've already told them, hey, there's a vaccine study going on and you should, you know, contact Mayo. So, hopefully, they'll do that. But I would tell them not to be afraid and then for the fact that you get access to, you know, top-grade medical procedures. They watch you carefully. Like while I'm participating in a study, they're gonna watch me for like five years. So it's a big commitment. But I think it's worth it in the end if there's a product that's available to everybody and, you know, can help everyone. I mean, if you could avoid breast cancer, why would you not do this vaccine?

So I tell people don't be afraid, you know. It's gone through, you know, the FDA and all that other good stuff. But, you know, there's hope, so participate is my answer to people.

Halena M. Gazelka, M.D.: I think the other thing that I think about, Sonia, having worked on sort of this side of the of the desk is that people aren't allowed to participate in clinical trials if they aren't the right participant for it. So the goal is always to keep to keep the patient safe, to keep the individual safe at the same time that they're participating.

Sonia: Exactly. Because I have Crohn's disease, they were hesitant to let me participate in this study. So I had to have, you know, GI on board. They watched me for two or three months to make sure that I was OK on the TMD1. There were no issues.

I have an ostomy, so they were worried about that. And, so far, so good, there hasn't been any issues. So, going forward, I'm looking forward to participating in this study.

Halena M. Gazelka, M.D.: Wonderful.

Dr. Colon, what would you tell patients, friends, family who are thinking about participating in a clinical trial?

Gerardo Colon-Otero, M.D.: We always encourage that because we don't want to be doing the same thing we're doing now within my area of medical oncology. Unfortunately, once the tumors are metastatic or had spread frequently, it leads to the patients dying. So there's a lot of progress that needs to be done, and we don't want to see our next generation who's caring for those patients having the same outcome as just like I mentioned about the young patient I saw 35 years ago who I didn't have anything to offer. Now, here we are with five or six different drugs that prolong survival.

So we want to be 35 years from now curing all metastatic cancer patients. And the only way we're going to get there is with the clinical trials. Doing the standard of treatment for them is not going to get us to where we need to be. So that's how I encourage them.

There's a lot of safety as part of the trial, so that patients are safe. These decisions about which drugs to try and not and what are the toxicity, and there's a lot of safeguards if we see toxicity to stop the trial and analyze it. So we're all working together for the patient's benefit.

So there's it is definitely the preferred treatment whenever we have an option. But, obviously, we take into consideration the individual patient's needs to decide what is the best treatment for the patient. And most of the time, clinical trial may be the best option. And, so, we in general try to encourage patients.

Halena M. Gazelka, M.D.: That's wonderful.

Thank you, Sonia, for being here today.

Sonia: Thank you for having me.

Halena M. Gazelka, M.D.: Thank you, Dr. Colon, for being here today.

Gerardo Colon-Otero, M.D.: My pleasure. Nice to meet you, Mrs. Goins, and thank you so much for participating.

Sonia: Thank you.

Gerardo Colon-Otero, M.D.: Best of luck. You're going to do well. You're going to see it.

Sonia: Thank you. Thank you. It's all about options, and the fact that this is another tool in the tool bag for the doctors to help me is wonderful.

Halena M. Gazelka, M.D.: I love that "tools in the tool bag." I use that all of the time with patients.

Sonia: More tools.

Halena M. Gazelka, M.D.: That's right.

Our thanks to Dr. Gerardo Colon-Otero and Mrs. Sonia Goins for being here today to talk to us about inclusivity and clinical trials. I hope that you learned something today. I know that I did. We wish each of you a wonderful day.

Narrator: Mayo Clinic Q&A is a production of the Mayo Clinic News Network and is available wherever you get and subscribe to your favorite podcasts. To see a list of all Mayo Clinic podcasts, visit newsnetwork.mayoclinic.org. Then, click on podcasts. Thanks for listening, and be well. We hope you'll offer a review of this in other episodes when the option is available. Comments and questions can also be sent to the mayoclinicnewsnetwork@mayo.edu.

Narrator: Thirty-six years ago, Dr. Michelle Halyard began her journey as a radiation oncologist at Mayo Clinic in Arizona.

Michele Y. Halyard, M.D., Radiation Oncology: I loved Mayo and decided that I wanted to practice in Mayo in Arizona, so I joined the staff here in 1989. And it has really been a tremendous journey.

Narrator: A journey Dr. Halyard remembers began with concerns about a lack of diversity.

Michele Y. Halyard, M.D.: I didn't see a lot of people of color at the clinic, either working or as patients. And I really thought what a shame that was because of the just preeminence of healthcare that we deliver.

Narrator: And that lack of diversity, Dr. Halyard feared, impacted patient outcomes.

Michele Y. Halyard, M.D.: People who perhaps feel shut out from the healthcare system, people who experience structural racism that prevents them from getting in for the best care. That really results in excess death, excess suffering amongst populations of people. And it's not just underrepresented people. It's people who are really not in that that population that can take advantage of all that there is to offer.

Narrator: So Dr. Halyard went on a mission to increase health equity, inclusion and diversity. In 2011, she founded the nonprofit organization the Coalition of Blacks Against Breast Cancer to raise awareness about the risks of breast cancer in Black women and men.

Michele Y. Halyard, M.D.: We also go out into the community to educate about the importance of breast cancer screening diagnosis treatment and survivorship.

Narrator: The organization also now raises awareness about prostate cancer.

Dr. Halyard also serves as the Suzanne Hanson Poole Vice Dean of Mayo Clinic Alex School of Medicine and the dean of the Arizona campus. She also mentors physicians who can continue her work toward health equity.

Sarah E. James, M.D., Ph.D., Radiation Oncology: It's very hard to put into words the impact that she's had as a role model on myself and so many others. And as a Black female, she has served in such a leadership role for so many years.

Narrator: After nearly four decades at Mayo Clinic in Arizona, Dr. Halyard looks back with a feeling of progress and forward to the future with hope.

Michele Y. Halyard, M.D.: In the beginning, where people didn't really even feel comfortable in talking about the word diversity, now having an Everybody In initiative where we've devoted $100 million to fighting racism, I think we've come a long way.

Narrator: For the Mayo Clinic News Network, I'm Marty Velasco Haynes.

Narrator: Dr. Lionel Kankeu Fonkoua is leading a clinical trial through a Robert A. Wynn Diversity in Clinical Trials Award program.

Lionel A. Kankeu Fonkoua, M.D., Oncology: It's a program that's designed to make sure that those clinical trials are community-designed, -conducted and -informed to make sure that whatever research we do, we have the intent from the get-go of thinking about the communities that are at risk, vulnerable and most likely to benefit.

Narrator: His study focuses on the immigrant African and Asian communities of Minnesota, with a high prevalence of hepatitis-induced hepatocellular carcinoma — a type of liver cancer.

Lionel A. Kankeu Fonkoua, M.D.: This is an at-risk population that we are intentionally targeting because they are not represented in a lot of our immunotherapy trials.

Narrator: And that can be a problem for the patients who need treatment most.

Lionel A. Kankeu Fonkoua, M.D.: It's very important to make sure that the at-risk population, the vulnerable population that's going to most likely benefit the most from the therapy, is represented because you have to tell them. It's hard to tell a patient this is a study, a clinical trial that had a thousand patients and only two of them, or 1 or 2%, were actually like you. This is, again, the area that was treated.

Narrator: Representation and building trust matter when working with patients.

Lionel A. Kankeu Fonkoua, M.D.: It helps with that initial contact — that initial trust. You know someone might be more receptive if, you know, it's coming from someone with the same race, from the same ethnicity or, more importantly, from the same background and life experience.

Narrator: Through the study, Dr. Kankeu Fonkoua hopes to help patients who are not eligible for surgery by combining radiation therapy with a dendritic cell vaccine, a type of immune cell modified in a laboratory and given after radiation therapy.

Lionel A. Kankeu Fonkoua, M.D.: That's a combination of radiation therapy with a dendritic cell vaccine. That's innovation. That's an innovative type of approach to really use the patient's own cells that we modify — immune cells we modify — to target their own tumor-specific antigens, you know. So those are therapies that 5 to 10 years ago or more, we didn't have the ability to do it. And I think that's kind of where we're moving forward.

Narrator: What may be surprising is that Dr. Kankeu Fonkoua says he did not intend to be a doctor.

Lionel A. Kankeu Fonkoua, M.D.: I was supposed to be an engineer.

Narrator: It was his grandmother's battle with gastric cancer …

Lionel A. Kankeu Fonkoua, M.D.: There was not a lot of research going on.

Narrator: …that steered him toward a new path.

Lionel A. Kankeu Fonkoua, M.D.: My parents definitely raised me with that scientific method — both scientists. But I think the drive to go into this humane profession — the spirit behind it — is my grandmother.

Narrator: He says his grandmother's spirit inspires him still to this day.

Lionel A. Kankeu Fonkoua, M.D.: So, right now, you have a good quality of life.

To be honest, in every patient, I see her. And I see an opportunity to hopefully provide better care and hopefully outcomes than what she had.

Narrator: For the Mayo Clinic News Network, I'm Joel Streed.

Floyd B. Willis, M.D., Family Medicine: Many describe Alzheimer's and other memory loss diseases as the silent killer. It can really, insidiously creep into your family or your neighborhood. And sometimes people don't know it's there.

Narrator: Dr. Floyd Willis has been a practicing family medicine physician for more than 30 years. He's drawn to solving problems, particularly ones that have a community-wide impact.

Floyd B. Willis, M.D.: It is extremely important to understand how we can predict who might get it and discover early treatments for it.

Narrator: Connecting the community to solutions is why he's helped the Mayo Clinic Alzheimer's Disease Research Center in Jacksonville, Florida, recruit participants in research studies.

Floyd B. Willis, M.D.: Black people in America are about twice as likely to get Alzheimer's disease and other memory loss disorders. And they're very interesting and complicated reasons behind that.

Narrator: High blood pressure, diabetes and obesity have been linked to an increased risk of Alzheimer's disease — factors that are also disproportionately higher in Black Americans.

Floyd B. Willis, M.D.: Often, communities aren't aware of that. To treat those chronic diseases and keep this part of the body healthy also keeps this part of the body healthy. So it's really important that we get this information out. It may be a way to reduce some of this increased risk for African Americans.

Narrator: The Alzheimer's Disease Research Center's outreach in Jacksonville's historically Black communities revealed a deeper understanding of cultural barriers.

Floyd B. Willis, M.D.: To reveal all of these very personal things about their mind, their brain, their thought. I mean, some people equate that to this spirituality. Once you can convince people that, yes, you can trust the system. And, yes, memory loss is something that we should talk about. It's not just a thing that happens to everyone as they get old. Some of it can be prevented.

Narrator: He says a change in memory does not automatically mean a diagnosis of Alzheimer's disease.

Floyd B. Willis, M.D.: Work with their primary care physician to get all of those things that injure the arteries inside of your body under control.

Narrator: In his decades of outreach and advocacy, Dr. Willis says what drives progress is diverse representation from patients and study participants to researchers and physicians and …

Floyd B. Willis, M.D.: Partnering with the community. And if you can, involving the community in the work that you're doing, asking them what they find important. What do they want us to study?

Narrator: For the Mayo Clinic News Network. I'm Alex Osiadacz.