Stephen Gruber, MD, PhD, Chair of Center for Precision Medicine at City of Hope, and Bita Nehoray, MS, CGC, Genetic Counselor Manager at City of Hope, talk about free genetic testing.
Interview conducted by Ivanhoe Broadcast News in 2023.
There are a lot of barriers for people to precision medicine, and that’s what you guys are trying to help, correct?
Gruber: City of Hope is making great progress in increasing access to precision medicine. In fact, one of our commitments is to make sure that we are delivering a new standard of care. In order to do that, we’ve tried to build infrastructure that’s really helped us bring precision medicine, not only to our patients here at City of Hope in Duarte, California but also to all of our more than 30 community sites in Southern California.
How did you change the structure to actually even make this possible because it’s expensive, it’s time-consuming?
Gruber: We changed the way we approached thinking about delivering precision medicine at scale by doing something I’m not sure that other cancer centers have had the opportunity to build yet. That’s by recognizing the need that every patient needs access to precision medicine. We’ve made the commitment to ensure that every single one of our patients is invited to participate in our program, which allows us to provide genetic testing and genomic analysis for all of our patients. It’s a big commitment to make, but one of the things that we did was build a structure that allows us to invite patients to participate in that process, and then deliver genomic medicine at scale.
How can you do it? How did you change it? Because genetic testing has always been expensive, at times. Were you able to use new technology like AI? Were you able to bring all the genetic testing in health?
Gruber: Two things made it possible for us to change the way in which we are delivering care across an enterprise system. The first is really an enterprise-wide commitment to make sure that City of Hope recognizes that the best care delivers the most informed care to each of our patients and their family members. To do that, we realized that genetic testing can be done in a way that is scalable by inviting all patients to participate in the option of having their genetic predisposition identified, not just because it’s the right thing to do for all of our patients and to understand the benefits to family members, but it’s also making a huge impact for how we design treatment plans for patients. Genetic information helps inform better care for our patients. We actually recognize that it’s going to be the most cost-effective care as well. If we make it uniformly available to everyone without thinking about all the mechanisms of approval that would be needed other than a patient’s permission and our commitment, then we’ve been able to deliver genetic testing to all of our patients who actively opt-in to participate. Fortunately, we’ve also found that patients are incredibly receptive and grateful for this opportunity. The overwhelming majority of our patients, greater than 90 percent of patients whom we invite to participate in this opportunity to deliver precision medicine at scale, say, yes, please.
Not only are these patients helping themselves, helping their family members, but all of that data is going to be used to help create better treatment therapy drugs in the future, right?
Gruber: We are committed to using this information in a way that really advances the frontiers of cancer care, through research and discovery, through tools like artificial intelligence and machine learning. We’ve been able to already accomplish that in ways where it’s incorporated into our medical record system to help us identify patients who might be at an increased risk of adverse effects from specific treatments or would benefit from treatments that we know will help them. This is especially important when you realize how difficult it is for clinicians who are really under pressure to take care of the patients in their office as efficiently as possible in the best way that keeps patients not waiting and patients getting the information that they need right away. By trying to develop some systems that will help our physicians get that information right at their fingertips uniformly across the entire enterprise has made a big difference. We still have progress to make, especially as we implement it nationally across our sites, in Arizona, Illinois, and Georgia. But we’ve made incredible progress here in Southern California. It is a system that’s thinking about how we can transform national models of cancer care.
Tell me about City of Hope expanding access.
Gruber: We are committed to making sure that we are expanding access to the information that we know is going to help improve outcomes for our patients, especially patients of diverse backgrounds. We recognize that precision medicine gives us the opportunity to deliver care in a way that is so attentive to exactly the patients who are before us, including their social constructs and all of how they are informed by the community in which they live. By being attentive to making sure that we’re delivering precision medicine for diverse populations, we can really represent and care for the communities that we serve. Let me just elaborate on that, if I may. City of Hope’s goal is to make precision medicine more accurate and effective for diverse populations. By serving as broad a community as we can here with an enterprise-wide vision for what we can accomplish. We’re making that possible through new research discoveries and also making sure that we can deliver care that’s as precise as possible for each of our patients.
I’m seeing everybody is talking about personalized medicine now. Tell me about that.
Nehoray: Yes. I think that that’s where the field of healthcare is headed and where it needs to definitely continue to go. I think the key thing is finding ways to be able to close the care gap because historically, personalized medicine has not reached underserved or underrepresented populations, and so it’s really exciting at City of Hope that we’re finally being able to bring that to our patients and their families.
Is that where the Inspire study comes in?
Nehoray: Yeah. The Inspire study that we now can offer through our Center for Precision Medicine here at City of Hope is a great opportunity for all of our patients walking through the door, and it’s what we would call a universal genetic testing program. All of our patients who are interested and willing are offered the opportunity to do genetic testing at no cost to them, which has removed tremendous barriers to care and has opened doors for identifying opportunities for prevention, identifying clinical trials for improving treatment outcomes, as well as opportunities for cancer prevention for them and their family members.
How does that change the game for these people?
Nehoray: That’s such a great question and a lot of people ask, and that’s exactly what we do when we meet with folks to talk about genetic testing is how is genetic testing helpful for them and their family members? There are several different ways. For some people who are actively being treated for cancer here at City of Hope, it may be an opportunity to identify opportunities for prevention of other cancers or the identification of better treatments. I like to think of actually someone I recently spoke to who was identified to have a genetic change that increased her risk for breast and ovarian cancer. We got those results just before she was about to start chemotherapy, and it changed things for her. We were able to offer her a more appropriate and better line of therapy that would have improved outcomes for her, which is exciting to be able to offer that now to our patients, and on top of that, we’re thinking about the family in genetics. It’s a great opportunity to be able to bring in her family members, her children, and her siblings to talk about opportunities for them to be able to get tested as well so that we can hopefully detect cancer very early if they carry that same genetic risk factor or prevent it from happening altogether. It’s been a tremendous game changer as it relates to prevention in families, but also in really personalizing the most appropriate treatment plan for our patients who are undergoing testing.
These people know they’re coming in, they’ve been diagnosed with cancer. But by doing these genetic tests, you’re changing the course of their treatment because you do know what would work best, right?
Nehoray: That’s right. Genetic testing can be done in several ways, but it’s been able to identify if are there targeted therapies that people would benefit from more related to their cancer. What we know is that no person is the same, and similarly, no cancer is the same. We want to understand what is the root cause of that cancer. The Inspire study that we have here at City of Hope is an opportunity to both identify inherited genetic changes but also changes specific to someone’s cancer to really try to optimize and increase opportunities to create the best treatment plan for our patients.
Is this open to family members as well?
Nehoray: Yes.
Many cancers are genetic. It’s something that you just don’t get tested for. If you have the brochagene you do, but that’s only if you have the money and you have the resources.
Nehoray: Yes. Historically, genetic testing for cancer, or genetic testing in general has been very expensive, and so a lot of folks have not had access to this necessary care. Opening the door to not just testing for some of the more common hereditary cancer syndromes, but also other conditions related to cardiovascular health and less common hereditary cancer syndromes has been able to allow us to identify as many people as possible. I think what’s truly unique is our opportunity to also bring in family members as well to get tested and understand this information if that’s something that they’d like to do. We think about not just the individual, the patient, but also their family overall, and what we can do to support the entire family coming in here at the City of Hope in a holistic approach if you will.
Is the Inspire study worldwide, countrywide?
Nehoray: Yeah. We are a national cancer research and treatment organization, it’s exciting that we’ve been able to expand through our 30-plus clinical sites to bring precision medicine to the community, and we now have centers nationally or sites nationally here at City of Hope, including in Arizona, Atlanta, and Illinois. It’s exciting to be able to expand our reach and bring access to people, and that’s been much needed for a very long time.
The genetic test, is it easy? Is it a spit test? Is it a blood test?
Nehoray: That’s a great question. Genetic testing has become easier to facilitate and to do over time, both by just drawing a sample of blood, in some cases, spit or saliva sample, and we can offer telehealth visits as well. Often we’re able to send kits directly to a patient or their family members’ home to facilitate genetic testing. Our goal is to make this as easy as possible, considering all of the other things that patients and families are going through to try to get the necessary care that they need.
What’s the end goal of the Inspired study?
Nehoray: Our end goal is really to improve outcomes for our patients and their families. We hope to learn more about cancer, how to diagnose, how to treat, how to screen and prevent cancer, but also think about that person overall, how are they doing and handling this information? Are there better ways that we could be communicating this information? Are there better opportunities or time points when we can work these things into someone’s care? To make it as easy, a process as possible, considering everything that someone may be going through in their cancer journey. Then also the opportunity just to try to identify people so that we get to family members before cancer happens as a way to prevent this from happening and change the legacy of cancer in some of these families that have been hit with it pretty hard.
Do you have any numbers of how many people have been helped by this?
Nehoray: Absolutely, we have been very fortunate and very appreciative of our patients and their family members who have joined our inspiring study at City of Hope. To date, we have over 21,000 people who have joined the study and have received helpful information. Specifically, 20 percent of those who undergo genetic testing through our study have been found to carry a genetic change that impacts their care or their family’s care in a particular way. I think what’s also really important to recognize with that is because historically there have been many barriers to genetic testing because of costs, and access, we’re able now with this study with the inspired study at the City of Hope to expand testing to people of all ages of all backgrounds, men, women, all different cancer types, whereas before it was very limited to a certain subset of people. We’re I think also continuing to be surprised at how many families we may have been missing in the past. It’s exciting to know that we’re able to identify information that can truly be life-saving for these families that we weren’t able to before.
How are you able to do it? It used to be very timely and it used to be very costly. Can you be very specific on those two things of how you’ve been able to change that?
Nehoray: Absolutely. We’ve been able to incorporate a lot of changes in care here at City of Hope to be able to improve on the overall time and turnaround to be getting this information, genetic testing information. Then also the cost as well in addressing that and removing that barrier for our patients. Specifically, we are very fortunate and City of Hope recognizes the value of this information for patients and their family members. We have been able to grow a very large team to help support and work and partner with treating providers throughout City of Hope, whether it’s a medical oncologist, their surgeon, radiation oncologist, or even meeting folks before having surgery. But the point is that we are meeting patients where they are. We’re even contacting them by phone if it’s not something where they’re going to be at City of Hope in the next few days. But we’re making lots of changes to be able to reach people as soon as possible and as early as possible in their treatment journey to be able to talk to them about genetic testing, joining the study, collecting their sample to facilitate the testing itself. So I think for starters we’re reaching people as early as possible to get things going as they’re trying to sort out their treatment plan. To address the time and cost issues that have longstanding been issues or challenges for our patients, we are meeting folks as soon as possible in their treatment journey to offer them the opportunity to undergo testing whether it’s by saliva at home if they’re not going to be at City of Hope for some time or while they’re already at City of Hope and collecting a sample there to facilitate the testing. The other great thing is we’ve been able to partner with some great laboratories to be able to facilitate this testing as quickly as possible. Because we’ve removed the barrier of cost we don’t have to worry about the delays related to insurance to be able to get those test results also as quickly as possible. Our goal is to meet patients where they are and try to remove as many of those other extra steps that we’ve experienced in the past when it comes to genetic testing to get the care that they need.
When it comes to genetic testing, most of it is usually just to do the DNA and not the RNA and you’re combining both of those, correct?
Nehoray: In the past genetic testing may have been limited to DNA. Now genetic testing may also incorporate RNA which is an opportunity to be able to get better accuracy and reduce uncertainty with the test results. We’re able to do that on the inherited side as well as on the tumor side related to cancer. We are looking as far-reaching as we can and using the most up-to-date technologies to really try to identify changes that could be beneficial for our patients.
Have you noticed if certain diseases are popping up more that you’re catching earlier than others?
Nehoray: It’s a great question. Historically when we’ve done genetic testing, it’s predominantly been in breast and ovarian cancer, colon cancer, and pancreatic and prostate cancer. We’re common players when we think about testing for hereditary cancer. What we’ve now learned as we’ve expanded to all cancer types is that we’re identifying gene variance or gene changes and other types of cancers that certainly impact treatment. In particular lung cancer, we’ve been identifying several folks with genetic changes that could impact their care and they’ve largely been underrepresented because insurance companies or national guidelines haven’t necessarily looked at that. Our patients are also helping to contribute to the research to support needs and policy change so that we can advocate for greater access to care overall. I would say lung cancer most certainly but across the board melanoma, and hematologic cancers we’re learning a lot about other cancers that have been underrepresented by what we’re able to offer with the Inspire study.
END OF INTERVIEW
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