Strength in Unity: Advocating and Advancing Research for Brain Tumors

Episode Transcript

Dr. Daniel Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Katy Peters:
And I am Dr. Katy Peters, and this is the Brain & Life podcast.

Dr. Daniel Correa:
I am glad you're joining us today and we are honored to welcome Dr. Katy Peters as our co-host on the Brain & Life podcast.

Dr. Katy Peters:
Thank you very much. I'm excited to be here.

Dr. Daniel Correa:
Now, Katy, where are you joining us from?

Dr. Katy Peters:
I'm joining you from the wonderful Durham, North Carolina. I'm a physician here at Duke and I see patients with brain tumors.

Dr. Daniel Correa:
North Carolina representing here. And so you said you work with a community living with brain tumors, what is that specialty and is that the first thing you got into in neurology?

Dr. Katy Peters:
I'm trained in neurology, but I also got subspecialty trained in what we call neuro-oncology, and this is the science and the care of taking care of patients with brain tumors. I also dabbled a little bit in cognitive neuroscience, but I knew it was the patients with neurologic challenges that I would be working with for the rest of my life.

Dr. Daniel Correa:
We had a great time recording the episode talking about neurologic conditions and disorders on TV, and we're really excited having you here as our co-host.

Dr. Katy Peters:
I'm delighted, and of course, before I sort of get started and doing this, I guess I want to know what were your top two things that you learned since incorporating podcast hosting into your neurology career?

Dr. Daniel Correa:
Even more so just adding the idea of truly listening to what matters in someone's life, not just the symptom and how that symptom slowed down or impacted something they're doing, but where they are now, where they're going, the things that they hope for and wish their family. All of that helps really add a much richer understanding to what really impacts someone when they're living with a neurologic condition, recovering from it or want to move past an injury that they have.

Dr. Katy Peters:
That's great, that sounds like quality of life in a nutshell to me, the being, belonging and what you're going to become.

Dr. Daniel Correa:
Now, Katy, I'm really excited about this episode you put together. Tell us about it.

Dr. Katy Peters:
I'm so excited We have a Mr. David Arons. He's from the National Brain Tumor Society and Dr. Vinay Puduvalli who is a neurologist, a neuro oncologist, and they will discuss brain tumors and the importance of advocacy and research for those patients with brain tumors.

Dr. Daniel Correa:
Really touching on your specific areas of specialty, but specifically speaking to the broader community, the updates in science. I think that's going to be a really valuable episode for everyone. Now don't forget to subscribe so you don't miss our great interview with Dan Buettner, the bestselling author who joins us to talk about Blue Zones. You may have also seen his new Netflix documentaries Live to 100: Secrets of the Blue Zones.

Dr. Katy Peters:
We also have an episode featuring podcaster and advocate Lorri Carey, who shares her experience living with ALS and how her son helped her launch a podcast for the community impacted by ALS.
Welcome to our listeners today at the Brain & Life podcast. I'd also like to welcome Mr. David Arons, who is the president and CEO of the National Brain Tumor Society. He is the leader for the National Brain Tumor Society and also its philanthropic affiliate known as the Brain Tumor Investment Fund. He is at the top of advocacy for brain tumors and has authored several books around these topics and he also is involved with the National Cancer Moonshot Program by President Biden. And so I'm first going to start out and say, welcome, David, and can you just please, in addition to the brief introduction that I gave, can you just tell us more about yourself and describe the National Brain Tumor Society and its mission?

David Arons:
Thank you Katy and welcome to all the listeners. Really appreciate being here. National Brain Tumor Society is the largest patient advocacy nonprofit charitable organization in the United States with thousands of volunteers, supporters, advocates across all 50 states and territories. We have a singular vision of conquering and curing brain tumors once and for all, and our mission to get there is to unrelentingly invest in mobilizing, unite the brain tumor community to discover cures, deliver effective treatments and advocate for patients and their care partners. We've been around for close to 30 years and have, over that time, invested between $35 and $40 million in brain tumor research and have been the leading organization in public policy advocacy and have been instrumental in changes in law, increases in government funding for brain tumors. But one of the things we're very proud of every day is our ability to help patients and families going through the brain tumor experience, helping them find the treatment that they need and helping them every step of the way.
And so, we always invite patients, caregivers, doctors, researchers to come join us and be part of us and we will all work together to make sure no one goes alone through a brain tumor experience. In terms of myself, I'm a patient advocate at heart. I lost my father to cancer as a teenager and have always wanted to make a difference against cancer, and so I've worked at the American Cancer Society for a number of years, have been in government affairs and public interest. I was a lawyer and a litigator in private practice for a while, but it's not just a profession but a personal privilege to be with this organization, to be an advocate for the brain tumor community.

Dr. Katy Peters:
I think that our community really does deserve that and need that, so we really appreciate it. You mentioned that you were a litigator. When you have to go to the Capitol or to the White House, how do you think those skills as a litigator helps you be a champion for our brain tumor community?

David Arons:
They're very relatable. I was a lobbyist and a litigator in different jobs and they're all the skills of persuasion because we are trying to persuade the federal government, state governments to raise the priority level of brain tumors as a burden on our society and to alleviate that burden by investing in medical research, making transformations in healthcare policies such as health insurance and also making improvements to the way treatments are evaluated and ultimately reviewed and approved by the Food and Drug Administration. So it's really all of these areas, something like the Cancer Moonshot has put a spotlight on cancer as well as brain tumors, and so as part of that, it's important to be an effective persuasive advocate towards that program as well.

Dr. Katy Peters:
And you mentioned the Moonshot. I think that's so exciting. This is a cause near and dear to President Biden because he lost his son Beau and we have to know that, and also there's the military connection. I'd love to learn more about what the National Brain Tumor Society is doing within that Moonshot project. Then also, if you could give me a wishlist of three things that you would want to come out of that to hope to achieve in that initiative, I'd love to learn.

David Arons:
Absolutely. The Moonshot, like you said, has been an enormous opportunity. President Biden is of course the first president in the United States history to ever be a caregiver to a brain tumor patient. As a family member losing sadly his son Beau, he and First Lady Jill Biden have been through so much with this, but they've done an amazing job of elevating cancer to be one of the top five administration priorities, part of a unity agenda to bring everyone together. And this has added more resources to the cause of brain tumors, more funding to brain tumor research. It's also created in effect a new agency called ARPA-H or Advanced Research Projects Agency Health, which just got started last year, but now it's funded and it's starting to fund work in the area across cancers including brain tumors and surgery and diagnostics and other areas resulted in a new glioblastoma, which is the most aggressive form of adult brain cancer, glioblastoma, which sadly took Beau Biden's life, John McCain's life as well.
But there's a relatively new glioblastoma focused funding program at the National Cancer Institute, which has been inspired by the Moonshot. Recently, the White House Moonshot office held a forum on glioblastoma and a type of pediatric brain tumors called DIPG, and this brought everyone in the neuro-oncology community together, patients, patient advocates, doctors, to discuss the road forward, to discuss practical yet visionary strategies to making a difference against perhaps the most aggressive stubborn treatment resistant cancers on the planet, which are these terrible malignant brain tumors. And so the White House is showing a lot of leadership on brain tumors at the present time led by Dr. Danielle Carnival who heads up the Cancer Moonshot program. National Brain Tumor Society has been very much a partner in this working with the White House staff to help design the forum, to advocate for the funding, to advocate for the new agencies and to work with all of these elected as well as appointed officials and government workers to try to advance an agenda to getting more done.
In terms of the wishlist, the wishlist would be out of this Moonshot, one is that the Moonshot doesn't just focus on the most populous cancers. Of course, we need a lot of attention on breast, colon, lung and prostate cancers, the cancers most Americans get, but we also need a lot of attention on rare and ultra deadly cancers like brain tumors and liver cancer, pancreatic cancer and others. Childhood cancers are drastically underfunded. They need a lot of attention. There's only been a handful of therapies ever developed for kids with cancer, and only five therapies ever developed for malignant brain tumors or approved by the FDA, so we have a long way to go.
The first would be focus on rare and deadly cancers. The second would be to modernize the healthcare and particularly the insurance system to keep up with the advancements in science. There's an increasing gap between where the standard of care and cancer is today and the insurance structures that are designed to provide access and coverage of medically necessary services that are essential for cancer patients to enjoy the standard of care, if they will, to get the standard of care and to get investigational treatments. In fact, the leaders that set the cancer standards of care today have said that patients often get their best care while in a clinical trial, but yet insurance doesn't cover a lot of clinical trial participation. They don't cover the investigational drug. A lot of the services associated with clinical trials are also not covered or undercovered, and so we need to make sure that health insurance keeps up with where the standard of care is and the cutting edge of care for that matter.
The third thing on the wishlist is to make sure that we're learning from every patient that the Moonshot drives forward an agenda where we start to really capture both the data and the experiences of patients and caregivers. We collect that data, take care of that data, bring it together, aggregate it, marshal it, curate it, and fashion it in a way that can help research move forward. Research to learn new discoveries, but also to use that data to fashion new designs of clinical trials, able to help patients get on the right clinical trial at the right time and have the very best chance at survival if we want to end cancer as we know it.
And that is President Biden's tagline for this Moonshot, is, "Let's end cancer as we know it." Then we're going to have to get more and more patients into appropriate clinical trials. But to do that, we need to collect the data and make sure we're learning from everybody, making sure that clinical trials are thought of much in the same way that we thought of stop smoking, or get a colonoscopy, or do breast self exams. We need to make clinical trials participation and things like biomarker testing, national cancer campaign items, things at the top of the mind to educate patients, caregivers, doctors about, they can't be the afterthought any longer. They need to be at the front of the line in terms of what patients know about and what doctors talk about.

Dr. Katy Peters:
I completely agree with all of your wishlist. I'm with you. I think that's great. Back to point two about access. Recently we've had some challenges, as a practicing neuro-oncologist, about accessing those standard of care medicines. Methotrexate has been on a shortage, that's used to treat primary CNS lymphoma. Carboplatin used to treat a myriad of pediatric brain tumors, and lomustine that's used to treat glioblastoma and also lower grade gliomas. Was there discussions about the standard of care shortages and what is the National Brain Tumor Society doing to combat this?

David Arons:
It's an excellent point, Dr. Peters. The first point is, while we're trying to investigate promising cutting edge therapeutics, we have to realize that the brain tumor and cancer clinical trials infrastructure is highly dependent upon old off patent drugs, many of whom are either in shortage, or on the cusp of being in shortage, or that there's very few makers of these drugs anymore. Like lomustine for example, which is a backbone control arm drug, but is also part of standard of care for malignant brain cancer patients, has one US maker, and that maker dropped out of Medicare in 2022, is just recently back into Medicare in 2023. So this is a vulnerable situation for patients. Other drugs like you mentioned, these corticosteroids, also treatments like the platinum drugs, carboplatin and cisplatin, again been in and out of shortage. Vincristine a critical drug for pediatrics.
Our message at National Brain Tumor Society is, one, we need to make sure our country is on top of the shortage problem. The FDA as well as the NIH really need to do more to lean in and understand the nature of why there are these shortage problems. Is it due to contamination and supply? Is it a supply chain issue? Is it a problem with manufacturing? And much like we're trying to solve mass transit issues with trains more rapidly, we have to solve and have literally SWAT teams come in and help solve these supply chain and manufacturing issues with critical cancer drugs faster. It should be a mandate for Congress to work on this shortage problem.
But it's also not just the technical shortage, it's when we have situations like Lomustine, where for business reasons a company disrupts the supply of a critical drug. That drug wasn't in shortage, it was just the company made a business change. So we need to make sure that we have ways that if a sole source manufacturer of a critical lifesaving or life-preserving cancer drug decides to move out of the market, that the National Institutes of Health become a maker of drug of last resort, that they have the ability to swoop in and contract with a company or a drug maker to get supply going again, if there is a sole source supply disruption, it's much like oil supply or an energy supply disruption. We need the government to be a supplier and maker of last resort so that cancer patients do not go without something that is medically necessary, particularly vulnerable brain cancer patients. That is our message, we need to solve these shortages and disruptions much more smoothly than we have been.

Dr. Katy Peters:
I completely agree with you. I think what's unique for our brain tumor patients is that these shortages were not only occurring with the oncology drugs they were taking, but also the drugs that they use for really supportive care needs, like methylphenidate and Adderall. So it was coming to them from both ends, where they couldn't get their medicines. And we also worry about some of the brand name and some of the generic anti-epileptics. We're a neurology podcast and I'd love to know your thoughts about what's unique about the brain tumor patient and what they can do for their brain health.

David Arons:
Great question. When you think about a brain tumor, brain tumors are not one thing. There's actually around 120 different types of primary brain tumors or brain tumors that start in the brain. And then you have about five different cancers where cancer metastasizes to the brain. And so those are called secondary brain cancers or CNS metastasis. Brain cancer is a wide variety of diseases, everything from types of tumors that are benign. A patient may have surgery, they take out the tumor, and then they live the rest of their life quite normally to the most aggressive lethal brain cancers like glioblastoma, or some types of pediatric brain tumors like atypical rhabdoid tumors, ATRT, is one example. When we think of what's different about a brain tumor patient, it's not just a cancer that can take one's life or cause disability, it can steal one's sense of self, it can steal the mind.
And so in terms of brain health, brain tumor patients, depending on their diagnosis and depending on the manifestations of this disease, how it makes them think, feel and function, they're going to need a wide variety of services, from psychosocial to counseling, to types of palliative care, not just end of life palliative care, can start right at diagnosis to help suffering. And brain health could mean everything from drug therapy to counseling, but what's really important is for the public to understand that brain cancers, brain tumors are something different than other types of cancers because they can affect the mind, one's sense of self, one's relationships with family members, with their children, with their spouses, with their parents, and families need to be aware of that, of how behavioral change come into play. What's super key is to put together a care team that is beyond just traditional medical doctors, but think about holistically wellness as a concept of exercise diet, it could be yoga for example.
National Brain Tumor Society has a terrific Meditation Mondays program, where on staff one of our team members is a meditation expert and she leads patients through that, that helps with mental wellness. That we have support groups where it's so important that patients connect with each other and talk about their lived experience with a brain tumor. Because brain tumor patients often find that going to a general cancer support group is not specific enough to them. They want to talk with other brain tumor patients about issues like family life, about reproductive health, about sexuality, about spiritual health, all of these things that affect not only the mind and the body. Mental wellness broadly is a super important concept and National Brain Tumor Society is ready, willing, and able to help anyone think about the holistic care that they might seek in addition to cutting edge medical treatment.

Dr. Katy Peters:
And what I'm hearing from you is that the National Branch Tumor Society, in addition to being an advocate and raising funds and promoting research, you're really trying to build a community for our patients and their loved ones, and in addition to the patients and the loved ones, how can I become more engaged with the National Brain Tumor Society, what can I do?

David Arons:
There's so many ways to get involved and we try to make sure that volunteer engagement with National Brain Tumor Society is a win-win, that it's fulfilling for each and every volunteer and matches them with their skill sets and their interests. Anyone who wants to volunteer, there's a way to get involved, whether it's an advisory committee, whether it's becoming an advocate and going to Washington, or speaking to elected officials. We bring together 60 to 75,000 Americans together in regional events across the country to walk, race, ride, to commune, to have catharsis, to honor loved ones. There's so many ways and we're open and ready to talk to anyone about how they might like to get involved in our cause and be part of us, be part of this community.

Dr. Katy Peters:
I'm excited. I'm ready. Let's go. I feel like for us neuro-oncologists, we're always ready to have a discovery and have a foot forward. I now want you to use your crystal ball and think 10 years from now, what do you see for brain tumor research, for brain tumor outcomes, what is in our future?

David Arons:
What's in our future is really hope, but we also know that hope is not a strategy. What's been really interesting over the last five years are some profound changes that have gone on that are going to propel the next decade. One of the biggest changes is there's been two reclassifications of brain tumors that have helped the entire research field understand tumors better, they understand the cancers better because of the type of tumor it is. And so by understanding that better, it enables us to pinpoint drugs, therapies, devices, combinations that might work better for different types of brain cancer. And so compared to five years ago, what we're seeing now is more types of promising brain tumor treatments being evaluated now than even five years ago. The field is still trying to make immunotherapy work for brain tumors. That's been a real struggle, but we do see some promising and even exciting research being done in that area, particularly in oncolytic viruses and also CAR-T, which is chimeric antigen receptor T-cell therapy, those two areas seem like there's a lot of hope and they're gaining in traction.
There's also things like devices, for example, we've seen in the last couple of years the rise of focused ultrasound and being able to use focused ultrasound to both open the blood brain barrier and allow potentially therapeutic drugs to get into the brain tumor in the right concentration. We're also seeing focused ultrasound being used to treat brain tumors in a type of treatment being evaluated now called sonodynamic therapy, where a patient puts on a headset, drinks a drink to light up their brain tumors with fluorescence, called 5-ALA, and then there's the use of focused ultrasound to try to kill the brain tumor cells, that's another modality. We're also seeing a major repurposing in certain classes of drugs. For example, National Brain Tumor Society is leading a nine hospital consortium effort to evaluate drugs called DNA damage repair inhibitors.
These are a whole class of different types of drugs that inhibit or stop the ability of brain tumor cells from repairing their own DNA as a mechanism of growth. It's a way that we can use these drugs to stop brain tumor cells from healing themselves and growing, and a way to also make existing chemotherapy and radiation more effective. DNA damage response is now a drug class that we have high hopes for, and like litigator we're prosecuting those drugs to find out which ones could work and which ones don't. What we're also seeing is hope on the horizon and a real strategy is in clinical trials design. Again, five, six years ago we were talking about some of the same types of clinical trial designs, single arm and randomized trials, but now we're seeing, and this is what patients should care about is, we're seeing new types of designs of clinical trials that are more patient friendly.
The GBM AGILE clinical trial, for example, has one control arm, where patients get the standard of care but patients might be randomized based again on the characteristics of their tumor, their biomarkers, to any one of five different investigational drugs. This is a new type of adaptive design trial. The FDA is also being very supportive of fashioning trials that utilize the data from past clinical trials to bring that data forward to use to compare with a prospective clinical trial. What this does is it helps enable clinical trials to occur, but make sure that every patient has more of a chance of being on a drug that might work for them, so it's more patient sensitive. We're seeing biopharmas, hospitals like Duke, MD Anderson, Dana-Farber, all these leading cancer hospitals work together, as well as the FDA, to try to innovate clinical trial design. We expect in certainly two, five and of course 10 years to see highly modernized clinical trials, more targeted therapies better able to hit the cancer at the right time for the right patient, and then a rise in technologies, less invasive technologies that will enable both drug delivery and the treatment of brain tumors.
And we'll see an explosion in medical devices with the capability of treatment. Like I mentioned, we just saw in the last five years the Optune device or tumor treating fields come online for glioblastoma patients. We would expect to see more things like that and hopefully even better in the next five to 10 years. So it's both biology, engineering, physics, math, all coming together to make sure we're advancing medical research for brain tumors. And we think we're at a tipping point in brain tumor and brain cancer research to be able to discover transformative treatments and really and truly extend survival times and dramatically improve quality of life, which is what patients want.

Dr. Katy Peters:
Thank you so much for sharing all that and I'm hopeful. I want to thank you again, David Arons, this is a wonderful CEO of National Brain Tumor Society. I want to thank all of our wonderful listeners. Definitely check out the website for National Brain Tumor Society if you want to be an advocate, if you're a patient, if you're a caregiver, if you're a researcher or a provider, check out their website and see how you can also be part of the cure. Thank you so much.

David Arons:
Thank you. Really appreciate you and everyone here at Brain & Life.

Dr. Katy Peters:
Did you know the Brain and Life is also a magazine? Sign up for your free subscription and receive an issue in your mailbox every other month. Get inspired by news and stories not found anywhere else by visiting brainandlife.org/subscribe to start receiving your free copy. This offer applies to anyone residing in the United States. And if you don't live in the US, you can still enjoy Brain & Life online at brainandlife.org.
Thank you for joining us. I am Dr. Katy Peters, and I'm honored to introduce our medical expert, Dr. Vinay Puduvalli, who will be discussing brain tumors, from basic facts to future innovations. Dr. Puduvalli is a professor and chair within the Department of Neuro-Oncology at MD Anderson Cancer Center. He is actively involved in patient care, clinical trials, basic and translational science laboratory interests. His clinical effort is directed towards developing novel therapies for patients with primary brain tumors, specifically ones with malignant gliomas such as glioblastoma. He is the principal investigator of several clinical trials directed towards or against these tumors. His clinical and laboratory research interests focus on the fields of epigenetics and apoptosis, and this context he has been leading several clinical trials of epigenetic therapies. Another thing about Dr. Puduvalli is he is very active in the Society of Neuro-Oncology, and we are delighted to have him here today. Dr. Puduvalli, welcome.

Dr. Vinay Puduvalli:
Thank you so much, Dr. Peters, for that really nice, warm introduction. Happy to be here.

Dr. Katy Peters:
Thank you. And for our listeners, can you just tell us briefly what are brain tumors?

Dr. Vinay Puduvalli:
Absolutely. Brain tumors are growths that happen within the brain coming from cells within the brain that are somehow apparent, during their growth something alters that change then leads to an uncontrolled growth that result in a mass. And that mass then causes symptoms that leads to the detection. So most what we call primary brain tumors grow within the brain as elements of abnormal growth factors and other things bring into the mix causing these masses to form in the brain.

Dr. Katy Peters:
And what are the environmental risk factors, or is it in my genetics? Did I inherit this from my parents? Essentially, how do people get brain tumors?

Dr. Vinay Puduvalli:
The majority of brain tumors are not hereditary and not passed on from family member to family member. That's a concern that most of our patients have when they come in, but the majority of people do not have that issue. There's a small percentage of brain tumors that do have a hereditary characteristic where there may be a gene or a protein alteration in the body that then carries on from generation to generation, and hence can cause brain tumors to happen. Those typically show up with a family history and you can see that in the person's record, basically saying that parent or a family member that had that. Most often that already shows up in their history, but sometimes they may be the first person starting off the process and if there's anything unusual about the tumor that is characteristic of hereditary tumors to be good to test appropriately to see if that is...
Otherwise environmental risk factors, there are many that have been studied, some that rise to the question of concern that there are larger studies done, for example, number of big studies done on cell phone and brain tumors, but most of them in population studies did not show any definite evidence of association with the formation of brain tumors. There are some other categories, for example, firemen or people who work in fire departments, exposure to certain types of chemicals might trigger this. There have been associations with burnt bits and other chemical agents that have been used in war, and those associations have not been completely proven to cause brain tumors, but some of these, for example, have been under intense investigation. So we still have more to learn about external causes of brain tumors, but these are some of the factors.

Dr. Katy Peters:
Now, what about common symptoms that patients would present with? What should patients or their loved ones be worried about if they could potentially have a brain tumor?

Dr. Vinay Puduvalli:
Brain tumors being masses that grow within the closed cavity of the head cause mainly symptoms from pressure, which can be headaches, nausea, vomiting, but it can also be pressure on functional areas of the brain, which can cause weakness, or speech problems, or memory problems, seizures. Those are all common symptoms. It's very important to realize that just because you have a headache doesn't mean you have a brain tumor, that there are so many other causes, but specific types of symptoms where early morning headaches associated with nausea and vomiting and other neurologic symptoms. These may be some of the things that often lead patients to go to the hospital and get diagnosed.

Dr. Katy Peters:
And how do they get diagnosed?

Dr. Vinay Puduvalli:
The first point of entry when people end up, for example in the emergency room or the doctor's office is a neurologic exam that often may show things that may be wrong. For example, a deficit in the neurologic exam might suggest where this problem may be coming from, based on appropriate imaging such as MRI scans, which can show the anatomy of the brain in great detail, often reveal these tumors as masses that can be seen, dye given during an MRI scan can also show whether there is leakage of the dye within the tumor that can sometimes be indicated of a higher grade tumor. It can also rule out tumors and show other things such as bleeds or other non-tumor causes. In places where MRI scans are not accessible, people still often use CAT scans, which also show anatomic parts of the brain and then show us if there is any mass or pressure, which then can lead to additional testing.

Dr. Katy Peters:
And can you describe your role, because you're a neuro-oncologist and a neurologist, what do you do day-to-day to help your patients?

Dr. Vinay Puduvalli:
Neuro-oncologists are a unique blend of neurologists who then take on an oncology hat. They undergo special training to look at how chemotherapy can be given to be able to manage the effects and side effects of such treatment. But the fact that we have a neurology background allows us to also act as a neurologist for that patient, taking care of the neurologic symptoms, for example, seizures, taking care of the medications that are necessary for that, and to also monitor the patient carefully for changes that may happen. That blend allows us to specialize a bit more than the traditional oncologist or the neurologist and we hope deliver better care to our patients.
Often in the clinic, we are looking at these patients that come in with brain tumors. We are assessing the neurologic condition, looking to see what deficits they may have as in do they have weakness, vision loss, speech loss, try to figure out how to get those better. Even as we are addressing the tumor. If they have seizures, we look to see the medications that they may need or optimize those medications to control seizures in the future. Multiple ways to also take care of the quality of life of the patient even as we're trying to treat the tumor.

Dr. Katy Peters:
Now, I mentioned that you're the chair of Neuro-Oncology in MD Anderson Cancer Center, and you've also worked with organizations such as the National Brain Tumor Society, and I recently had the pleasure to interview their CEO, David Arons, could you elaborate really as your role as a leader and if you could reflect on how you've partnered with a National Brain Tumor Society?

Dr. Vinay Puduvalli:
In this field, you quickly realized that joining forces is key to success and what we have always tried to do is to form this community around which we can have our efforts synergized. Now, in the past it used to be medical communities, physicians and providers talk to each other, but it's been increasingly evident that that's not enough, that we have to include our patients, and that's where many of the organizations that we are talking about here become real forces of nature in terms of bringing that to our attention and shaping the way we think about medicine and taking care of patients. You've mentioned NBTS and David Arons as one of the examples of team that's spearheaded that aspect, patient advocacy. Not only is it spearheading and bringing the perspective that these organizations are bringing support to the research, that's key because some of the things that we try to do in a rare field where brain tumors being rare tumors, there is not enough funding flowing our way, it is crucial that the collection of information that we need to launch those bigger studies, that that needs to be gathered.
Most of the time we don't get funding for that, so patient advocacy groups are not only advocating for the patients and telling us what we need to know about what patients, we approve this, they're also helping us by generating support, gathering people together, getting the perspective, providing funding through research, and then just being the launchpad for a number of new things that are happening.

Dr. Katy Peters:
I love that idea of community that you just mentioned. I think it's so important, and I would say that our Brain & Life listeners are a community, it not only includes our patients but their loved ones and caregivers. Could you comment on the unique challenges that brain tumor caregiver has and what can we do to support our caregivers?

Dr. Vinay Puduvalli:
This is another aspect of our field that surprisingly took a long time for us to recognize, that the burden that comes from disease on a patient is not just the patients alone and that there's a whole group of people, the community, the family, the friends, that all contribute to their care, but also take the impact of that diagnosis and the journey that the patient's having. That recognition led to a lot of new areas of research as well as understanding what does the caregiver actually go through and how do we try to support them in this journey because that mutual support, supporting the caregiver, in order to support the patient becomes the equation.
I now walk into my clinic with many of my patients and after we are done with what the patient has to say and discuss the plans, it's not uncommon for me to look at the caregiver and say, "How are you doing?" Because that is an important part of the equation. Sometimes you don't ask the question, you don't actually understand what the implications of that care model for them are. So giving them an opportunity to be able to express that I think is really important and that can provide us additional dimensions of providing that support as well. Very important to take care of our caregivers and also connect them with resources that many of our institutions have that allows them to decompress and be able to help the patient better.

Dr. Katy Peters:
I completely agree with that and I love that approach. Talk to everyone in the room and get to know them and know that patient's journey. Thank you so much for joining us today, Dr. Puduvalli. This was very enlightening. We appreciate your time, your expertise, and your comments.

Dr. Vinay Puduvalli:
It's my pleasure and thank you for the opportunity and this is great to connect through you to all our patients as well.

Dr. Katy Peters:
And thank you listeners, have a lovely day. Goodbye.

Dr. Daniel Correa:
Thank you again for joining us today on the Brain & Life podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org. Don't forget about Brain & Life en Español.

Dr. Katy Peters:
Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainandlife.org and leave us a message at 612-928-6206.

Dr. Daniel Correa:
You can also find that information in our show notes and you can follow Katy, and me, and the Brain & Life magazine on many of your preferred social media channels.

Dr. Katy Peters:
And these episodes would not be possible without the Brain & Life podcast team.

Dr. Daniel Correa:
Including Nicole Lussier, our Senior Manager of Public Engagement.

Dr. Katy Peters:
Rachel Robertson, our Public Engagement Coordinator. And Twin Cities Sound, our audio editing partner.

Dr. Daniel Correa:
We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online @NeuroDrCorrea.

Dr. Katy Peters:
And Dr. Katy Peters joining you from Durham, North Carolina and online @KatyPetersMDPhD.

Dr. Daniel Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Katy Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Daniel Correa:
Before you start the next episode, we would appreciate if you could give us five stars and leave a review. This helps others find the Brain & Life podcast. See you next week.

Strength in Unity: Advocating and Advancing Research for Brain Tumors

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