Conversations in Clinical Research – Dr. Diana Castro

myTomorrows Team 16 Mar 2023

11 mins read

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Pediatric neurologist Dr. Diana Castro is the Founder and Director of the Neurology and Neuromuscular Care Center as well as the Neurology Rare Disease Center. The former is a non-profit private clinic, and the latter a for-profit research center that together operates as a hybridized healthcare facility. Dr. Castro’s novel approach to patient care and research is illuminating inventive ways that medical practices can better serve underrepresented communities and patients with unmet medical needs.

Fittingly, our interview starts as Dr. Castro practices medicine – inclusively and intuitively. Research coordinator, Jennifer Avelar, and practice manager, Siera Grano, happen to be around and Dr. Castro spontaneously invites them to join the conversation. Together they share their experience of building an impactful research-supported family practice that places emphasis on providing individualized, community-based care.

Advances in drug development require innovation in practice

Dr. Castro’s approach is interesting in that she provides specialist care, within a family practice setting, to both pediatric and adult patients with neuromuscular conditions. As a hospital-based physician, she noticed that pediatric patients with neuromuscular diseases (NMD) approaching adulthood were being transferred to adult neurology services with woefully inadequate, or completely absent transition of care. Dr. Castro saw the despair of patients and their families as they went from the care of devoted pediatric neurologists they had known and trusted all their lives, to very differently qualified adult neurologists who had scant experience with their disease.

“I felt myself losing meaning,” she said. “We were doing all this beautiful work until the age of 21 then sending the patients and their families out into a system with non-existent support. I just thought that was wrong.”

She adds, “I tried to work within the university to come up with a transition of care framework but it’s hard as you cannot control a whole hospital or even the whole private care system.”

The improvements in health span for pediatric NMD patients – made possible by advances in developing NMD therapies – were now being negatively impacted by survival into adulthood. This surreal systemic disconnect inspired Dr. Castro’s idea to start a neuromuscular practice combined with a research center to deliver much-needed continuity of care.

“The only way I saw to control things was to do it myself. So, I decided to start keeping our pediatric patients with us for the rest of their lives and not failing them as adults,” she said.

Extending equitable care beyond the hospital to the community

Change is a journey. Dr. Castro’s own professional path from medical school in Colombia to pediatrics residency in New York through to neuromuscular medicine specialization in Dallas has made her adept at navigating change. After 10 years at UT Southwestern Medical Center, she left behind the familiarity of hospital-based practice and research, setting out to try to do things differently and more efficiently.

“We need to have rules, but the system can become so big and so complicated that we forget why it is we’re doing all of this,” Dr. Castro said. “When the steps take so long, they end up limiting access.”

She continues, “Having our own place where we determine how things move and how fast they get done has opened up possibilities for patients.”

Siera Grano, the practice manager, then provides an explanation of how they have implemented a system designed to offer patients possibilities. It starts with having the non-profit clinic modeled after a family practice meaning that they can see patients of any age. As part of her specialization in pediatric neuromuscular medicine, Dr. Castro was also trained in the care of adult patients. U.S. regulations do not restrict her to specific age ranges as they may sometimes do for other healthcare professionals such as specialist nurse practitioners.

The non-profit clinic uses a sliding scale system to equitably handle healthcare costs. It considers the patient and their family’s income level and is updated annually. Patients who fall within a certain range of the poverty guidelines receive assistance, with those below the poverty line receiving free care. The clinic also works with charitable foundations to help sponsor care for those who may struggle to afford it. Being small, and intending to stay that way, allows the clinic more flexibility than large hospitals and they are able to find solutions for patients on a case-by-case basis.

No one is denied care as Ms. Grano explains, “You can pay, you can’t pay…we’re going to see you. It’s the last thing that families with neuromuscular conditions need to be worrying about. They have enough on their plates.”

Placing clinical trials in family practice to foster trust and participation

Neuromuscular diseases are often rare, complex, and lacking in effective treatment options. For these reasons, research and participation in clinical trials are a key part of care. On this topic, Dr. Castro has a foundational philosophy: “I think you have to have a relationship with patients to talk about research. For you or your child, you need a trusting relationship with your physician to say, ‘Yes I want to participate.’”

She adds, “If you have that relationship and trust you’re going to be more successful in the research protocol than if you don’t have that attachment.”

Dr. Castro then explains that having her clinic and research center directly connected builds trust, identifies eligible patients, and allows her to support families who do not have coverage with resources such as access to a cardiology service and advanced imaging studies.

Before joining the clinic as a research coordinator, Jennifer Avelar had run clinical trials at large academic centers. Comparing that setting to the clinic she says: “I have gotten to know these families more in detail which is very nice because I don’t need to be out of the room in 15 minutes. The difference is that also we’re not just seeing our patients as a subject number, they’re not just a zero-one.”

Circling back to the topic of coverage Ms. Avelar shares: “We have patients without insurance who aren’t afraid to come. Being a first-generation immigrant, I have memories of my parents being afraid to go anywhere near a hospital. That was an issue, right? And now I see these patients come in with the biggest smiles. Even my research patients would never come in that happy to see me. So it’s very nice to have somebody be excited to actually see me this time.”

Dr. Castro expands on building trust in communities that were previously at the margins of society. She relates it to her own story: “I’m from South America. Jen is from Central America as well. And we see these families that don’t trust the system. They don’t trust the medical system and the research system.”

They have yet to coin a specific term for their model of bringing research into the community, but it is clear when speaking to Dr. Castro’s team that they are deeply thoughtful about how to support patients participating in research. In their view, clinical trials are an extension of care and a valuable opportunity to access treatments that have the potential to make patients’ lives, and those of their families, better.

People are trying to figure out a way to do medicine the way it was intended. We should be thinking about the patient first.

Sharing experiences to inform, inspire, and multiply impact

Dr. Castro’s practice started seeing patients in November 2022. Since then, they have activated and enrolled two studies and have seven studies in the pipeline. She points out that it took her team just three months to activate these studies whereas in larger centers it can sometimes take 12 to 18 months. The studies are for several different neuromuscular diseases including spinal muscular atrophy (SMA) and Duchenne muscular dystrophy (DMD). In terms of design and population, both double-blind and open-label trials are actively enrolling patients from the age of two through to 50-year-olds.

Dr. Castro is not aware of other practices using her hybrid model of having a non-profit private clinic sustained by a for-profit research center. This meant that starting out she had to educate herself on everything from refrigeration standards to regulatory processes. Four (or five?) fridges later, the research center is up and running and attracting clinical trial sponsors.

Dr. Castro is reluctant to be labelled a pioneer, but her successes and missteps both hold valuable lessons for other physicians, particularly those caring for patients with NMD.

“I have had many pediatric-trained physicians reaching out to ask what I am doing and how I am doing it,” Dr. Castro said. “People are trying to figure out a way to do medicine the way it was intended. We should be thinking about the patient first.”

Dr. Castro adds, “I really would love to be able to talk to more people about the experience. It’s a learning opportunity to show physicians, residents, and medical students that we can do it. We can do it a different way. You can be a good doctor outside of the academic system.”

“As my husband says, ‘People don’t come to see you because you have a title from university X, they come to see you.’”

Asked where her inspiration comes from Dr. Castro credits her family and husband saying:

“As a woman and an immigrant, you put your head down, you work, and you don’t see what’s going on around. My husband was my eyes the whole time and he could see I was not happy,” she explained.

“One day he asked me what my dream was, and I said it was to have a clinical practice and a research practice. He said, ‘You can do it. Let’s do it.’”

I really would love to be able to talk to more people about the experience. We can do it a different way. You can be a good doctor outside of the academic system.

Overcoming challenges to access through relationship-building

When asked about her relationship with trial sponsors, Dr. Castro credits colleagues from the biopharma industry while explaining that her understanding of them and their role has evolved over the course of her career.

“I first came to the U.S. 20 years ago. Back then I heard “you don’t talk to pharma”, but as I got more into research, I started meeting these people – not the company – the people doing their job as best they could because they have a passion. They really, really have a passion to help.

And if you ask, many have a good reason or histories even, like someone in their family has the disease. Without these people, without pharma, medicine wouldn’t have been able to advance to a point right now where we have three medications for something like SMA.”

There are of course massive disparities in access to these advances and Dr. Castro is quick to acknowledge the context in which her efforts to help patients have been successful.

“I wish it was possible for patients all over the world and it wasn’t just in our bubble. When I give talks in South America the first thing I do is apologize and say I know that I come from a bubble where we have everything.”

Having everything is no guarantee of care reaching everyone, and inside “the bubble” Dr. Castro’s team is still facing and fighting a number of challenges. A major issue they have encountered is difficulty obtaining support from larger medical facilities for imaging and other procedures necessary for clinical trials. These facilities are structured around the traditional insurance coverage model, and it is taking time for them to understand and accommodate Dr. Castro’s research-supported model. Ms. Avelar highlights building relationships with individuals within these facilities as the key to addressing this challenge.

On the challenge of enrolling patients in clinical trials, Dr. Castro again calls out the value of having an individualized approach built on the strong relationships she has with her patients.

“Ever since I started practicing, I’ve created these different lists of patients. When I attend conferences, I take my notes and think about which patients will fit into which trial. So if Jen asked now who I have in mind for a specific one, I can name 10 patients right away because I have identified them over the years.”

“You also do that work ahead of time and talk to patients about research,” she explains. “They want to hear about opportunities and trials that are available. And it is my responsibility to give them this information.”

This note of responsibility echoes through all that Dr. Castro has shared in our interview as well as the Neurology and Neuromuscular Care Center’s hybrid approach to providing continuity of care for NMD patients. Her experience holds valuable lessons for clinicians, researchers and trial coordinators caring for patients with unmet medical need.

myTomorrows is proud to provide a platform that connects their efforts and enables better earlier access to treatment options. Learn more here.

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Physician InterviewNMDMuscular Dystrophy

myTomorrows Team 16 Mar 2023

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