Year 3. September 30. Advancing Health Equity.
This week, I want to focus on examples of efforts and faculty within our department who are LEADERS in our commitment to health equity.
Two Years In, Sickle Cell Disease Center Helps Patients Thrive
Sickle Cell Awareness Month is the perfect time to highlight the progress the UCLA Sickle Cell Disease Center has made since it opened around this time in 2022. The past two years has had many ups and downs but much learning that has improved our ability to best care for this patient population, particularly those who are contending with a complicated disease and socioeconomic hardship.
“Not only does these patients’ chronic illness affect their day-to-day life, but stressors also worsen chronic illness,” Amie S. Patel, DO, a sickle cell disease provider at the center, said. “Housing insecurity, challenges when you’re going to the ER or the hospital, difficulty making appointments — all of these things are added stressors that worsen their disease.”
Sickle cell disease is an inherited disorder that primarily affects individuals of African descent, though it occurs in members of the Hispanic American community and people of Middle Eastern, Asian, Mediterranean and Indian descent as well. A mutation in the gene that encodes the protein hemoglobin causes red blood cells to take on a “sickle” shape, leading them to clump together and block small blood cells throughout the body. This results in wide range of complications that affect every organ system, including severe anemia, jaundice, strokes and an extremely painful condition called a sickle cell crisis.
Treatments for sickle cell disease can help patients manage their disease and live mostly normal lives. We now live in a world where significant transformative therapies are available, such as bone marrow transplants and gene therapies. But many face barriers to accessing the therapies they need, including a fragmented healthcare landscape, systemic inequality that marginalizes communities of color, stigma that mislabels sickle cell patients as drug seekers and the fact that many healthcare providers do not accept Medicaid. The result of this is especially dire in California, where the average lifespans for patients with the condition are nearly 20 years shorter than the national average. Los Angeles has the largest number of people with sickle cell disease in the state.
The UCLA Sickle Cell Center was set up to ameliorate this problem by providing comprehensive care for people with sickle cell disease regardless of what type of insurance they have. It’s comprised of clinics in Redondo Beach, Santa Clarita downtown Los Angeles, and at the Bowyer Oncology Center in Westwood, where patients have access to comprehensive screening and management care. Bowyer provides patients with fluid hydration, transfusion therapy, and pain management seven days a week in order to avoid a hospitalization. About 200 people have been treated at the centers’ sites since they opened, including 140 patients who return on a routine basis. The center represents a collaboration involving multiple divisions within the DoM including hematology-oncology under the guidance of Gary Schiller, MD and Mary Sehl, MD, general internal medicine including Dr. Patel, Alice Kuo, MD, Max Jordan Tiako, MD, and others, addiction medicine including Maya Appley, MD, faculty in the hospital medicine section; and UCLA Health.
In addition to treating patients’ medical challenges, providers like Dr. Patel also try to treat their social ones. For example, if a patient is facing housing insecurity, she will make sure they are meeting with a UCLA Health social worker and are tuned in to community resources. She may also guide them to free resources for mental health, a crucial consideration for this population.
“We’re really trying to look at the whole person, not just their medical state, and make sure that everything else in their life is optimized and that they’re plugged in to the right resources,” she said. “And if they want us to call on their behalf, we help. We do what we can do to decrease some of the stressors in their lives.”
While the center would like to see more patients take part in clinical trials under the expertise of our highly respected hematologists, Dr. Patel and others recognize that many of them would first have to overcome a lifetime of mistrust in the health care system.
“There’s still a lot of hesitation, not just around clinical trials but around things that are approved but still new,” she said. “Some individuals have still have a lot of hesitation because of all the history and what they’ve experienced their whole lives with the medical system.” She noted that the center works with the UCLA Alpha Clinic and Clinical and Translational Science Institute to educate patients with sickle cell specifically about how the trial process works, an effort aimed at closing the gap between them and the medical system.
Dr. Patel anticipates more collaborations between the center and other divisions at UCLA. She also hopes to provide educational lectures to ER staff, hospitalists and the ICU regarding management of acute sickle cell disease complications. This will be especially prudent as the center expands and more people with the condition use other specialties within the DoM or in the ER.
So too will be recognition by clinicians of their own internal biases against sickle cell disease patients, particularly those who wind up in the hospital, Dr. Patel noted.
“I think much of the stigma around sickle cell disease may come from providers themselves, who see individuals with pretty severe disease who are suffering from extreme amounts of chronic pain and have a lot of things going on in their lives,” she said. “Those patients represent about 10% of the total patients that we see in our outpatient clinic.”
Contrary to what it may look like from the vantage point of the ER, many patients with sickle cell are flourishing, Dr. Patel added. They take their medications as directed and are doing relatively well in their quest to live their lives as normally as possible. If more patients get the comprehensive care and resources they need through places like the center, this could be the reality for far more of them.
“There is hope,” Dr. Patel said.
We appreciate the work that the Sickle Cell Disease Center is doing for providing people with sickle cell disease the full spectrum of care they need to help them live better, longer lives. Their work is a model for others in California and beyond.
Recognizing Bias in Treating Sickle Cell Disease Patients
Earlier this month, the UCLA Department of Medicine welcomed Cincinnati Children’s Hospital researcher Lori Crosby, PsyD for a special Grand Rounds presentation on recognizing and addressing implicit bias when caring for people with sickle cell disease. Dr. Crosby challenged us to think about how our own subconscious prejudice might influence the way we treat this patient population and offered solutions for shifting our perspective.
As she explained in her presentation, patients with sickle cell disease are frequently labeled as “difficult.” This scarlet letter stems from the convergence of the cultural, political, sociological and psychological conditions that affect the population that is impacted the most by sickle disease — racially and ethnically minoritized patients, many of whom are low income. Doctors historically have blamed them for their own suffering, ignoring the obstacles to care that are unique to this patient population.
The racial stress and racial trauma often experienced by this patient population can manifest as mistrust in the medical system; emotional dysregulation; defensive language and code-switching; with different patients reacting in different ways. Dr. Crosby encouraged us to rethink our assumptions about these behaviors and to set aside our biases by practicing self-awareness and cultural humility, including accepting the fact that even if we have good intentions, the impact of our actions may cause harm.
For clinicians, Dr. Crosby offered a four-part strategy titled Observe, Pause, Consider, Unpack, or OPCU. In practice, this might look like observing that a patient is refusing to answer questions, pausing, considering whether her behavior is rooted in concerns about judgement or fear, and then unpacking your own reaction. The “unpacking” portion suggests thinking about ways you can validate or acknowledge the factors you’re considering, such as opening the conversation to talk about their experience.
Dr. Crosby expanded the application of this idea to communications within the medical team. For instance, calling a patient “non-compliant” places the blame on the patient for not taking their medication. A more accurate term would be “non-adherent,” as this opens up room for considering complex contributors, such as racial trauma, to their behavior. Furthermore, if the medical team describes the patient’s history of substance use as “problematic,” the underlying message is that the patient is a drug-seeker — a dehumanizing term void of context. The medical provider could instead acknowledge that the patient has had a difficult life, and that coping has worked for them in the past.
Other strategies Dr. Crosby suggested included authentic communication with patients, building relationships on a foundation of curiosity and partnership, giving them the benefit of the doubt and striving to provide the best care possible. She also described the benefits of an equity-empowered system of care for sickle cell disease patients, one that centers on their experience, that emphasizes addressing root causes, and that shares power by establishing equitable-decision making. Such a framework offers trauma- and bias-reducing care, amplifies patients’ lived experience, names root causes without apology and promotes economic equity.
Dr. Crosby’s actionable insights are invaluable to those of us who care for sickle cell disease patients and for diverse populations more broadly. Her work reminds us that transforming patient care is about much more than new technologies and novel drugs — it is about confronting our own internal biases so we can deliver more effective, compassionate care. If each of us puts her ideas into practice, we have the power to change the system as a whole.
DoM Women Move Medicine Forward
The DoM is filled with phenomenal women LEADERS — so many, in fact, that it would take us years to recognize them all! In honor of Women in Medicine Month, we would like to highlight the work of four women who are shaping the future of health care at UCLA and beyond.
Kaitlyn Fruin, MD
First, I would like to introduce you to Kaitlyn Fruin, MD, a preventative medicine fellow who is bringing the adage “food is medicine” to life for vulnerable patients. While Dr. Fruin is known at UCLA for her work leading volunteer projects and spearheading a fundraising campaign to restore the Veteran’s Garden at the VA, her mission to improve nutrition in low-income communities began while she was in medical school in Chicago. There she was involved with VeggieRx, a program in which clinicians “prescribe” fresh fruits and vegetables from a local urban farm to people with diet-related diseases like obesity and diabetes, many of whom are also experiencing food insecurity. The strategy seems to be working: Participants had significantly reduced BMIs and weights compared to matched controls from the same health system, as a recent article in the New England Journal of Medicine co-authored by Fruin described.
“This is exciting because while anti-obesity medications can cost $1,000 per month, community agriculture investments that create employment and produce access are relatively far less expensive and can play an important role in preventing weight gain and stimulating the local economy in high poverty communities,” Dr. Fruin said.
Dr. Fruin hopes to soon apply what she learned from VeggieRx to the Veteran’s Garden. The garden will operate a similar “farmacy” where patients can redeem food vouchers given to them by clinicians. At 15 acres, it’s the largest farm located on a medical campus in the nation — and could thus serve as a model for how to integrate the food and health systems all over the country.
“My hope is that all patients will have access to the fresh fruits and vegetables, and not just medications, that they need to prevent and treat disease,” she said.
Dr. Fruin’s journey into medicine was inspired in part by her mother, who wanted to become a physician herself when she was growing up in Uganda but was forced down a different path out of financial necessity. To Dr. Fruin, her mother’s story demonstrates how even the most intelligent, most passionate healers can be locked out of the profession or go unrecognized, something she has seen time and time again in her work on community projects. These individuals are often the true health leaders of their communities and know their needs best, she said.
“As physicians, we can all work to advocate for stronger pipeline programming, so our trainees reflect the communities we serve, and to support our community partners in accessing the platforms and funding they need to sustain their life-saving community-based work,” Dr. Fruin said.
Dr. Fruin encourages women who are just embarking on their medical careers to seek out environments where they feel most connected with their patients. She noted that she had the opportunity to learn from healers at the gang rehabilitation and re-entry program Homeboy Industries — which presented at Grand Rounds on Sept. 12 — and is particularly inspired by a quote from its founder, Fr. Greg Boyle: “If you go to the margins to fix or rescue or save then it’s about you and you will burn out. If you go to the margins to connect, you will be eternally replenished because my joy is your joy, and your joy is my joy.”
“Fr. Greg gets at the heart of joy in medicine — the incredible connection we get to experience with our patients, our communities, our peers and our clinical teams,” she said. “Following where you find you are most able to connect with your patients will guide you to where in medicine you will find your joy, your friends, your mentors, and your why.”
Estelle Everett, MD
Next, we shine the spotlight on Estelle M. Everett, MD, an endocrinologist, assistant professor and health services researcher who studies how to address disparities in diabetes management and outcomes. Dr. Everett is the daughter of Haitian immigrants who stressed education despite never having attended college themselves. She was drawn to science not because it was easy, but because it was hard.
“I developed an interest in biology because it was the first class that really challenged me and made me work for my A,” she recalled. After graduating from Cal State Northridge with a degree in biology, she attended UCLA for medical school and Johns Hopkins Bayview Medical Center for residency in internal medicine. It was around that time she became interested in health services research — though the seeds had been planted long before.
“My little sister was diagnosed with type 1 diabetes at the age of eight, and from her experience I learned two things: One, that our healthcare system can be ineffective, and that two, there are many disparities in the way that patients with diabetes are managed,” Dr. Everett said. Her sister was not offered an insulin pump or continuous glucose monitor (CGM) for most of her life, despite the fact that this was the standard of care for type 1 diabetes management. Later research suggested she wasn’t alone.
“These studies showed that there were huge disparities in who has access to technology; and patients who are of lower socioeconomic status or who are racial or ethnic minorities were less likely to use insulin pumps,” she said. “What’s most concerning about this is that these are the same populations that have worse outcomes with type 1 diabetes. For me, this was unjust and unacceptable, so I decided to focus my research career on addressing these disparities.”
After completing a fellowship in endocrinology at Johns Hopkins University, where she earned a master’s degree in clinical investigation and a certificate in quality, safety and outcomes research, Dr. Everett joined the UCLA faculty in 2019. She is the principal investigator of many research studies exploring disparities in diabetes technology use, including a research project that aims to document the obstacles that keep insured but low-income and under-resourced patients with diabetes from accessing technologies like CGMs.
“Every day in clinic, I see patients with very poorly controlled diabetes and consequently with the complications of diabetes, including kidney failure, blindness, amputations — the list goes on and on,” she said. “This is troubling because these complications are preventable! They wouldn’t have these complications if we were to deliver care in a way that was effective for them.”
Practicing medicine inspires Dr. Everett’s research because she can bear witness to patients’ challenges up close, enabling her to ask the right research questions and come up with innovative ways to solve problems. Similarly, being a Black woman in medicine has given her first-hand experience of the same kinds of struggles some of her patients face when it comes to experiencing health disparities and bias.
“I’m more in tune with my patients’ needs and can really relate to them, and I think that benefits our relationship and their overall health,” Dr. Everett said. She believes diversity makes academic medicine healthier as well.
“I am a strong believer that an environment with a wide range of perspectives is always superior,” she said. “Having different viewpoints is more conducive to rich discussions, allows for better decision-making and results for everyone.”
For Black and other diverse women who hope to follow in her footsteps, Dr. Everett has some sage advice: Believe in yourself.
“I want the next generation of diverse women in medicine to know that although imposter syndrome is real, remember that you are intelligent. You deserve to be here. You made it this far,” she said. “As long as you remain resilient, you can achieve all your goals.”
On a personal note, I first met Estelle when she was an endocrine fellow at Johns Hopkins and participated in a career development program that I still lead. I recall her asking my advice on her offer letter to join the faculty at UCLA and it is amazing that things have now come full circle, now that we are now members of the same department!
Arpana Church, PhD
Next up is Arpana Church, PhD, co-director of the UCLA Goodman-Luskin Microbiome Center. Dr. Church has devoted her career to solving a mystery that has fascinated her since she was a child growing up in Zambia: Why do different people respond to stress in different ways?
“Zambia has a long history of apartheid discrimination, and even to this day, we don’t have resources like appropriate healthcare. Food insecurity was a big deal,” she recalled. “I grew up seeing some people who managed these stressful situations well and really flourished, and others didn’t do as well and were plagued by various disorders and symptoms. That made me wonder, what is it about us humans that either protects us against stress and adversity or leads to these negative effects?”
Dr. Church chased her question into academic medicine. After she obtained a PhD in psychology and completed a clinical fellowship at Massachusetts General Hospital/Harvard Medical School, she began to take a “systems biology” approach to studying the many factors that shape our behavior— in other words, a focus on the way things like race, the gut microbiome, inflammation, and the surrounding environment all interact to manifest in behavior.
Today, Dr. Church has plentiful resources to satisfy the longstanding curiosity shaped by her childhood. She collaborates with experts from a wide range of disciplines at the Goodman-Luskin Microbiome Center, where she is currently leading several projects on the gut-brain connection. These include a clinical trial on the anti-obesity effects of a proprietary probiotic supplement she and her colleague Tien Dong, MD, PhD developed in-house, as well as a study on the preventive impact of plant compounds called polyphenols on Alzheimer’s disease development. For the latter project — titled “Microbiota mediated flavonoid metabolites for cognitive health,” or MAEVE — Dr. Church secured a $9.5 million multi-principal investigator grant from the National Institutes of Health and partner agencies in Europe. The project includes co-investigators from UCLA, Duke University, University of Ulster and University College Cork.
“The Goodman-Luskin Center is a goldmine of resources,” Dr. Church said. “We have endless expertise and opportunities. I really believe that good science is not only driven by curiosity, but amazing collaboration. We’re so lucky that we have all these resources and expertise available to us. We are the only microbiome center that applies this integrated and translational approach.”
While she has experienced feelings of isolation and invisibility as a woman of color and an immigrant in academic medicine, Dr. Church appreciates her diverse background for the unique lens it affords her. Being a woman has taught her to use obstacles as opportunities — and growing up in a culture where female feticide occurred, ignited her drive to succeed.
“I come from a society where female children were not really desired, where being a woman is considered a burden and a disadvantage,” she said. “It can be a very oppressive and paternalistic society. I’ve used that to drive my passion for this work, and I think it has helped me flip the script.”
Dr. Church encouraged women who hope to follow in her footsteps to be resilient, creative, follow your passion, and surround yourself with people who support your vision, like the Chief of the Division of Digestive Diseases Eric Esrailian, MD, who has supported her career and provided her with a platform to succeed.
“Look for opportunities, no matter how small. If the door closes, look for a cracked open window,” she said. “Find people who have your back. If no one has your back, move it. You can’t do this work alone. And most importantly, pay it forward, someone similar to you may need a helping hand or just for you to notice them.”
Cathy Rujanuruks
The success of our remarkable clinicians and investigators in the DoM would not be possible without the expertise and dedication of members of our administrative teams, such as Cathy Rujanuruks. She climbed her way up from a work-study job to become one of our department’s LEADERS as director of research administration.
“I kind of wish I had the knowledge to actually conduct research or practice medicine, but I don’t. So I do the thing I can do, which is alleviate the administrative burden on the faculty so they can do their research,” Rujanuruks said. “UCLA is known for its great research, and I’m proud. When someone asks me what I do, the first thing I tell them is that I work for the UCLA Department of Medicine.”
Rujanuruks’ career began while she was still a student at UCLA, when she would complete her daily tasks at her work-study job in a research administrative office by asking, “Do you have anything else for me?” Her boss at the time offered to show her how to do purchasing, then later paired her up with a research administrator so she could learn the job in detail. Rujanuruks took on a full-time job as a purchaser in the office after graduating and was soon promoted to fund manager.
After several years in that role, she tried out a job as a management services officer (MSO), during which she began creating what she described as “how-to” documents for tasks she didn’t often repeat. She was contemplating the next step in her career when Raellen Man, who was director of research administration in the DoM at the time, reached out to her with an idea.
“I had shared my documents with her, and she asked if I wanted to work with her and start a training program for fund management,” Rujanuruks recalled. Under Man and Rujanuruks, the initiative grew to become an official program that’s offered to all research administration departments at UCLA as well as some at UC Irvine. Their office in the DoM flourished as well, expanding from just the two of them to 27 people including “floater” research administrators who move between departments as needed. The team assists with DoM clinical trial support, conducts trainings, oversees compliance efforts, provides mentorship, act as a liaison between the department and central offices on campus and much more.
“I know this focus is on women in medicine, but really it’s the team behind me — women and men — who make us strong overall,” Rujanuruks said. That said, women have played a crucial role in helping her up the ladder and making her successful at her work, including next-generation DoM LEADERS like Kayla Brown.
“It’s been a long generation of women in my career that have mentored me and that I’ve learned from,” she said.
Rujanuruks noted that when she started her work-study job, she never anticipated that it would lead to a career. She believes that doing her best was the key to finding both passion and success.
“Research administration isn’t for everybody, but personally, I find it very rewarding,” she said. “When I got into it, even though I didn’t know what it was all about at the time, I grew to love it.”
I hope that you are as inspired as I am by all the women LEADERS in our department.
Dale
P.S.
I was deeply moved by the Grand Rounds presented by members of Homeboy Industries. My daughter does similar work in Chicago.
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