Underserved cancer patients get their own space and medical team at San Antonio’s University Hospital.
AYA Cancer Program Co-Director Elizabeth Bowhay-Carnes, MD
AYA Cancer Program Co-Director Allison Grimes, MD
On a seventh-floor unit at University Hospital in San Antonio, a unique team of doctors and specialists caters to a group of cancer patients often left out of lifesaving clinical trials, needed counseling and financial programs that might assist with their care.
The patients, ages 15 to 39, are identified by the National Cancer Institute as adolescents and young adults, or AYA cancer patients. Because of their ages, they don’t easily fit into traditional pediatric or adult cancer programs.
The AYAs are fighting serious illness while struggling with generational challenges like finishing their education, beginning a family or starting a career.
In 2014, Allison Grimes, MD, MSCI, who specializes in treating children with cancer, and Elizabeth Bowhay-Carnes, MD, who specializes in treating adults, put their heads together to brainstorm ways their teams could provide more individualized care for AYAs.
Both physicians knew National Institutes of Health (NIH) data show that during the past few decades, the five-year survival rate of children and older adults with cancer had improved. The survival rate for adolescent and young adult patients with certain types of cancer, however, has actually lagged far behind. NIH describes this phenomenon as the AYA gap. Dr. Grimes and Dr. Bowhay-Carnes wanted to eliminate it.
“This was a population of patients that was most difficult to treat, and they are known to have the poorest outcomes. It’s the war we weren’t winning,” says Dr. Grimes, co-director of the hospital’s growing AYA Cancer Program, a partnership between University Health System and UT Health San Antonio. She is also Assistant Professor in Pediatric Hematology/Oncology at UT Health San Antonio.
“As a cancer care provider, this is absolutely heartbreaking to me. It is unacceptable,” says Dr. Bowhay-Carnes, co-director of the AYA Cancer Program at University Hospital and Assistant Professor of Medicine and Pediatrics at UT Health San Antonio. “Our goal as cancer care providers is to help people live longer and cure them if at all possible.”
With their colleagues, the two physicians set a process in motion that has resulted in the largest inpatient AYA program in Texas, housed at University Hospital.
The team began shaping the program by asking some basic questions: How many AYA patients are in the Health System? How are they arriving at the hospital? What is the best location for their care? Why are they falling through the cracks?
AYA Social Worker Diana Campa Del Rosario, hired with a grant from Teen Cancer America, visits with patient Ramona Powe in University Hospital’s AYA inpatient unit.
The Need for Access to Clinical Trials
One of the big takeaways was the lack of access to clinical trials.
“This age group is the most underrepresented in clinical trials, which is how we learn about the biological characteristics of diseases and tumors and how they interact. If we don’t have access to this age group for clinical trials, we don’t have access to that information,” Dr. Bowhay-Carnes says.
There is a direct correlation between the five-year survival rate of AYA cancer patients and the number who participate in clinical trials, she adds. The lower the participation in trials, the lower the survival rate.
The team discovered age is often a barrier to participation. Pediatric trials may have a cutoff age of 18, while adult cancer studies may not accept patients younger than 40 or 50 years old. When clinical trials are willing to accept enrollees outside the usual age ranges, AYA patients and their doctors often don’t know about the trials.
Dr. Grimes remembers a young woman in her 20s who was diagnosed with pre-B acute lymphoblastic leukemia, a common type of cancer in children. She qualified for a potentially lifesaving pediatric clinical trial available to patients as old as 30. However, because she was being treated in the adult program, her medical providers didn’t know that.
Aaron Sugalski, DO, visits with teen patient Victoria Brewer as she receives an infusion treatment in University Hospital’s AYA Outpatient Clinic.
Developing the AYA Cancer Program at University Hospital
To better match AYA patients with trials and other resources, the doctors and the AYA team have created a special algorithm.
It collects data about cancer patients entering treatment at various locations, then matches their profiles with clinical trials for which they might qualify. The team is collecting data to measure the success of the process over the program’s first five years, though they already know more of their patients are gaining access to the research studies.
The search for solutions also led to another realization. AYA patients were scattered among three different areas of the hospital, which made coordinating care and communication a big challenge.
That led to the new AYA inpatient unit that opened in December 2018 with eight full-time beds that can be expanded to 12.
“Now that they’re all in the same location, it helps our ability to screen patients for eligible clinical trials and consolidate services for these patients,” says Dr. Grimes.
Allison Grimes, MD, Director of the AYA Cancer Program at University Hospital, counsels patient Hussam Alsaffar in the AYA unit.
A National Donation and Specialized Care
Recently, Teen Cancer America awarded the AYA Cancer Program at University Hospital $296,000. It’s one of just 30 hospital grants provided by the nonprofit, which was started by rock musicians Roger Daltrey and Peter Townsend of The Who.
The donation is enabling the program to further develop services tailored to AYA needs with the hiring of a dedicated social worker and a nurse navigator. They join a specialized staff of oncologists, psychologists, nurses and research representatives gathered in one place, dedicated to improving the quality of life for AYAs, in addition to making them healthy.
Staff are helping patients with obstacles other age groups may not encounter. They talk with teachers and school officials to resolve delays in a patient’s education. They refer AYAs for mental and behavioral counseling, connect them with community services and identify financial resources to help cover their often-expensive treatments.
“Financial toxicity is a huge barrier that’s more commonplace for this age group,” Dr. Grimes says. “Young adults are also at higher risk of losing their insurance, especially if they have an employer-based plan. If they work fewer hours or lose their jobs as a result of their cancer care, they can lose their coverage.”
Then there’s the issue of how their cancer treatment might affect their ability to have children. Staff schedule patients for fertility counseling.
“Many teenagers and young adults have not begun to think about family planning,” Dr. Grimes says. “A cancer diagnosis forces that conversation or decision, or it should if it’s presented to the patient. That should be the standard of care — to inform patients if there is a risk for infertility.”
Teen Cancer America’s donation is also being used to create a patient lounge that will help fight another problem common among AYAs who may be hospitalized for weeks at a time — isolation and loneliness.
The lounge aims to provide a break from being sick with video games, a snack bar and access to movies and music. It will give patients a chance to share experiences with other young people facing the same challenges they face.
Aaron Sugalski, DO, examines patient Kimani McNeil in University Hospital’s AYA Outpatient Clinic.
Building the Future AYA Program
After five years of developing the program, the AYA team is seeing 150 new patients a year, some traveling from distant parts of the state. Team members meet once a month to discuss cases and to continue building the program.
“I have a grand vision,” Dr. Grimes says with a laugh. “Five to 10 years from now, I envision the unit to be more than double its current size.”
She wants to offer additional psychological and social counseling for patients and families, and partner with additional support groups and services. She foresees new AYA services outside the hospital, better curricula to train future physicians and an AYA community resource center.
Most importantly, Dr. Grimes and Dr. Bowhay-Carnes expect to see increased access and enrollment in clinical trials and a better survival rate for these cancer patients who are just beginning their adult lives.
Geary Lynn Delgado, RN, Patient Care Coordinator; Diana Campa Del Rosario, social worker; Krystal Robinson, psychologist; Natasha Pacilio, RN, Patient Care Coordinator; Alissa Love, RN, Executive Director Clinical Services
Please email firstname.lastname@example.org if you would like to make a referral, ask questions or learn more about the AYA Cancer Program at University Hospital.