Cancer patients, their families and medical teams rocked to the tunes of Texas legend Buddy Holly on Tuesday, as University Hospital dedicated its Adolescent and Young Adult Cancer Program.
The program – referred to as AYA – provides specialized care for cancer patients 15 to 39 years old. It includes the largest inpatient unit in Texas for AYAs, an age group that has seen its increased rate of survival lag behind that of younger children and older adults with cancer.
The soundtrack of nostalgic songs at the event reflected the commitment to advanced care by the Buddy Holly Educational Foundation and Teen Cancer America. Maria Elena Holly, the widow of the late musician posed with patients and hospital staff.
Teen Cancer America, founded by rock musicians Roger Daltrey and Pete Townshend of The Who, has donated $296,000 to the AYA program. It has enabled the hiring of a dedicated social worker, a nurse navigator and the creation of a lounge where patients can meet to share experiences and support.
George Hernández, president and CEO of University Health System, told a crowded room the mission of the program is devoted to improving outcomes for a group that has been “underserved, understudied, under helped.”
In a video produced by University Health System, 27-year old Rebecca Lopez now in remission, talked about the fear of dying and leaving her 3-year old son without a mother.
“People tell you all the time, I understand what you’re going through, I know how you feel. But unless you’ve gone through it, you don’t really know,” she said choking back tears.
AYA patient Paige Rodriguez, 20, told the San Antonio Express-News about the importance of having age-appropriate care. “We’re not exactly full-grown adults, but we’re not kids anymore,” she said.
Young people should not die from cancer
The AYA Program based at University Hospital is a partnership with UT Health San Antonio. It dates back to 2014, when oncologists specializing in the treatment of children with cancer, and those specializing in treating adults, put their heads together to brainstorm ways their teams could provide more individualized care for adolescent and young adult cancer patients in the University Healthcare System.
National Institutes of Health (NIH) data outline the need:
- Cancer is the leading cause of disease-related death for adolescents and young adults.
- The incidence of cancer in the AYA age group has increased steadily over the past 25 years
- AYA cancer patients are the most underrepresented age group in clinical trials, which is how the medical community gains information on improved treatments, and patients gain access to lifesaving therapies.
- Early diagnosis and treatment for AYAs is often hindered by limited health insurance coverage. Psychosocial challenges include fertility preservation, assistance with parenting and schooling; keeping a job; long-term side effects.
How we’re meeting the challenge
With their colleagues, Dr. Allison Grimes and Dr. Elizabeth Bowhay-Carnes set a process in motion that has resulted in the following:
- The largest inpatient AYA unit in Texas housed at University Hospital, and operated with partner UT Health. Its opening in December 2018 allows hospitalized AYA patients to be located in the same area as others their age where their care can be coordinated
- 150 new AYA cancer diagnosis through the program each year
- Development of an algorithm that assists providers in pairing AYAs with services that will best align them with clinical trials for which they might qualify
- Creation of a dedicated AYA Cancer Program team with Dr. Grimes and Dr. Bowhay-Carnes serving as co-directors. It currently includes pediatric and adult oncologists, two psychologists, a team of AYA dedicated inpatient oncology nurses and two positions funded through a grant from Teen Cancer America – an AYA social worker and AYA nurse navigator
- An AYA lounge where patients can socialize with each other, and combat the isolation they often feel
Dr. Grimes and Dr. Bowhay say options are being considered for expanding the inpatient unit and services, including the possible addition of an AYA recreational therapist, financial counselor, referral coordinator and program manager.
The program co-directors are surveying medical providers throughout South Texas to identify the top, unmet patient needs.
The program’s plans include:
- Implementing automated referrals for genetic counseling, fertility preservation and screening for clinical trials
- Developing outreach through social media
- Providing AYA-specific training for nurses and staff