Ariel Alexander, a rural Texas native, said that her advanced idiopathic Scoliosis treatment as a teenager led to unexpected out-of-pocket costs for her family.
Alexander, a Carleton College pre-med student in Northfield, said that there was a Charleston brace available for scoliosis. However, we were required to pay all the costs ourselves as it wasn’t covered by insurance. Alexander believes it was those early interactions with researchers and doctors that fuelled her interest in health care.
Alexander plans to go to medical school and become a pediatric oncologist. She assisted researchers in Alabama this summer with a study that examined how financial barriers can affect children with cancer and their families at the end of a child’s life. Alex received a $5,000 stipend from the Lemonade Stand Foundation to help her pay for her internship.
The research
Alexander was a researcher at the University of Alabama’s Institute for Cancer Outcomes and Survivorship. He studied financial barriers, also known as “financial toxicity”, and how they impact children with cancer and their families. Alexander collaborated with Dr. Emily Johnston at the University of Alabama at Birmingham to conduct this research.
Johnston is a pediatric surgeon who focuses on ending of life care and disparities for children with cancer. Her goal was to create quality measures for care and then to use these measures to identify and reduce disparities.
Johnston stated that if Johnston doesn’t know what high-quality care is, it would be difficult to tell who’s receiving it.
Alexander reviewed interviews with families that had lost someone in Alabama or California.
Alexander reviewed the transcripts of interviews and divided the financial toxicity issues into various themes. Johnston then developed 16 measures for quality end-of life care for children with cancer.
Alexander stated that there were many families with basic needs that were only exacerbated by their treatment. Alexander said that there were many issues regarding transportation, housing, food and, then, there were the medical costs parents discussed about.
Researchers stated that they are looking for mitigation measures to reduce these barriers.
Alexander stated that it is important to determine what went wrong, what the difficulties were during their child’s death and bereavement and then also what went well and what went well.”
The focus on Hispanic and Black families
The study’s main focus, which is what makes it unique, was to investigate the experiences of Hispanic and Black families.
Johnston stated that “we show time and again that underrepresented minorities suffer worse health outcomes, and it seems like in many cases they have poorer quality end-(of-)-life care.”
Alexander stated that Alabama’s participants comprised approximately 50% Black families and California’s participants around half were Hispanic. There were 48 children and 55 parents who had lost their child.
She said that financial toxicity at the end of life for children with cancer, particularly for rural families and underrepresented groups, is a neglected area. It is crucial to be able increase research and knowledge in this area.
Alexander stated that it is important to research the financial barriers and their impact on underrepresented communities. It is also important to have people in the research who are representative of those communities. Alexander said that although the research did not compare the experiences of Black and Hispanic families with white families, it was a good starting point to increase the voices of those communities.
Alexander, who is bi-racial and identifies herself as a Black woman, believes that having more providers with the same characteristics as her would have been a benefit when she was a child. She said that having this voice in research gives her a different perspective.
span style=”font weight: 400 I know that there were times when doctors were women of color. This made me feel more at ease. I felt more heard. She said that she felt more heard in these situations.
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