Chronic Conditions: America’s Silent Struggle
Updated: Jun 6, 2020
November 13, 2019 ⋅ 7:30 P.M ⋅ Alec Simoni
When we think about medicine, the chaos of a busy night in the ER or the rush of an emergency operation often comes to mind. But, a whole facet of medicine lurks underneath. It is the opposite of acuity: the world of chronic conditions. The diagnosis of a chronic condition can be especially debilitating. Unlike something acute, like a broken arm or benign tumor, finding out you have a chronic disease carries a special kind of weight, one that will be with you for the rest of your life. For some, it can be too much to handle. But not for 2nd year UCLA student Ryan Troutman.
Ryan was born and raised in Corona, California. Excelling in all aspects of life, from school to water polo, his life permanently changed just three weeks before he started college. “I got home from work, had just eaten dinner, and had a lot of pain. I thought it was a reaction to the food, but it was much worse than expected. I ended up passing out from the pain. My mother took me to Children’s Hospital Orange County (CHOC) in the morning.” Ryan’s diagnosis wasn’t immediate. “[The doctors at CHOC] thought I had appendicitis. They did an ultrasound on my small intestine and found nothing.” Switching gears, Ryan’s doctors did a CT scan on the lower portion of his body as well as a colonoscopy. It was with the colonoscopy that his doctors found inflammation in his terminal ileum, a section of tissue that connects the small and large intestines. Shortly after, Ryan was diagnosed with Crohn’s disease, and became one of the “133 million Americans [affected by chronic diseases], representing more than 40% of the total population” according to the National Institute of Health.
His treatment process began by starting on a low-dose cancer drug called methotrexate; “It helps prevent my body from creating antibodies against my main medication, remicade, which suppresses my immune system as Crohn’s is an autoimmune disease.” Not only did Ryan struggle with his new diagnosis medically, but emotionally as well. “Being diagnosed was really scary. I was nervous, afraid, and didn’t know what to do. The biggest thing was that I didn’t have anyone I could relate to on a personal level. I didn’t know how to talk about it to anyone.” Thankfully, Ryan’s family, friends, and amazing doctors all came together to better him both emotionally and medically.
“I got better after a few weeks, adjusting to my medication.” When asked what his life would have been like had he not had access to his doctor’s medical support and his family’s emotional support, Ryan simply said “Bad. If I was still living in denial, my intestines would probably fail, I wouldn’t be able to take in food and be in constant pain. If I didn’t have emotional support, [life] would be really really hard. I wouldn’t be able to internalize anything, having to deal with my disease alone.” Ryan said that reaching out to others and talking about his condition is what got him through his lows. He wants other people dealing with a chronic condition to know that “it can be hard but having that support is so important and helps you get through the hardest times.” Ryan touches upon a major point most people with a chronic condition face. According to the Chron’s & Colitis Foundation, the diagnosis of “Such diseases pose a threat to…their physical and emotional well-being, their social functioning, and even their self-concepts.” The foundation stresses that it is imperative for “the patient to work on ways to improve his or her psychological response. This may be accomplished individually, with family or friends, the patient’s physician, or a mental health professional…”.
I also had the pleasure of speaking with Ryan’s mother Kathi, who touched on the financial side of Ryan’s treatment, specifically what the family would have faced had they not had insurance, “It would have been terrible…Every infusion for remicade costs $26,000, not including the prep. Insurance is huge.” She also mentioned that “It’s $12,000 less to have an infusion at UCLA Ronald Reagan Medical Center than at CHOC because of the emphasis on Ryan being an adult”. When I asked her to clarify further, she explained that at CHOC, the nurses were constantly monitoring his vitals and treating him like a pediatric, where at Reagan the nurses were much more relaxed and expediting of his treatment. Both Ryan and Kathi say they prefer Reagan’s treatment to CHOC’s, both for its efficiency in delivering care and reduced cost.
Ryan’s diagnosis and path of recovery with Crohn's disease can be viewed as a gold standard for the treatment of young adults with chronic conditions. Surprisingly, the cost decrease in Ryan’s treatment as he transitioned from pediatric to adult care is the opposite of the common trend. A recent study by the National Institute of Health states that “Adolescents and young adults (AYA) with serious chronic illnesses face costly and dangerous gaps in care as they transition from pediatric to adult health systems.” The researchers elaborated, saying “60% of youth with special health care needs do not receive core elements of care recommended during this vulnerable time.” The researchers attribute the problem’s existence to the fact that many of the transition programs available today are too streamlined, focusing on treating only a single disease process, leaving “young people with especially rare conditions (e.g. genetic and metabolic disorders) without transition services.” The researchers provided multiple solutions for solving this crisis, ranging from coaching young adults on transition-specific self-management skills to mobilizing the receiving healthcare team of young adults so that they may be better equipped to treat patients coming from pediatric medical backgrounds. After learning about the existence of a cost disparity this large on the national level, I was shocked at the difference in price of Ryan’s care at CHOC compared to Reagan Medical Center. From what I gathered in my conversation with Ryan and Kathi, Ryan’s quality of treatment at both hospitals was almost the same in both situations, making the $12,000 difference in price ever more mysterious. It is strange to think that such large disparities in healthcare can occur between hospitals only an hour away from each other by car.
This piece was written with approval from Ryan Troutman
About the Author
Alec Simoni is an undergraduate student at University of California - Los Angeles.