Saving money is easy when you know what exactly it is that you are saving up for. A vacation with your family. Education. An upcoming surgery. Budgeting and keeping a percentage of your money aside for each of these situations is relatively simple.
When an individual experiences a brain injury, however, saving becomes difficult. An injury of this sort is a lifelong battle and is habitually accompanied by tapping into a savings account and depending on a steady insurance plan.
Additionally, a brain injury is hard to detect early on. It takes a concussion or a shift in bodily patterns for an individual to become alarmed enough to get themselves checked by a doctor. From there on, saving money for the medication needed to treat yourself is hard, especially because of the lack of prior notice.
Today’s article aims to shed light on an (often) unforeseen and dire truth-- the fiscal burden of the longevity of a brain injury. We draw from the experiences of a brain injury survivor and Power of Patients advocate.
Kelly Campbell was an assistant principal and special education teacher in Atlanta, Georgia. An unfortunate present awaited at her doorstep after her 40th birthday. With no prior warning, Campbell was embraced by an ischemic stroke two weeks after her birthday. At the prime of her life, Campbell had normal blood pressure levels, a healthy heart and no prior symptoms that warned her of her soon-to-be-experienced brain injury.
Ms. Kelly Campbell, a TBI survivor, smiling wholeheartedly
We explain her emotional backstory, supported by some research, to help you realize that you are not alone in the way you may feel during your ongoing path to recovery.
A Patient’s Perspective
A mere concussion or fall can pave the way to a serious Traumatic Brain Injury (TBI). The greater the intensity of the TBI, the larger is the racking up of total medical costs. The medical bill per patient generally depends on the number of hospitalization days a patient requires and surgical intervention (if any).
In 2010, the aggregate charges for TBIs (inclusive of direct and indirect expenses) amounted to $76.5 billion (Moderate and Severe TBI | Concussion | Traumatic Brain Injury | CDC Injury Center, 2021). The continuous augmenting of the value of money and the growing population has resulted in this amount increasing a little every year (U.S. Population Growth Rate 1950-2021, 2021). Customarily, patients who suffer from severe TBIs pay additional in-hospital expenses due to their supplementary mandatory stay at the Intensive Care Unit (ICU). Excluding a stay at the ICU, existing reports indicate that an individual on average stays in a hospital for 3.2 days to treat their brain injury. Patients with a general room hospitalization and ICU stay would stay an average of 7.3 days in a hospital, out of which an average of 1.2 days would be spent in the ICU (Levant, Chari & DeFrances, 2016).
In addition to the expenditure sponge that patients have to deal with, Campbell further explains that a lot of energy goes into having to put up an optimistic front throughout this process. The standard repercussion of an illness is the feeling of being burdensome to family and friends. In such a time, the boosting of one’s self-worth is imperative to a healthier lifestyle. This, however, requires a lot of perseverance in the face of negative energies that radiate off of certain doctors and family members. Campbell iterates her reckoning of the “three-to-one ratio” where brain trauma patients exert three times the energy of a ‘normal’ individual to complete the same activity.
Percentage of TBI patients and the services they required in the emergency, inpatient and outpatient departments
Source: (Levant, Chari & DeFrances, 2016)
The number of days patients with TBIs stayed in hospitals, with and without ICU stays
Source: (Levant, Chari & DeFrances, 2016)
The Healthcare System
In the USA, brain injuries are accountable for 2.5 million emergency room hospital visits annually (Kennedy, 2016). Despite being hospitalized and being given the attention required to recover by medical professionals, 40 percent of TBI survivors develop a life-long disability (Kennedy, 2016). Patients that encounter such situations usually experience a disruption in their daily activities and are coerced to quickly adapt to their sudden volatile environment.
According to research, many TBI patients have expressed concern over their potential job loss/demotion due to their injured state. A three year research study conducted in the USA concluded that most severe TBI patients experienced a sudden shift in their insurance coverage as a result of the likely change in their job status (Kennedy, 2016).
The Long-term Expenses supporting a TBI Survivor’s Journey
In several cases, TBI patients require after-hospitalization care in the form of rehabilitation. This is not easily attainable due to their health insurance coverage denying them their required medical bill reimbursement (Ezer, Wright & Fins, 2020).
TBI patients with moderate symptoms cannot easily attain certain monetary benefits to reduce their medical bills. Campbell considers herself to be ‘one of the lucky ones’ because of her visible disability. This blatant illness permitted her to utilize crucial resources to stabilize her financial distress. With access to top-tier medical facilities and the seamless enrollment into social security benefits, she has been given the treatment she needs to help herself, while keeping a constant encouraging smile on her face.
Activities undertaken by inpatient and emergency department TBI patients after hospitalisation
Source: (Levant, Chari & DeFrances, 2016)
The Unnecessary Costs of Misclassification
One of the most underrated topics of discussion in relation to the money sinkhole engendered as a result of an injury stems from the payment of certain unnecessary expenses. This refers to the ‘doctor shopping’ a patient undergoes, and the subsequent expenses that arise out of this exhausting experience.
Campbell relates to this by drawing from her personal experience with doctors and friends. Finding the right doctor as well can be quite tiresome. “I was repeatedly told by doctors that it was ‘all in my head’”, continues Campbell. Taking medication that does not mitigate the pain faced by a TBI patient and constantly setting up appointments with different doctors is not just expensive, but also demanding of energy. Additionally, finding a doctor who listens to what you have to say and believes you can also be a time-consuming process.
At first, it is quite common, according to Campbell, to blame the patient for their trauma. Many people refuse to believe that there might not be an underlying cause to a brain injury. “If I was perfectly healthy and it happened to me, it can happen to them”, states Campbell. She goes on to observe that this blame-game is more common in situations where patients experience strokes.
Although patients are now speaking up about their experiences, many suffer in silence as they continue to be blamed for their illness due to the general stigma surrounding brain injuries.
Power of Patients is here to Help
Campbell heavily endorses the dependence on the Power of Patients dashboard for every TBI patient. Most of the research conducted on TBI patients stems from the experiences of male athletes. Power of Patients tries to bridge the gap in knowledge by recording the experiences of every TBI patient, regardless of their gender and age. This, in turn, will establish a proper research foundation, with which researchers can study TBI experiences of TBI patients hailing from various backgrounds.
Additionally, Power of Patients does not add to the fiscal burden of patients and their families as we strive to collect data that addresses the actual needs of patients for a proper all-rounder guide to clinical studies. It is a free platform that can be used to track any symptom and trigger that you may feel in your day.
Patients can also print hard copies of their reports. Showing these detailed reports of your symptoms and triggers to a doctor will eliminate the problem of ‘doctor shopping’.
Bibliography
Ezer, T., Wright, M., & Fins, J. (2020). The Neglect of Persons with Severe Brain Injury in the United States: An International Human Rights Analysis. Retrieved 11 August 2021, from https://www.hhrjournal.org/2020/06/the-neglect-of-persons-with-severe-brain-injury-in-the-united-states-an-international-human-rights-analysis/
Kennedy, M. (2016). Brain injury linked to increased risk of losing health insurance. Retrieved 11 August 2021, from https://www.reuters.com/article/us-health-braininjury-insurance-idUSKCN0WC25W
Levant, S., Chari, K., & DeFrances, C. (2016). National Hospital Care Survey Demonstration Projects: Traumatic Brain Injury. Retrieved, from https://www.cdc.gov/nchs/data/nhsr/nhsr097.pdf
Moderate and Severe TBI | Concussion | Traumatic Brain Injury | CDC Injury Center. (2021). Retrieved 11 August 2021, from https://www.cdc.gov/traumaticbraininjury/moderate-severe/index.html
U.S. Population Growth Rate 1950-2021. (2021). Retrieved 11 August 2021, from https://www.macrotrends.net/countries/USA/united-states/population-growth-rate
