How much we have raised thus far: $365
Economic Issues Surrounding Childhood Cancer
by Lucas Harrison
Today, there are many economical issues surrounding childhood cancer. These concerns include underfunding of childhood cancer and employment struggles of parents whose children have been diagnosed with cancer, just to name a few. It is important to understand these difficulties that families unfortunately face in a time of such chaos. This section will further communicate these brutal economical struggles that families face every day with anticipation of providing our society with a more thorough understanding of these key issues in attempt of furthering their knowledge, enabling them to take action as they see fit.
The issue of underfunding of childhood cancer is inevitable. Undoubtedly, the costs of chemotherapy, prescription drugs, and other treatment are outrageously expensive. Unfortunately, these costs of treatment fluctuate each day. In 2015, the National Cancer Institute had an annual budget of $4.93 billion dollars. Disturbingly, only 4%, $198 million, was directly allocated to childhood cancer (Childhood Cancer Facts). While there is no sum of money that could instantly allow the National Cancer Institute to cure childhood cancer, this statistic is evident that childhood cancer is by no means on the top of their priority list and extremely underfunded. Zoe Read and Jonathan Agin are two, of many, authors whose literature argue that childhood cancer is vastly underfunded and suggest that various changes must be made to the National Cancer Institute’s overall funding. The federal government’s core budgeting purpose is almost inconsequential when it comes to childhood cancer. Every disease population argues that their sector is tremendously underfunded, but the National Cancer Institute marketplace is full of individuals actively fighting for “a piece of the pie” of the overall budget (Agin 2013). Due to the low funding of childhood cancer from the National Cancer Institute, critical research goes untested, therefore giving doctors no option but to prescribe the same regimens that, while possibly successful, can cause many severely damaging side effects. Researchers are working strenuously to test new theories and treatments, but feel as if they are being refrained (Read 2013). Read’s literature contains a very heartbreaking story of a boy named Danny, who was diagnosed with T-cell lymphoblastic lymphoma, a rare and aggressive form of non-Hodgkin’s Lymphoma. The text goes on to tell Danny’s saddening story while also incorporating his father’s thoughts about his son’s life and how these medications possess significant likelihoods of disturbing side effects in the future (Read 2013). These authors, along with many others, believe that society must take this issue into their own hand if this issue is ever going to change. For example, Again states that we cannot continue to be dictated and controlled by other interest groups or congress.
Another economical issue that many families face is work-related struggles of parents whose children have been diagnosed with cancer, more specifically fear of termination. Employment scares arise when parents have to take a leave of absence to be with their sick child. Sadly, parents that miss work for extended periods of time are only protected so much by laws, such as the Family and Medical Leave Act and Americans with Disabilities Act. For instance, even with these laws, parents are often faced with threats of termination from their employer because of absence or decreased productivity. Moreover, if a parent gets fired, then their household income drops dramatically intensifying the complications of paying their children’s medical bills even more (Staci 2016). In a study conducted by Karolinska Instutet, researchers concluded that family income severely decreases after their child has been diagnosed with cancer. Mother’s annual income declines by 21 percent, while father’s annual income decreases by 10 percent (Wiley, 2016).
The difficulties that these distressed families face each day, while unavoidable, entail an unnecessarily amount of economical issues that will affect them for the rest of their lives. No family should have to experience these struggles and there is no reason for us not to take affirmative action (Agin 2013). We must come together, as a society, and reach out to the community and engage on social media, so that our voices are heard and our objective is clearly made. It would be very difficult for someone to argue that our children’s lives do not matter and that a change should not be made (Agin 2013).
Financial Burden of Childhood Cancer
by Andrew Duggan
Costs of healthcare are currently skyrocketing at a rapid pace. Particularly, costs of childhood cancer treatment are increasingly steep compared to adult and geriatric cancer costs. The costs of hospitalization and care present the heaviest financial burden, with out-patient treatment and physician assisted treatment following close behind (de Oliveira 2016). Using cancer registry data from 1995 to 2009 in children 14 years and younger, the most prevalent type of cancer found was leukemia with 36% out of 4,396 patients (de Oliveira 2016).
In a study conducted analyzing the mean costs of the most prevalent types of cancer among children, the mean cost of leukemia was $55,700 (Warner 2015). The costs of leukemia treatment were the highest compared to others such as non-Hodgkin lymphoma, which has a mean cost of $46,900 (Warner 2015). It is understood that the increasing cost of treatment could possibly be influenced by unforeseen circumstances which lead to procedures during treatment. These procedures can be caused by dehydration, infection, and increased amounts of pain which often lead to an increased amount of time in hospitalization (Warner 2015). During the process of a child’s cancer treatment, unforeseen circumstances and procedures seem to present themselves for most patients. In fact, nearly 20% of families reported at least 5 or more unexpected procedures which lead to hospitalization. Procedures that require hospitalization directly accumulate more healthcare costs and increased financial burdens on the families of patients. Furthermore, approximately 35% of families reported more than 5 hospitalizations after 1 year of diagnosis. It is imperative to manage these acute situations and to work to control them to subdue the lofty costs of childhood cancer treatment (Warner 2015).
A primary reason for financial burdens of childhood cancer treatment is the schedule complications that arise with parents’ careers after their child is diagnosed. It is reported that most families suffered financial burden through quitting or changing their job because of their child being diagnosed with cancer (Warner 2015). In most cases, one parent is forced to end their career and become a primary caregiver for the child. This could potentially put the family under severe financial stress if they depend on the salaries of both parents. In this study, an astounding 84% of families reported experiencing work disruptions and schedule conflicts. Furthermore, approximately 20% of families reported losing a staggering 40% of their annual income from these work disruptions during their child’s cancer treatment (Warner 2015). Throughout the course of childhood cancer treatment, there are two significant financial peaks. The first financial peak is at the time of diagnosis, and costs are often difficult to manage because of the financial shock and unexpectedness of the diagnosis. The second financial peak is further down the path of treatment when children experience side effects from treatment such as chemotherapy or radiation (Warner 2015). It is important families act quickly to harness their finances and avoid a financial downfall when their child is diagnosed with cancer, seeking professional help from a financial advisor to avoid severe amounts of long-term debt.
The costs of childhood cancer treatment can differ depending on where the treatment is administered, and the type of care the patient is receiving. In a study conducted comparing the different divisions of care, hospital outpatient and physician office treatment are the primary forms of care (Avalere 2012). Comparatively, the costs for hospital outpatient care is 53% higher than a physician office setting (Avalere 2012). In episodes of chemotherapy treatment lasting 12 months, the average cost for office-managed settings was $66,826 compared to hospital outpatients staggering costs of $102,395 (Avalere 2012). These statistics reinforce the fact that increased hospitalization due to unforeseen procedures directly results in higher costs of cancer treatment.
PTSS and PTSD
by Robert Welch
Many people believe that when somebody has beat cancer, the battle is over and the patient has no more worries. It turns out that worries is one of the problems that these patients have once they have beaten cancer. Post-Traumatic Stress Disorder and Post-Traumatic Stress Syndrome, or PTSD and PTSS for short, are two issues that many cancer survivors deal with every day of their life. While this disorder is usually associated with people who have been to war or have had a traumatic event happen in their life, cancer patients also have forms of PTSS and PTSD. According to a review done in the Clinical Psychology Review, a patient needs to have symptoms occur for at least one month following the traumatic event that happened, and it has to cause serious problems to a person’s everyday life (Kangas, Henry, & Bryant 2002). In this review, Kangas, Henry, & Bryant, explain that patients who have cancer could be at risk to develop a reaction to stress during their lifetime because of what they went through (Kangas, Henry, & Bryant 2002).
One of the first things that cancer survivors deal with when they are done fighting the cancer is denial. According to the Clinical Psychology Review, post-traumatic cancer patients, “Furthermore, the documented denial that many cancer patients display in response to their condition (Wool, 1998) may inhibit emotional processing of their experience (Kangas, Henry, & Bryant 2002).” When these patients even feel like they are sick at all they first thing that they immediately think has happened is that they cancer is coming back. In their brain, it is the first thing that they believe is that the worst-case scenario has happened because the last time they felt sick the worst-case scenario had happened and they were diagnosed with cancer. According to research done in the journal of Traumatic Stress, it does not matter how old the patient is, there is still a chance that they can get the symptoms of PTSD (Andrykowski & Cordova 1998). It goes on to say that one of the ways that PTSD can flare back up is when another traumatic thing happens in their life (Andrykowski & Cordova 1998). This makes sense because when bad things happen to people they start to think about all of the different bad things that have happened to them in their life.
Now that PTSD has become so prominent in people who survive cancer, there needs to be treatment to help out these patients. According to the Journal of Psychological Nursing and Health Services, there is a new treatment for PTSD coming out of the Walter Reed Army Hospital called stellate ganglion block (Journal of Psychological Nursing and Health Services 4). Stellate ganglion block is a, “SGB is a 10-minute procedure during which local anesthesia is injected next to the stellate ganglion, a collection of nerves in the neck (Journal of Psychological Nursing and Health Services 2015).” This procedure is a new thing that can help out these patients who have PTSD. There is also another treatment that is a little more unorthodox that is also used to treat PTSD in cancer survivors. So many people with PTSD can sleep they will use medicinal cannabis so they will not have traumatic instances while they are sleeping (Bonn-Miller, Babson, Vandrey 2014). While from the outside it may look unorthodox to be using cannabis, it is one of the most effective ways to treat this problem.
Mental Effects of Handling Loss
by Hayden Henson
Every year, there are over fifty thousand children that die while still under the care of their parents here in the United States (U.S. National Center for Health Statistics). It is safe to assume that the vast majority of child deaths are survived by their two parents. Therefore, there are at least one hundred thousand parents every year who have to find a way to live past the loss of a child. This can be one of the hardest things any human being can go through. This loss is linked to both complex and damaging “grief reactions” (Prigerson, 1999). The hope is that in comprehending these grief reactions, the problems that grieving parents face will make more sense and society as a whole can better understand what those people going through this need in order to help them get through this time in their life.
Here it is important to define these “grief reactions”. In the case of parents who have been informed that their child is afflicted with some sort of fatal disease, the reactions come quickly and swiftly. Things usually begin with a very numb phase, where the parents are disconnected from the world they are in. Unfortunately, numbness is very often followed by extreme bouts of anger but this is somewhat dependent on the child’s state as well. Many times if the child is old enough to understand his or her surroundings and they are still aware of said surroundings, the outbursts of anger are often bottled up and often can spill out on to other loved ones, especially the spouse (Bowlby, 1980). This is often followed up by disbelief of the diagnosis as well. The next step, and often most destructive is the self-blame phase. It is often considered one of the most dangerous stages because of the variety of ways that people react when blaming themselves for something. A mix of all of these feelings often carry over parents during the entire duration of their childs illness (Bowlby, 1980).
Once parents have lost their child, the marriage of the two often undergoes challenges of its own that several marriages do not survive. “Research on the impact of bereavement as a trauma has emphasized significant negative psychological and health outcomes” (Psychol, 2008). Some studies have found that bereaved parents, those who reported to have intense bouts of emotional loneliness and severe symptoms of depression, are at risk for suicidal “idealization”. One study in particular found that often grieving mothers were at a heightened risk for their first psychiatric hospitalizations (Stroebe, 2005). These are hospitalizations that would probably not come otherwise. This same study found that risk of psychiatric hospitalization in mothers remains at a notably higher rate than usual for an average of five years after the loss of a child. Tragically, studies have shown that across the board that mortality rates are higher among grieving parents as well (It is important to note that this topic in particular has not been investigated in America quite like it has other countries. This study was Dutch) (Li, 2003). These parents, especially mothers, when grieving the loss of a child showed higher rates of death due to unnatural causes (This includes both accidents and suicides) for up to three years after the loss of the child. Studies show that the cause of this may have been a handful of things. Stress levels of parents, again especially mothers, were increased exponentially which has proven to lead to a weakened immune system and often poor health decisions. This includes things like smoking, elevated levels of alcohol consumption, and other destructive behaviors (Li, 2003).
The physical and mental anguish that these grieving parents often go through personally often leaks into their personal life and justifiably so. No person should have to endure what these parents have to endure. “Difficulties have been noted for parental marital functioning, in particular” (Najman, 1993). The divorce rates indicated by some studies is said to be at least eight times higher than those of parents who do not lose a child that has cancer or a life threatening illness (Lehman, 1987).
We are students at the University of Tennessee determined to raise money and awareness for the organization For the Kids @ UTK. We, the Medicine Men, need YOUR help to support these families so they may return to being their for their child and not having to deal with the extra burden of paying costly medical bills.