Why the Future of Healthcare Matters
For both the individual, and the society they participate in…
September 2014 was a very exciting time in my life. I was 20 years old and I had moved out of home and was living with one of my best friends. I was entering my final full year of undergraduate studies, and preparing for another season with my University lacrosse team. It was the peak of my young adult life in terms of freedom, growth, creativity, and above all, enjoyment. It was a time when I was both living in the moment, enjoying my freedom and using this time to pursue my interests and hobbies without having any real responsibilities to hold this back. However, more importantly, I was heavily invested in thinking about my future, the further education I would pursue, the jobs I would apply for, the places I would travel to. My imagination was endless and the desire to achieve these goals and live the life I envisioned was at an all time high. This desire and hopefulness however began to slowly fade.
As my first semester progressed, I became increasingly stressed with monthly rent payments, grocery bills, staying on top of my courses, playing lacrosse and trying to find the time to go out and have a social life. This is not unique to my case, and are the same challenges faced by many students in Canada. As time went on, I found myself having less and less motivation to do what I know needed to be done. Slowly I began spending my nights lying on the couch. I was having trouble getting out of bed in the morning. My bowel movements were irregular and seriously out of whack. I forced myself to get my daily responsibilities done to the bare minimum, and no more. I had no idea what was wrong, surely if everyone else could deal with the stress of growing into an adult, then so could I. Things became increasingly worse, to the point where I was missing class and did not want to go out on the weekends.
Then one morning I woke up, was unable to stand up because of the intense pain in my abdomen, and reluctantly, though I should have done this months ago, went to the doctors office. I had blood tests done, and was told I most likely had IBS — or Irritable Bowel Syndrome — which is a fairly common disease that is characterized by symptoms such as cramping and indigestion, but with an absence of actual inflammation or ulceration within the digestive system. While waiting for my appointment with the GI specialist that had been booked, my condition continued to deteriorate to the point where I could not wait any longer, and went to the emergency room. More blood was taken, I was given a CT scan and a colonoscopy, and had been finally diagnosed with Crohn’s Disease.
Crohn’s disease is characterized by inflammation within the digestive tract. Although it is most commonly found in the last part of the small intestine, the terminal ileum, in can appear anywhere through the digestive track from mouth to anus. The symptoms generally include fatigue, abdominal cramps, diarrhea and loss of blood. It can also manifest itself outside of the gut as well, causing joint and muscle pain. It is part of a larger family of diseases, known as Inflammatory Bowel Disease — or IBD — which also includes colitis, a similar disease which is confined only to the colon.
Crohn’s disease, while relatively rare, has a new incidence rate between 3.1 to 14.6 cases per 100,000 people per year, with 201 existing cases in adults per 100,000 (In Canada alone). This is not insignificant, and in recent years the prevalence of IBD has been rising. What is even more insidious about this disease is that is much more common among younger people. It typically strikes in the teenage and young adult years, during a time when your main focus should be pursuing your interests, finishing school, starting a career and possibly starting a family. It is also a time for one to take chances, to travel for months at a time or move across the country for a new job. With the diagnosis of IBD, this suddenly becomes much more difficult to accomplish.
Some more facts about IBD, and specifically Crohn’s disease, are that while there are treatments for them, there is no cure. The nature of Crohn’s disease is that of “remissions” and “flares”. Through surgery or drug therapy, remission can be induced and maintained, however at any time the disease could once again flare up causing symptoms that can cause you to put your life on hold, and the worst part is that it is unpredictable. Symptoms can be sudden or gradual. You may feel fine for months or even years, only to wake up one morning in pain, losing blood and needing surgery or a new regiment of expensive drugs.
Ok, I found out what is wrong with me, now what?
How then, is a young person entering the most important years of his or her young life, supposed to plan out this future, to take risks, to really become the best version of themselves possible, with a disease of this nature looming over them. Knowing full well that at any moment, if they are fortunate enough to be in good health, that it can be gone through no fault of their own?
This is where my story is currently at. I got through my final year of school and graduated from university with a Bachelors degree. Our lacrosse team had a good final season. I found a good job that I enjoy. But this process was much more difficult than it had to be. I spent months on powerful drugs which had terrible side effects, and I ended up needing to have three major surgeries, having a portion of my small and large intestines removed, having a temporary stoma, and then finally having it reversed. However, through my support system I persevered and accomplished the goals I had set up for myself.
Currently I am working in the financial industry, and I am in relatively good health, with very few Crohn’s symptoms. While I try to push it out of my mind, I know that since this disease is for life, that at any time I may relapse and deteriorate as I once had. This makes me much more reluctant to apply for jobs in a city where I do not have the support system I have in Ottawa, as I truthfully don’t know that I would have the resources to deal with a flare on my own. It also makes me nervous about taking jobs that are high stress, or based on sales where my earning potential is based on my own output, as I may go through periods where I am simply unable to work.
Luckily, going forward with this disease I have a great specialist to work with, and a knowledge of the disease and what to look out for. However, it should not be that I had to come to my absolute lowest point to be able to feel confident in fighting this disease.
There are many diseases like Crohns, such as other autoimmune diseases, diabetes, cancer that all strike young people and are issues that we will have to deal with for the rest of our lives. These diseases hurt not only the individuals suffering from them and their families, but the economy as a whole. According to the NCBI, “ The economic costs of IBD [in Canada] are estimated to be $2.8 billion in 2012 (almost $12,000 per IBD patient). Direct medical costs exceed $1.2 billion per annum and are driven by cost of medications ($521 million), hospitalizations ($395 million) and physician visits ($132 million). Indirect costs (society and patient costs) total $1.6 billion and are dominated by long-term work losses of $979 million.” These figures are significant. I, and many other young people affected, do not want to miss work. I want to gain as much experience and learn and as much as possible in order to advance in my career. However, it is quite clear that this disease, and others like it, have the power to knock you out of the work force at any given time.
This is why it is important, at a personal and societal level, to battle diseases of this nature head on. For both personal and macroeconomic prosperity, it is important to come up with solutions to minimize the impact that disease can have, especially in diseases that attack the young and are lifelong battles.
How does Hacking Health play a role?
This is why I believe that hacking health is such a powerful tool. This not-for-profit organization acts as a platform to bring together bright minds from healthcare and computer engineering, designing and development. It works to bring awareness to issues that healthcare workers and patients identify. It brings these issues to the web engineers and developers and encourages an innovative solution by leveraging the exponential power of digital technology.
It brings together two groups of people that may not normally interact with one another, and encourages them to work towards solutions to benefit individuals and society as a whole. It is a cause worth fighting for, as everyone has at some point in their life been affected by healthcare issues, or will be affected. In a world that is increasingly moving online, from banking to shopping to learning, and everything else in between, it is time for the healthcare industry to follow suit.
Hacking Health acts as a unique and positive medium to make this possible. In Ottawa we are located in an interesting position, where there is access to policy makers, and where some real progress can be made in the fight against the economic, personal and emotional burdens that an unfavorable diagnosis can have on a person, and the economy that they are participating within.
This is why we should all have a vested interest in the future of healthcare, and is why we need to work together, across industries, in order to find new ways to diagnose and deal with illness. The seemingly endless capabilities and creative innovations that arise from the power of digital technology need to be incorporated into the healthcare landscape. This can allow for better treatment of patients, lesser impact on them and their families, allow better tools at the disposal of doctors and diminish the economic burden that disease can have.
If this story and the message behind it resonates with you, or if you are simply curious and wish to stay informed or even get involved with Hacking Health, please feel free to give your consent here!