The Global Burden of Scoliosis: My Opinion
This blog post is explicitly my opinion on issues that I think need to be addressed. I think it would be a shame for me to have this platform and not discuss the real-life issues and implications associated with having scoliosis around the world. This blog post was not written with the intention of offending anyone, but merely to express, in the clearest way that I know how, what I believe needs to be said.
I've had this blog for over a year now, and I've been given the amazing opportunity of communicating with many followers and hearing about their own experiences with scoliosis. Some of the stories I hear are those of resilience and of overcoming this disorder, and some stories I hear are absolutely heartbreaking. These heartbreaking stories usually have to do with a family not being able to afford treatment, whether that be seeing a physiotherapist, a kinesiologist, acquiring a back brace, travelling to specialized medical clinics across their country, or even getting life changing surgery. Some individuals have even shared with me that they're clinically depressed from being in chronic pain, anxious about how they physically look, are bullied for having scoliosis, and even miss school because of the latter. I never really know what to say, as nothing I say can really change their realities. As a Canadian, with additional healthcare benefits, I was fortunate enough to not have to worry about the price of seeing doctors, other physicians, scoliosis specialists, physiotherapists, registered massage therapists and anything else that was entailed. The only major purchase that my family made was for my back brace, which was around two thousand dollars CAD (around 1500 USD), and I am very fortunate that they were able to afford it without having any financial burdens. In terms of my overall experience with my surgery, I received world-class care, and am forever appreciative for it. I cannot state this enough: I am incredibly lucky to live in Canada and have extra health benefits.
That being said, a lot of other individuals are not as fortunate as I have been. I was amazed to learn that my blog had reached various countries around the world (six out of the seven continents), such as: The Netherlands, The United Kingdom (UK), The United States of America (USA), Mexico, New Zealand, Australia, Brazil, Italy, The Czech Republic, Iran, India, China, Albania, Indonesia, Slovakia, Malaysia, Chile, Argentina, South Africa, and the list goes on. What shocked me even more, was the lack of healthcare in some of these countries, and/or the costs of treatment. I had one individual from the USA tell me that because her family could not afford health insurance, spinal fusion surgery, the anesthetics, and the hospital stay alone would cost over $100,000 USD. That amount did not include physiotherapy, prescription medications, and other costs associated with getting surgery (such as time off work, travel costs, etc...). Her family could not afford the surgery, so she lives in chronic pain and often misses school because of it. I've had other individuals with severe scoliosis from developing nations tell me that due to many factors (often political and economic), that they don't have enough funds to even travel to a reliable, safe hospital for a consultation, nevertheless even consider being able to afford the price of surgery. One story that affected me greatly was from a different individual in the USA whose parents needed to take out a mortgage on their home and spent a large amount of their life savings to provide their child with the surgery. These life savings also happened to include saved up money for the individual to attend college or university in the future. These stories are not anomalies.
Ranking of the World's Healthcare Systems. Graphic Retried From: https://forum.facmedicine.com/threads/which-country-has-the-worlds-best-healthcare-system-france-uk-usa-or-germany.25507/
I do realize that there is no "perfect" healthcare system that exists in our world. Every country, no matter what services provided or covered will have flaws. There is very rarely a way to satisfy every single citizen of a country on every issue - especially a personal one such as healthcare. I am also by no means an expert on politics, how healthcare systems work, n'or am I a doctor. However, as an individual who is studying Kinesiology (a medical science), I find it absolutely appalling that treatments, medications, rehabilitation, and other potential costs are not covered by countries which are viewed as being 'world leaders' - specifically the USA and Canada. Since I have not experienced living with scoliosis in a place other than Canada, I feel as though I cannot make assumptions as to what individuals' lives are like, thus I am focusing my thoughts on Canada and our neighbours to the south (the USA).
In Canada, if a physician believes that surgery is necessary to either increase the quality or the quantity of life, it will be covered by the Canadian government (the healthcare system in Canada is publicly funded by taxpayer's dollars). Just over half of every taxpayer dollar spent in Canada (50 cents) goes towards our healthcare system. Some prescription medications are covered, others are partially covered, and a some are not covered by the Canadian government. Canada's healthcare system is in no way perfect, as it does not cover vision or dental expenses (which makes little sense to me as teeth and eyesight are very important).
Distribution of Canada's Healthcare Funding. Graphic Retrieved From: https://www.ephpp.ca/healthcare-funding-policy-in-canada/
In comparison, since the USA does not have 'universal healthcare,' a citizen is not guaranteed health insurance - meaning, that if some medical problem occurs (like the need to correct scoliosis), the individual will have to pay out of their own pocket if they're uninsured. Also, since the majority of scoliosis cases are diagnosed when an individual is in their pre-teenage or teenage years, the financial burden typically falls onto the parents or guardians of the individual.
Distribution of the USA's Healthcare Funding. Graphic Retrieved From:https://tools.ispor.org/htaroadmaps/USPh.asp
Between the years 2000 and 2013, the incidence of scoliosis surgery doubled, as more individuals were being diagnosed (thanks to better screening techniques). However, with a greater incidence, usually there's a greater variation of severity, thus more individuals were recommended to have surgery to fix their spines. With better surgery techniques, shorter hospital stay-periods, faster surgeries, more skilled physicians as well as specialists, one may assume that the USA healthcare system would decrease the costs of scoliosis surgeries, as all the factors that would previously increase costs have decreased. Shockingly, between 1998 and 2008, the overall cost of receiving spinal fusion surgery increased to be almost eight times as expensive. In fact, a 2017 study showed that even though the hospital recovery time was shortened by a day, the hospital charges increased to be greater than three times as much. This study also found that in 1997 the total cost of spinal fusion was around $55,000 USD, and in 2012 (with an even shorter hospital stay) the total cost of spinal fusion was around $175,000 USD - and no, economic inflation of the USD is not to blame for a major increase in cost. As of 2016, the average cost of posterior spinal fusion surgeries for Idiopathic scoliosis in the USA totalled over $120,000. The average "bundled" price for individuals with insurance was over $136,000 USD, and for individuals with Medicaid it was over $62,000 USD. From the individuals that I had talked too, most did not know why the cost had increased, and thought that it had something to do with the amount that their surgeons and other physicians were paid. This is completely false because as of 2019 the "surgeon cost" is only 5.2 percent to 5.7 percent of the overall amount! The same study also found that between 85 percent and 92 percent of the cost was for the facility or hospital stay.
Regardless of political party preferences or beliefs, it should be agreed on that no individual or family should have to go without medical care, especially considering that the USA is one of the many great innovators of medical technologies and research in the world. No one should have to decide between owning a house and providing their child with life changing surgery. In fact, I was extremely shocked to learn that the USA's healthcare system ranks last among the world's wealthy countries (Canada second last), since the USA is the country that spends the most amount of money on healthcare. The cheques and balances don't add up here with both the USA and Canada.
Rankings of Wealthy Countries' Healthcare. Graphic Retrieved From:https://www.sanders.senate.gov/newsroom/must-read/us-health-care-system-ranks-lowest-in-international-survey
So, what do I recommend? Well, to state the obvious I am not an American - but, from an outsider's perspective the only way individuals can change their healthcare system is to elect candidates that also want to change the healthcare system. If you're under the legal voting age, I'd recommend raising awareness of the issue, as well as raising awareness for scoliosis. Individuals can write their local politicians and demand change. Individuals can also lobby to have back braces or other scoliosis treatments (such as physiotherapy) covered by basic health insurance (I'm not sure what private insurance plans or Medicaid currently cover, as there is federal and state procedures). It may seem like one insignificant step, but if everyone always thought that their voices did not matter, then nothing would have been accomplished throughout history. Individuals can also donate to non-profit organizations and charities that provide life changing medical care to less privileged families in the country, or to organizations that help individuals with scoliosis get the treatments they need around the world. Also, being physically active and having a healthy lifestyle decreases an individual's risk of becoming ill in general, which can save a lot of money.
Now, back to dealing with Canada! About 3% of all Canadians have scoliosis (diagnosed cases only reported). Ideally, any type of surgical operation should be avoided at all cost and is considered the last resort. From a personal experience let me tell you, posterior spinal fusion surgery is not very pleasant to say the least. I exhausted my options when it came to treatments in order to try to avoid surgery (including wearing a back brace). If an individual has mild or moderate case of scoliosis, sometimes the curve(s) will increase enough to the point where surgery may be recommended to the individual. I find it very bizarre that back braces and generalized treatments are not all covered by the Canadian government, as the screening and diagnosis is covered, and the be-all-end-all (surgery) is covered, but the most common treatment to prevent surgery is not. The cost to the Canadian government to cover a posterior spinal fusion surgery (including anesthetics, cost of hospital stays, medications, rehabilitation) is way more than a two thousand-dollar (CAD) back brace. Even though there is still a lot of discussion around whether back braces work, even enabling a rebate program for individuals who have been advised by a physician to wear one would help cover costs and spare families financial burden. With more research being put into scoliosis treatments, such as sensors in back braces, and new therapy options, the government should be allocating funds to help with the development of new technologies. It would make more financial and common sense to provide treatments that could prevent the need for surgery, as it will save the government and taxpayers money in the long run. Especially considering Canada's shortage of physicians and long waitlists for life changing surgeries, if more surgeries could be prevented from happening, the wait lists for orthopaedic surgeons would be shorter. This is the type of government assistance needed in our healthcare system in order to help decrease. In addition, if scoliosis is left untreated, it can sometimes cause chronic pain, reliance on pain medications, and mental health issues such as depression, anxiety, and more. A small simple fix for a larger problem... so is there any reason why this wouldn't work?
Other than Canadians not wanting to pay more taxes (no one ever likes taxes), it seems as though a lot of government funding is set aside for more prevalent, major diseases - especially those that impact older generations (such as dementia and Alzheimer's disease). This is in no way to say that these diseases don't matter, as any time someone is ill or needs medical attention it is not desirable. However, at the same time, these larger, more prevalent medical problems aren't getting all the attention they deserve, as the medical system is spread out so thinly that there aren't even enough family physicians in some areas of Canada. Without tackling simple, cost effective fixes, less prevalent diseases and disorders will still consume resources that could be used to combat dementia, cancer, ALS (and more), and continue to create longer waitlists for treatment.
Average Wait Time by Canadian Provinces. Graphic Retrieved From: https://www.theglobeandmail.com/news/national/wait-times-for-medical-procedures-at-20-year-high-in-canada-study/article33001028/
On to another topic that needs to be addressed: mental health. It's no secret that having scoliosis or other physical disorders can affect someone's mental health and wellbeing. In fact, research studies show that in comparison to "healthy" individuals, individuals with Idiopathic scoliosis tend to have a higher amount of psychological disturbances such as negative body-image, low self-esteem, self-criticisms, as well as mental health disorders like depression, anxiety, and more. Speaking from experience, although I never sought help from a professional for this, I struggled a lot with by body image. In my mind, my rib hump was the most noticeable aspect of my body in the world (even though everyone said they didn't notice until I pointed it out), I thought my uneven shoulders made me look bizarre, I thought my uneven hips and waist made me "unattractive" in societal standards, and I thought that missing some ribs made me less of a human. Although I never expressed these feelings to anyone, as time went on, I started to somewhat resent my body and the way it looked. I started wearing really baggy tops and sweaters, and If I were wearing a top that fit a bit tighter, I'd keep a sweater on or my jacket on over top of it. I would also avoid being in a swimsuit at all costs.
Surgery and bracing can also have negative effects on an individual's mental health, which is why I personally advocate for better research into the relationship between scoliosis and mental health, as well as new scoliosis treatments. In general, more funding needs to be put into mental health research and resources on a global level, as there is still an existing stigma against mental health as well as disability in general.
Bottom line, our healthcare systems need to change. As it is, Canada's healthcare system is not sustainable due to an imbalance of funding and funds used. I believe that healthcare is a human right, and no child should bear the burden of being the reason why their sibling cannot attend university, or that their parents had to take out a mortgage, or not being able to have access to healthcare because the government only caters to the upper and middle classes. Simple solutions, such as government-covered costs of treatments can benefit not just the patients, but their families, and the economy.
If you or anyone you know is struggling with their mental health here are some resources. If there is an immediate threat to someones safety call emergency services.
USA National Suicide Prevention Lifeline: 1-800-273-8255
Canadian Suicide Prevention Lifeline: 1-833-456-4566
Kids Help Phone: 1-800-668-6868 or https://kidshelpphone.ca
International Hotlines: https://ibpf.org/resource/list-international-suicide-hotlines
This blog is my own personal experience and journey with Scoliosis. It is not a medical blog, and if anyone has concerns about their own health, they should see a physician.
Resources Used:
https://scoliosiscarecenters.com/scoliosis-surgery-cost/https://www.theglobeandmail.com/news/national/wait-times-for-medical-procedures-at-20-year-high-in-canada-study/article33001028/
http://www.psychiatria-danubina.com/UserDocsImages/pdf/dnb_vol28_no4/dnb_vol28_no4_357.pdf
https://www.canada.ca/en/health-canada/services/canada-health-care-system.html
https://ibpf.org/resource/list-international-suicide-hotlines
https://www.medtronic.com/ca-en/your-health/conditions/scoliosis.html
https://www.ephpp.ca/healthcare-funding-policy-in-canada/
https://www.crisisservicescanada.ca/en/
https://kidshelpphone.ca
https://www.mentalhealth.gov/get-help/immediate-help
https://www.sanders.senate.gov/newsroom/must-read/us-health-care-system-ranks-lowest-in-international-survey
https://tools.ispor.org/htaroadmaps/USPh.asp
https://forum.facmedicine.com/threads/which-country-has-the-worlds-best-healthcare-system-france-uk-usa-or-germany.25507/