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The Sickening Statistics of Wealth Inequality
Iris Jaffe, December 2015
No one man should have all that power
The clock's tickin', I just count the hours
The system broken, the schools closed, the prisons open
We ain't got nothing' to lose, ma' fucka', we rolling
Lost in translation with a whole fuckin' nation
They say "How was the abomination of Obama's nation?"
Well that's a pretty bad way to start the conversation
You got the power to let power go?
Kanye West, The Glory
The Economy is Making Me Sick
The economy is making me sick. It does not care about my pain, nor will it formally acknowledge my suffering. Over the past ten years, I have contributed generously and beyond my personal capacity to an economic machine that has provided me with little in return; and this has ultimately rendered me physically disabled, emotionally depleted, and incredibly frustrated.
As a thirty-something female professional in the arts, I have been comparatively underpaid, consistently over-worked, and subject to the demands of a highly competitive industry. With little complaint, I have done everything from toilet scrubbing to bookkeeping, revising complex legal agreements, redesigning data systems, filing tax returns, managing over 10,000 emails, hiring and firing staff, and attempting to electrically re-wire a building (I ultimately hired an electrician for this). I have been responsible for learning entirely new skillsets with as little as one day’s notice and I have had my job threatened on a daily basis, despite performing a superhuman range of tasks that has proven difficult for others to accomplish in my absence. Because most arts organizations are small businesses or nonprofit entities, I have either had benefits with a very low salary (ie. $32k and under), which does not go far in New York City, or I have not received benefits like paid vacation or health insurance at all.
Similarly, as a resident of New York City my low income has been taxed at a disproportionately high rate to pay for the social services of others, while I have paid inflated prices for food, housing and healthcare myself. At a lack of better options, I have rented rooms for $800 per month and up to live in shared apartments with three to six roommates at a time; the only exception being my last one bedroom apartment – where I lost over 60% of my belongings due to damages resulting from the landlord’s negligence that my renter’s insurance policy would not pay to replace.
All of these apartments have had little privacy (one of my rooms had a large curtain instead of a fourth wall), some form of chronic infestation, water damage and black mold; and each location was within a one to two mile radius of multiple sites on the EPA Superfund list, including one that had historically disposed of radioactive waste material via the local sewer system. In addition to being exposed to a large amount of environmental toxins, my body has also been over-caffeinated, undernourished, and fed with chemically processed foods; and my mind has similarly been plagued by an overwhelming amount of personal and professional responsibility. I have sacrificed sleep to have a social life and vice versa; and I have felt very tired for the duration of my professional career.
In the past two years, I became disabled due to Lyme Disease and a hernia-type moving injury that became disabling after moving my residence and art studio a combination of seven times in a four year period, which was mostly due to rapid rent inflation and a lack of affordable spaces for artists in New York City. During this time, I depleted fifteen years of savings to pay for medical expenses and the cost of living while not being able to work. Since first becoming disabled, I have been in the ER four times and have experienced debilitating symptoms on a daily basis. I cannot afford the medical treatment that require and I have been denied disability assistance. Beyond this, I have had to put my career and social life on hold, I have become an unwanted financial liability to my family, and I can no longer be a productive member of society.
I am choosing to share my story and the insights that I have gained through personal reflection and research, because not only do I need real and substantial help, but like the canary in the coalmine, I also view my personal hardships to be a harbinger of mass suffering to come. If we fail to restore the integrity of our healthcare system and reinstate our national democracy at large, I strongly believe that the same socio-economic trajectories that precipitated my personal disability will likely dismantle the health of many more Americas, and ultimately the health of the American economy itself.
Can an economic body thrive if the bodies of its individual constituents are disabled? Based on my personal experiences, I just don’t think it can, and it looks like the experts agree with me.
Since the 1970’s, younger generations of Americans have been increasingly subject to greater amounts of educational debt, lower salaries with diminished employment benefits, larger workloads, strenuous living and working conditions, insufficient access to healthcare, increased environmental toxicity and an increased amount of processed foods and psycho-pharmaceuticals. This is bearing a considerable toll on our physical and mental health; which along with other adverse socio-economic trends resulting from wealth inequality, could soon reap considerable economic losses for the American people.
As of 2015, every single American bears a significant risk for developing a chronic or terminal illness regardless of their age, gender, religious affiliation, genetic makeup, or income bracket. This is largely due to political and socio-economic factors, including inadequate health care, chronic stress, insufficient nutrition from processed foods, increased environmental toxicity, and poor government regulation of health and safety standards. According to national statistics, 1 out of 2 males and 1 out of 3 all females are expected to get cancer, the amputation of a lower limb occurs every 30 seconds due to widespread diabetes, and nearly half the country is expected to have a serious chronic illness like diabetes or heart disease by 2025. Because of the increase in vaccine-resistant and antibiotic resistant infections, the White House has additionally predicted that “modern medical advances such as surgery, transplants and chemotherapy may no longer be viable due to the threat of infection.”
As a result of current trends, the National Institute of Medicine estimates that the life expectancy for younger generations of Americans is now a mere 50 years old. Within this past year alone, over ten peers in my personal network of friends and colleagues have died from cancer, kidney disease, and other undefined illnesses that might best be categorized as exhaustion. They were all under 35 years old. The projected medical and economic statistics that I have reviewed are nauseating and alarming. Beyond sheer economics, it is simply heartbreaking to think about all the unnecessary suffering we might inflict upon ourselves as a result of our collective denial and neglect. Just imagine if you, your child, and your spouse were all undergoing chemotherapy at the same time. It is a nightmarish thought to bear.
The implosion of the healthcare industry and the high cost of U.S. healthcare is additionally symptomatic of wealth inequality and a primary mechanism for furthering it. This is because the population growth and increased life expectancy, which resulted under twentieth century technologies in medicine and other industries, effectively resulted in a global population surge that has increased the level of intergenerational economic competition worldwide. In America the babyboomers are on the brink of their retirement, yet are expected to live longer lives than previous generations, while their children are starting to buy homes and have families of their own; and this temporary bubble in the national population has instigated an extreme concentration of wealth in the United States, and the consequent perversion of our democracy overall.
The high cost of U.S. healthcare additionally fuels wealth inequality, because it funnels more money away from the greater American people, thereby reducing the overall autonomy of individual American citizens, while increasing our collective dependency on borrowed forms of capital, corporate monopolies, and government institutions. This becomes a self-reinforcing cycle, because it increases the wealth inequality that is already causing poor health in Americans.
However, this is ultimately unsustainable, because at a certain point the level of injury and illness in Americans will be greater than the available resources required to keep people alive, which will evenutally cause our economy to collapse altogether, not because markets will crash and people will lose their jobs, but because so many Americans will be dying, there won't be enough people left to run the economy. In other words, an economy comprised of a suffering and disabled population, without the necessary means by which to acquire medical treatment, will eventually fall into disability and disrepair itself.
Crazy Is As Crazy Does
Within the past year, I have been called “mentally ill” or “delusional” more times than I care to remember. These labels were given to me by a number of lawyers, doctors, hospital workers, and civil workers, upon terms that made little sense to me, yet to which these professionals authoritatively ascribed my mental status and inability to reason. Because I had been seeking assistance for medical and legal concerns, this felt condescending, disorienting and isolating. I had difficulty understanding why my direct experience of debilitating medical symptoms and personal interpretation of the injustices I had faced diverged so greatly from the professional feedback that I received.
Additionally, because my family strongly valued these professional opinions over my own, I was prompted to question my own sanity a number of times. Only after researching my medical condition and finding substantial material that supported my intuitive beliefs was I able to stop doubting my sanity; and I consequently find it problematic that my doctors were highly dismissive of the observations, concerns, and questions that I expressed in regard to my health. I additionally find it problematic that the majority of doctors, lawyers and civil workers rarely question the integrity of the standardized guidelines that they follow, nor the potential validity of opinions or observations outside of their own.
Not only is this poor professional practice, but it can be dangerous or life threatening in areas like medical care. While a doctor may be an expert in standardized medical care, health is highly specific to the individual and the patient is often the best expert on his or her direct experience of symptoms.
After personal reflection and research, I thus arrived at the following conclusions about my own mental wellness and the wellness of those diagnosing me as delusional and mentally ill:
1. Yes, I have been mentally disturbed by a number of experiences that would have been disturbing to any other sane person.
2. Because my wellness was distrubed by adverse conditions resulting from corrupt economic practices in healthcare and beyond, the system and those representing its ethically compromised policies are equally or more distrubed than I am, or simply ignorant to the harm that such practices inflict in others.
3. Because my belief that the system is exploitative is supported by a large number of statistical studies, analytical reports, and individual testimonials, I am either more informed or more capable of respecting the validity of opposing belief systems than those who have labeled me as “delusional.”
4. Wealth inequality is making the majority of Americans mentally ill, emotionally unstable, and less capable of rational thought and ethical behavior, and it is insane that we have done little as a collective democracy to fix this.
There is a term known as “gaslighting” in modern psychology, which describes a method of psychological disorientation in which victims are made to doubt their own sanity, memory, and perception to benefit a manipulator’s abusive agenda. It is typically used by sociopaths to disorient their victims for the purpose of carrying out exploitative, immoral, or illegal activities, while projecting an outwardly wholesome or otherwise charming image. Without question, my experience within the public healthcare and social services system has felt much like mental and physical abuse; and the internal methods used by lawyers, doctors, and civil workers to justify neglectful and exploitative practices has felt much like a form of institutionalized gaslighting.
For nearly three years, various specialists failed to diagnose, or misdiagnosed a bulge in my abdomen that first appeared after heavy lifting and became further disabling after acquiring Lyme Disease. While seeking diagnosis, I repeatedly received vague assessments, like “you have anxiety and depression because women your age do not have hernias or cancer,” or “you possibly have a hernia tear and you possibly don’t have a hernia tear” or “this is not my area of expertise and I cannot say what you have.” This advice was given to me over several, standard-length 15 to 45 minute appointments, which involved minimal to medium levels of clinical investigation. I was continually dismissed, billed and referred to alternative providers for further consultation. At no time was I referred to a physical therapist who might have helped me to strengthen my injury and avoid further damage; and although the anxiety and nutritional counseling I received was somewhat informative, it did little to alleviate my physical symptoms, which continued to worsen with heavy lifting, and moving my apartment and art studio a number of times.
After several rounds of referrals without any effective medical direction or diagnosis, it began to feel as though my doctors were simply circulating me through their networks to generate cash flow for each other, or playing “hot potato with patient” for some other undisclosed reason. Or possibly, they weren’t sure of what I had, but also didn’t feel particularly responsible for figuring this out, even though I was paying approximately $350 per half-hour appointment on my high-deductible health insurance plan, which I also paid around $300 a month to have. Given the highly debilitated nature of my condition, the high cost of each appointment or diagnostic procedure ($150 - $1200), and the mechanical nature in which I was dismissed, I found the diagnostic process to be nonsensical, financially exploitative and dehumanizing.
It was difficult for me to understand why none of my providers expressed true interest in figuring out what was wrong with me, or why extracting effective medical care or even clear medical advice felt much like pulling teeth. I am certainly not accusing any doctor of intentionally harming me, and I suspect that the majority of doctors study medicine with an intention of helping and healing others. However based on my personal experiences and further research, I have come to believe that the monetization of contemporary healthcare has significantly lowered the quality of affordable healthcare in the United States. Despite 21st century advancements in medical technology and knowledge, our system is often dysfunctional to a point that it fails to deliver effective care, or to restore health in its patients.
To say the least, my overall experience in the New York State healthcare system has cost me significantly in time, money, and personal energy. My failure to obtain timely diagnosis and treatment for a hernia-like injury in my abdomen and Lyme Disease largely contributed to my development of a physically disabling condition; and I consequently lost my hard-earned professional savings and have had to put both my career and personal life on hold.
Ponzi Schematics: the High Cost of Poor Healthcare
Healthcare is now the world’s largest industry, with a value and cost three times greater than the banking sector. In spite of receiving a comparatively lower-quality of healthcare, Americans also spend more on healthcare than any other country in the world. Studies such as those conducted by McKinsey Global and the Harvard Medical School have discovered that this is largely the result of the privatized insurance payment system, poor administration, corrupt dealings, inefficient government regulation and poor standardized practices. Other industry practices that contribute to the high cost and poor quality of healthcare include the lack of economic accountability that industry providers have for improving patient health and the use of commercial incentives by industry stakeholders to encourage physicians to practice medicine in accordance with their private interests, as opposed to in the best interest of patient health.
The over-standardization of healthcare additionally discriminates against patients who require more individualIzed forms of care. Strict government regulation discourages providers from treating patients outside of mandated guidelines, and patients with unusual or emerging conditions are often left with few or no options for diagnosis and treatment.. The over specialization of medical practice additionally complicates diagnosis and treatment, because failure to address the human body as an interconnected whole can result in the misdiagnosis of non-localized or complex conditions. Likewise, treating the symptoms and not the root cause of disease or injury can additionally delay necessary treatment, or otherwise allow for the development of more complicated or terminal conditions in patients that can be difficult, expensive or impossible to treat later on.
The implosion of the healthcare industry and the high cost of U.S. healthcare is additionally symptomatic of wealth inequality and a primary mechanism for furthering it. This is because the population growth and increased life expectancy that resulted under twentieth century technologies in medicine and other industries has created a global population surge, which has increased intergenerational economic competition on a worldwide basis. In America the babyboomers are on the brink of their retirement, yet are expected to live longer lives than previous generations, while their children are starting to buy homes and have families of their own. At the present time, this temporary bubble in the national population has driven wealth inequality in America to levels equaling that of the Great Depression, which has additionally resulted in the perversion of our democracy overall.
The high cost of U.S. healthcare additionally fuels wealth inequality, because it funnels more money away from the greater American people, thereby reducing the overall autonomy of individual American citizens, while increasing our collective dependency on borrowed forms of capital, corporate monopolies, and government institutions. This additionally becomes a self-reinforcing cycle, because wealth inequality is already a leading cause of poor health in Americans.
The Politics of Diagnosis
Since seeking diagnosis and treatment for my initial injury, I have additionally been covered by seven different health insurance plans; and in hindsight having to switch plans so many times as a result of changes to my personal circumstances or within the healthcare industry itself, likely contributed to the poor quality of care that I have received thus far. Five of these plans were also NYS subsidized plans that compensate in-network providers at lower rates, and this might have also deterred doctors from taking me more seriously as a patient.
Since being enrolled in NYS's Medicaid program, I have additionally noticed that doctors are often hesitant to order diagnostic tests for me, because they are required to justify their actions in strict accordance with state issued protocols. While I agree that closely monitoring medical services can help to avoid surplus spending and minimize harm to patients due to unnecessary care, this can be highly problematic when it results in under-diagnosis or delayed diagnosis, which can lead to the worsening of a patient's condition. Poor diagnostic testing is another highly problematized area within standardized managed care, because unreliable diagnostic tools can additionally result in inaccurate diagnoses, which is often the case with Lyme Disease and its associated co-infections.
Furthermore, had I not specifically requested to be tested for Lyme Disease, which was prompted by a doctor’s cryptic suggestion and a colleague’s mention of her experience of the disease to me, I may not have received a diagnosis for Lyme Disease at all. At the time, I knew little about the condition, but the more I have learned about it, the more surprised I am that none of my doctors had suggested it as a possible cause of symptoms. With the exception of a bull’s eye rash (I had smaller radiating bite marks), I clearly evidenced many of the classic symptoms, including lesions on my legs, circulatory issues, scoliosis, numbness in my lower limbs, nerve damage in my lower spine, difficulty breathing, edema in my ankles, digestion issues and difficulty walking.
Since being diagnosed, I have additionally learned that Lyme Disease is highly politicized within the medical community, and that providers are often undereducated about the condition or reluctant to become involved in its diagnosis or treatment. Thus, in hindsight, the evasive responses that I received from providers seem almost purposeful and even slightly sinister.
When Mental Illness is in the Eye of the Beholder
One of the strangest experiences that I've had thus far in the healthcare system was during a visit to the Urgent Care Center (UCC) at Weill Cornell, right before I was diagnosed with Lyme Disease. While still in triage, a young man went grey in the face after seeing the set of radiating bite marks on my shins. He proceeded to wish me the “very best of luck with those bites," as if he were regrettably delivering my death sentence, or another similarly tragic outcome. In my visit with the UCC however, I was ultimately diagnosed as “delusional” and “mentally ill” and discharged me with a prescription for some Sarna anti-itch lotion that wound up doing little to alleviate my symptoms.
This was particularly upsetting to me, because my blood tests had evidenced that I was fighting an infection, my MRI records showed nerve damage in my spine, and several hospital workers had reacted strangely to seeing the bites on my legs. Furthermore, the reason I had gone to the UCC in the first place was because I had seen another doctor in the hospital earlier that day, who had suggested that the bites on my shins might be causing me to have difficulty walking. She also said it was serious enough to be considered an emergency, and that I should go the UCC. She never mentioned Lyme Disease, but the strange way that she made her suggestion was what later prompted me to ask my primary care doctor (who had also insisted that I was mentally ill) to test for Lyme Disease.
Months later, while reviewing the report that documented my Urgent Care visit, directly following a line of text that documented my negative response to possession of a firearm, I was surprised to read: "Does the patient appear to be answering questions honestly and fully?: No.",
For the record, I do not own a gun, nor do I perceive myself to be someone who seems likely to own one. I also do not believe that the UCC had any reason to think that I was not answering their questions honestly and fully. I may have been a bit frustrated and visibly angry that the UCC kept insisting that I was mentally ill and delusional, but all of my responses were given factually and honestly and all of my physical tests reflected this. Furthermore, not only did the UCC entirely discredit the validity of my perspective altogether, but the author of the report also dramatized and fictitiously improvised upon my responses to the interview questions that I was asked to be more in line with a diagnosis of mental illness.
While I cannot say whether or not this was done with negative intent, I can say that I found the report to be incredibly insulting and reflective of the poor quality of healthcare that I received. Not only were the UCC doctors incorrect about my diagnosis, but they mocked me in their report; and they were also highly dismissive of my observations and questions, which were consistent with my diagnosis of Lyme Disease a few weeks later.
I am additionally disturbed that despite four years of seeking medical care and spending over $10,000 on services, the only diagnoses I have received thus far were obtained through my own persistent self-advocacy, research and requests for specific types of testing or examinations. Similarly, the only moderately effective treatment in relieving my mechanical disabilities (ie. difficulty walking, sitting, twisting and turning) has been from two physical therapists who did not take insurance. The month of antibiotics that I received after testing positively for Lyme Disease was effective in eliminating several (but not all) of the symptoms that the ER doctors had attributed to mental illness, and it is upsetting to think what might have happened had I not received those antibiotics at all.
This is not to say that I believe my medical providers had wished to manipulate or harm me; and very likely, most were unaware of how they might be hurting me. Or perhaps, given their personal limitations within the system, they might not have known how to help me. However, I do believe that doctors, lawyers, and civil workers are trained to implement practices that are designed to benefit private stakeholders at the public’s expense; and I furthermore believe that participation in such practices makes practitioners, and to a lesser extent clients and consumers, at least partly responsible for the harm that this causes in others or in themselves. This especially holds true in the absence of patient education or the right to choose individualized treatment, which is largely the case in standardized U.S. healthcare today.
Likewise, it has been immensely frustrating to me that in spite of diagnosis, I am still unable to acquire the medical care that I require, due to the prohibitively high cost of treatment for both Lyme Disease and the surgical repair of a sports hernia, neither of which are covered by my NYS subsidized insurance plan. It is additionally frustrating that I lost my hard-earned professional savings to medical expenses for ineffective care and the cost of living while not being able to work; and that I have furthermore had to put my career and personal life on hold due to disability.
“I Don’t Make the Rules I Just Follow Them”
Whenever I have critically addressed my inability to find affordable healthcare with a medical provider, lawyer or social services worker, I am either told that I am “mentally ill” or “delusional,” or I am dismissed and asked to leave. Instead of providing me with effective medical treatment, the practitioners whom I have seen within the standardized healthcare system have recommended that I take pain relievers or antihistamines, or go to psychological counseling to learn how to manage my “new physical limitations," which my subsidized healthcare plan will not pay to medically treat.
Even the doctors, lawyers and consultants who have empathized with my situation have been unwilling to help me for fear of compromising their own professional security. “I don’t make the rules, I just follow them,” and “please seek help elsewhere” are two phrases I have heard an inordinate number of times. Two individuals in legal services cryptically recommended that I watch “Erin Brockovich,” but would not further discuss why. Motivated by their suggestions, I later discovered that the apartment in which I had contracted Lyme Disease was located within a two mile radius of several sites on the EPA Superfund list; and I suspect that my Lyme infection might have been complicated by some type of toxic exposure, as is common in the majority of autoimmune disorders.
Meanwhile, almost all of the private attorneys whom I have inquired with have rejected my personal injury and malpractice case, because it is not extreme enough to be profitable for them; and one lawyer even responded with an emphatic “Haha –yes the system is quite Draconian! Good luck!” Similarly, private medical practitioners have been unwilling to adjust their rates for me, because I am just one of many patients in need; and several providers have expressed additional concern over the rising cost of private practice in New York, which I strongly believe to be in the city’s worst interest, but will not elaborate upon here for brevity’s sake.
Similarly, in spite of my having paid employment taxes for years and further submitting several medical records and impairment evaluations from MD’s that verify my condition to be disabling, the SSA still does not consider me to be a disabled person, because I lack a qualifying diagnosis according to “their rules.” While I would agree that Lyme Disease and Sports Hernias are not necessarily long-term disabilities with the proper treatment; in the absence of effective medical care, they are both undeniably disabling. Thus, because I am unable to acquire treatment for either condition, I find it extremely unreasonable for the SSA to consider me anything other than disabled. Furthermore, not only does my denied disability claim deny me funding that I could use to pay for private treatment; but moreover, the failure to acquire treatment prolongs my disability, which additionally prevents me from being a productive member of society and also makes me a financial liability to my friends and family, who are struggling to meet their own financial needs at this time.
At one point, I had hired a disability lawyer, but I ultimately dismissed his services due to our divergent perspectives on my medical disability. In spite of my infirmity, his primary recommendation to me was to seek employment, further advising that a work-related accident or the development of a more crippling condition would strengthen my disability case. He had likewise done little work on behalf of my case, instead recommending that I go to psychological counseling in pursuit of psychiatric diagnosis, because “no one will believe that someone, who is under 40 and went to an Ivy League school is disabled, especially if you are not extremely obese.” Although I could not agree less with the perversity of this logic, I do not doubt that it is the prevailing albeit unconscionable perspective of the administration at large. As a physically disabled person who has merely been unable to acquire a diagnosis within the limits of the SSA’s restrictive terminology, my physical disability would be an obvious liability to any employer that might hire me; and this would moreover pose critical risk to my already debilitated condition.
White Privilege 2.0
Moreover, it is perhaps most disturbing to me that the federal and state administration does not value my life enough to provide me with either effective medical care, or working conditions that would be non-hazardous to my disabled condition. I was also upset to learn that patient advocacy is typically reserved for the terminally ill and that under state-subsidized health insurance, patients are rarely able to acquire medical treatment for less conventional conditions (like sports hernias), unless this is upon life-threatening conditions in an ER. Thus, not only did my government largely facilitate the strenuous living and working conditions under which I initially became disabled, but it also continues to enforce institutional regulations that prevent me from acquiring the treatment that I need to become an able-bodied person again. It furthermore denies responsibility for me as a disabled citizen, by denying the legitimacy of my physical disability and failing to provide me with financial assistance to pay for either my cost of living or the specialized medical treatment that I have yet to acquire.
The cumulative effect of my worsening pain along with the difficulty I have experienced while trying to acquire effective medical care and advocate for my civil rights has thus felt much like physical and psychological abuse. After several ER trips and experiencing significant difficulty walking, I have also had to move back in with my family for the first time in fifteen years. The passionately felt blame, anger, and criticism that they have directed towards me for failing to take care of myself and burdening them with my care, on top of the the adversity I have already been experiencing within system, has felt much like torture. It has likewise been highly upsetting to be denied assistance from the few caretakers in a position to help me, and I often feel as though I am treated like a disposable piece of human trash.
As a result of my experiences, I have also developed an immense empathy for veterans and disabled workers who have been similarly abandoned at the hands of this broken healthcare system and compassionless bureaucracy. I cannot imagine the suffering that some people have been subjected to by the lack of consciousness in others, who either fail to take responsibility for the pain and suffering that their actions cause in others, or fail to see this pain and suffering at all. I realize that overworked doctors, nurses, and social service providers are likely being mistreated themselves, and must need to become desensitized to systemic corruptions in order to maintain their own sanity, but at what point do we take collective responsibility in acknowledging that this is not “Okay”?
Doctors, Indoctrination, and Discrimination
When the Martin Shkreli story hit the press, I was shocked to see that so many people actually cared about AIDS patients, and that the majority of people saw Mr. Shkreli as an evil person. This is NOT because I support Mr. Shkreli’s business tactics, but because his tactics are standardized practices within the healthcare industry at large, which continues to allow businesses to knowingly profit off the suffering of American patients. I have additionally received very little empathy in regard to my own inability to afford healthcare; and I can only attribute this to a general lack of awareness in others for the high cost of medical treatment in certain types of patients, including artists with low quality health insurance and those with chronic Lyme Disease.
In many ways the government’s initial discrimination against AIDS patients is analogous to the discrimination that patients with more complicated cases of Lyme Disease now face. The proposed Shkreli price hike that the media and public rightfully portrayed as a potential tragedy for AIDS patients, has been happening to patients with chronic Lyme Disease for years. This is especially problematic, because the numbers for Lyme Disease have jumped from 30,000 to 300,000 new diagnosed cases per year, which makes Lyme disease six times as prevalent as AIDS (50,000 new cases per year) in the United States.
As a systemic bacterial infection that requires antibiotic therapy, treatment for Lyme Disease is additionally complicated by the rise of highly resistant bacteria, which was recently declared to be a global health crisis by W.H.O. and the White House. In the National Strategy for Combating Antibiotic-Resistant Bacteria published by the White House in September 2014, officials issued the alarming warning that "as more strains of bacteria become resistant to an ever-larger number of antibiotics … modern medical advances such as surgery, transplants and chemotherapy may no longer be viable due to the threat of infection.” Considering the disastrous consequences at stake, it is both disturbing and surprising that there has been little media coverage for this issue; and the steps that the medical industry is actually taking to address this emerging crisis in healthcare remains unclear.
In contrast to the AIDS epidemic, which the U.S. government initially denied and failed to control for years, all people are also at risk for acquiring Lyme Disease, which is primarily transmitted by ticks and other insects. Scientists also believe that the tick population is growing exponentially due to climate change and increasing humidity; and ticks are not just in the woods, they are in cities and suburbs and often travel into living spaces by traveling in the fur of mice, outdoor pets, deer and other hosts. When antibiotics are administered immediately, Lyme can be effectively treated with a single course of antibiotics. However, when left untreated or under-treated, the infection has been known to induce to a wide range of debilitating and chronic symptoms, including chronic pain, tumor development, irregular heartbeat, stroke, pulmonary embolism, and psychiatric conditions like depression and anxiety. Lyme infections have also been found to significantly worsen in the presence of chemical toxicity, chronic stress, processed foods and strenuous living and working conditions. In prolonged infections, Lyme Disease can inhibit the body’s immune system and can affect the central nervous system, manifesting itself in a similar way to diseases like MS, ALS or certain forms of cancer. It can be terminal in severe cases and can cause sudden death at any age.
Furthermore, due to standardized practices in healthcare, patients with delayed diagnosis or more severe infections of Lyme Disease are only able to acquire treatment from Lyme Literate MDs (LLMDs) whose services are typically not covered by health insurance companies. The cost of an office visit with a Lyme specialist is around $850 per visit, and blood tests and treatment can cost up to $60,000 a year. This means that many patients with the chronic form of Lyme Disease are simply unable to get treatment, which can be terminal in certain individuals or debilitating in the rest. In respect to my personal condition, the surgical repair of a sports hernia (by a qualified surgeon) also costs approximately $25,000. This includes $500 for pre-surgical consultation, $5,000 for imaging, anesthesia, and associated costs, $15,000 for surgery, and $6,000 for post-surgical physical therapy.
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