March 2012

Rights Versus Mandates: The Health Insurance Debate

Published on March 28, 2012

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I’m 30 years old, I eat right, exercise, get lots of sunshine and minimize the known carcinogens I put in and on my body, but an accident can happen to anyone, right? Last September, I was laid off and COBRA insurance would have cost me $1200 per month to continue coverage, so I decided to take a risk. Bad things happen to good people, but I simply cannot afford to continue coverage at that rate while on unemployment (or working full time for that matter). Those who know I am a veteran might remark, “Oh but you have the VA for insurance.” Yes, I am enrolled in the VA’s health care system, but it is NOT insurance. I have access to health care at the VA on a sliding scale rate based on my income, but this is not “free insurance” as so many civilians have tried to argue with me. If I am treated at a non-VA facility or have to take a joyride in an ambulance, which will take you to the nearest public hospital, I am 100% responsible for that bill. So, no, I don’t have health insurance and the health care I am eligible for at the VA I earned. I’ve never applied for insurance outside of what my employer provided, but I have a pre-existing condition. I’m an unemployed, uninsured statistic, but I refuse to put my individual wants over the laws of the Constitution, the rights of the States and the individuals.

According to Reason Magazine, the individual health insurance mandate is a clear violation of the American contract law because, “American contract law rests on the principle of mutual assent. If I hold a gun to your head and force you to sign a contract, no court of law will honor that document since I coerced you into signing it. Mutual assent must be present in order for a contract to be valid and binding.” Under the Individual Mandate the government will be unlawfully forcing individuals into a contract with private companies.

Where will it stop? On March 27, the second day of the Supreme Court hearing, Chief Justice Roberts asked if the Federal Government was going to force people to own cell phones so they could contact emergency services; a clear example of the slippery slope we are sliding down. If this passes, I would like to propose that we have Home Invasion Insurance and force every American to own a gun, like is required in Switzerland. If everyone owned a gun, who’s going to break into homes? Statistically, the more guns the public owns, the lower the crime rate and Switzerland has the lowest violent crime rates in the world. So, if all of my neighbors own a shotgun, I’m far less likely to fall victim of home invasion and, therefore, have Home Invasion Insurance.

Furthermore, justification for the individual mandate of the Affordable Health Care Act is that it falls under the Commerce Clause of the Constitution. Article I, Section 8, Clause 3 states:

[The Congress shall have Power] To regulate Commerce with foreign Nations, and among the several States, and with the Indian tribes.

This clause authorizes Congress to, “regulate commerce in order to ensure that the flow of interstate commerce is free from local restraints imposed by various states. When Congress deems an aspect of interstate commerce to be in need of supervision, it will enact legislation that must have some real and rational relation to the subject of regulation.” (The Free Legal Dictionary). This clause does not give Congress free reign to regulate any inter/intrastate commerce solely because commerce has taken place. This clause was actually written to protect the States and promote free markets. It is kept in check by the Tenth Amendment, or rather should be. The Tenth Amendment states:

The powers not delegated to the United States by the Constitution, nor prohibited by it to the States, are reserved to the States, respectively, or to the people.

And down we slide! In the past year, numerous sting operations have been conducted on Amish farmers selling raw milk to buyers who are fully aware that the product is unpasteurized. In one specific incident, the investigation lasted a year until the milk seller crossed state lines and a SWAT team could arrest him under guise of the Commerce Clause. Yet, does this fall under the Commerce Clause? It shouldn’t – it does not impede the milk companies in the states where the Amish farmers went to sell their villainous raw milk. In response, Congressman, and Presidential candidate, Dr. Ron Paul introduced the bill, HR 1830, to allow the shipment and distribution of unpasteurized milk and milk products for human consumption across state lines. Will we soon have to pass individual laws for every aspect of interstate commerce?

It is no longer even restricted to interstate commerce. “In the 1942 case of Wickard v. Filburn, the Court held that the Commerce Clause allowed Congress to forbid an Ohio farmer named Roscoe Filburn from growing twice the amount of wheat permitted by the Agricultural Adjustment Act and then consuming that extra wheat on his own farm. In 2005, the Court reinforced this decision, holding in Gonzales v. Raich that medical marijuana cultivated and consumed entirely within the state of California still counted as commerce “among the several States” and was therefore open to federal regulation” (Reason Magazine). Again, I ask, where will it stop? Will we have to have another Civil War to defend the State’s Constitutional rights? If so, sign me up.

If this passes the Supreme Court, which is there, not to judge its necessity, but rather its lawfulness, I will be punished. I can’t afford insurance so I’ll be penalized with yet another tax. Last year, my income was taxed 25% for Federal Income Tax, 9.3% by California State Income Tax and on top of that I had to pay 7.75% Sales Tax, the hidden tax. That adds up to 42% of my income! Now, I’m going to be penalized for not purchasing a product I don’t want from a private company? That doesn’t sound like America to me.

And will it even lower health care costs to the individual? NO! I am not an economist, so I will simply refer you to these sites for more information: Charity, Health Care and the Free Market, Find it Hard to Defend Free-Market Medicine. If you can expand more on how this legislation will impede the free market and raise the cost of health care rather than lower it, please join the conversation below.

Our founding fathers wrote great liberties into our constitution, but with these great liberties comes even greater responsibility; the responsibility to fight for those freedoms at all costs. Americans are ready to throw away State rights and individual liberties in order to have health insurance mandated and provided for everyone. However, the Bill of Rights doesn’t include health care, nor should it be up to the government to provide this service. Is the health care system broken? Yes. Do we need the Federal Government to fix it by force, taking away the fundamental rights and choices of individuals, States, private companies, doctors, etc., and thus creating more and more laws, regulations and taxes until we no longer have any freedoms or income? That, my fellow citizens, is up to us and whether we stand up and fight for our rights as bestowed upon us by the Constitution.

The Slippery Slope of Regulating Perceptions: Stand your Ground

by Chandler Marrs, PhD

Published on March 27, 2012

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As I write this post, there are two, seemingly mutually exclusive, events rocking the nation and a third about to re-ignite; the Trayvon Martin tragedy, the battle over women’s health rights and the Supreme Court hearing on healthcare. I can’t help but thinking somewhere in the depths of these events there is an important point missing from the conversation.

On the one hand, a child was shot and killed as he walked home from the store. His killer remains free and protected by a poorly written law giving the shooter justification by self-defense. The killer believed the child was a threat to him and that is all that was needed under the NRA supported Stand Your Ground Law, recently enacted in Florida and other states.

“The Stand Your Ground Law acts as an immunity to both criminal and civil liability once it is successfully raised at or before trial by somebody who has been accused of using deadly force. See Peterson v. State, 983 So.2d 27, 29 (App. Ct. 2008) (holding that “[t]he [Florida] Legislature finds that it is proper for law-abiding people to protect themselves, their families, and others from intruders and attackers without fear of prosecution or civil action for acting in defense of themselves and others.”). Once a person raises this self-defense, “the trial court must determine whether the defendant has shown by a preponderance of the evidence¹ that the immunity attaches.” Id. Once the immunity attaches, it is then the prosecution’s burden to prove beyond a reasonable doubt² that the self-defense should not apply and that the person is guilty of the crime. Montijo v. State, 61 So.3d 424, 427 (App. Ct. 2011).” (The Urban Politico)

On the other hand, we have a series of laws, proposed and enacted, that give a physician the right to withhold medically relevant information to a woman, if that information can be perceived as leading to an abortion. Furthermore, should the withheld information cause injury or death to the mother or child, which is inevitable, additional laws have been enacted protecting the physician from medical malpractice in these ‘wrongful birth’ cases.

In both cases, the fundamental questions of guilt or innocence, and the personal responsibility for the life or death of another human being need not be based upon the actual facts of the case. Rather, these laws allow defendants protection based upon what they believe or feel about the circumstances. The aggressor has legal justification to act if he/she believes a threat exists or a possible future action might occur. Feelings and beliefs are trumping facts and reality. This is a slippery slope.

Perhaps, even more insipid is the underlying assumption that it is OK, even justified, to harm another individual, a woman, a child, if doing so accords with one’s religious, political, economic or racial beliefs; that those organizational ideologies somehow supersede the basic human ethic and make the harming or even killing of another individual, whether by force or by bad policy, OK so long as I/my group believe it to be OK.

Enter this week’s Supreme Court hearings on the individual mandate aspect of the Affordable Healthcare Act. Although unconnected on the surface, this too has the air of succession of belief over reality. Only in this case, the courts will decide the value of human life versus the value of economic gains or loss, under the auspices of state’s rights and individual liberties versus federal power. Admittedly, legal scholars frame this decision differently and the pundits on both sides of the aisle have their opinions, but at its core, this decision will determine whether basic access to health care is a right determined by the presupposition that human life has value above economic or political gains worth protecting at the federal level or whether it is simply a commodity in a very screwed up political economy.

The facts of this case are that the American healthcare system is inefficient, has poor outcomes compared to other industrialized nations and is way too expensive. To boot, 30 million Americans do not have the insurance that provides them access. Every one of these 30 million Americans will become ill at some point and many will die without access to care. Do we as a nation think this is acceptable? Apparently, many do. And the fact that many people are suffering or dying doesn’t appear to have bearing when compared against the perceived economic gains or losses of certain industries or the political power many seek to retain. What some feel they will lose, should the healthcare act survive, has primacy over reality and facts. Indeed, if facts and reality mattered, there would have been a host of other solutions to presented, that address the actual costs to a nation that doesn’t provide its citizens healthcare. As we all know, this was not the case.

Yes, there will be economic consequences if healthcare is provided to all (perhaps some positive). And maybe the individual mandate is not the solution, but the arguments before the courts are not about whether the mandate is the right solution. These hearings are about whether facts trump feelings and whether the value of human health trumps state power and the economic gain of a few. Let’s hope the collective wisdom and ethics of the Supreme Court is greater than what has been observed in local legislatures and courts across the nation.

Subtle but fundamental changes in discourse: is anyone listening?

by Chandler Marrs, PhD

Published on March 14, 2012

2338 views

Discourse Matters

What happens when we change the definition of a person to include everything from a corporation to a barely fertilized female egg? What happens when the corporate person and a collection of cells have more tacit and actual rights afforded than actual sentient beings? Though the loud and often offensive debates over a woman’s manifest right to make decisions about her health have led many to declare a ‘war on women,’ these same trends will serve to erode human rights in general- even for male humans.

Perhaps more of a philosophical question at this point, but when the definitions of words within a language dissociate so radically- person no longer means a human- it is difficult not to wonder what ramifications are before us; the law of unintended consequences will most certainly be at play here.

The Subject in Discourse

Language, and by association conversation or discourse, follow some very specific rules. At the most basic level, a sentence contains a subject, verb and object and, for the most part, words describe something about reality. (We’ve long since dissembled language and reality with mega marketing, political expediency and spin- but that is another topic altogether).

Subjects are usually, he, she, it, they etc., a person or thing. Although the definition of person has evolved over the course of history, it is generally allied with some underlying concept of sentience or thinking. Even though animals can think, we have never defined animals as persons (try as many dog lovers might) and there has always been a clear demarcation between human and everything else. Over the course of two years, however, cultural forces have rendered that definition virtually obsolete. And we have yet to settle on a new definition.

Corporate Privileges in Discourse

By law, corporations are now afforded some of the same (often more) rights than human persons. A corporation is comprised of human persons, but is essentially a contrived legal entity that allows business to transact. What does it mean when a legal contrivance becomes a person? Because corporate persons often have more power and money, there is the very real risk that their market goals will supersede basic human rights. (As a countervailing force, however, the millions of people within corporations connected socially online may overturn this overstep- see my last post).

The Risks of Anti-Abortion Discourse

Similarly, local anti-abortion supporters aligned with local government entities have pushed legislation across multiple regions of the US that grant a fertilized egg, person status; often affording the cell person more rights than the human person. Along with these trends, legislation that either forces women to undergo unneeded medical procedures and/or prevent physicians from providing medical information to women supersede the rights of the human-sentient person in favor of cells. No matter what you believe about abortion, this is a fundamental shift in discourse with significant policy ramifications.

Aside from the potentially life-threatening position a woman can now be placed in legally, aside from ethical quandaries these laws place a physician in and the very real medical malpractice suits that these laws open the physician up to, this shift in language, motivated by narrow political goals, removes the notion of human rights, human persons, from policy discussions. And although, these policies currently target women specifically, they will ultimately erode rights for all humans. Who is to say other cells or other legal or object entities don’t indeed deserve to be protected over the rights of humans.

Sperm cells for example, are core constituents of human life and until we master asexual reproduction, why shouldn’t all sperm cells be considered sacred and merit the same protective caveats as the female egg? Or to its absurdity, the male penis, testicles and the like, containers of this life-giving force, why shouldn’t they be enshrined and protected until the moment of copulation- a chastity belt perhaps?

Laugh as we might, redefining personhood to include everything from non-human, legal entities to a collection of cells that may or may not evolve into a human being, dismisses the role and rights of actual humans. This change in discourse is a dangerous slope.

Underinsured, Underdiagnosed and Anonymous: My Hormonal Hardships, Part 1

by Hormone Stories

Published on March 8, 2012

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It all started in my late teens. Recent high school graduates, my then-boyfriend and I were on our way from O.C. to L.A., when a driver entering the freeway rear-ended us as they were coming off the 91 onramp. A suddenly totaled car and severe case of whiplash quickly changed our prior plans, sending us instead to the local E.R. for immediate medical attention. A series of rush diagnostic tests later, my CT and MRI scans confirmed that I had suffered a C2 cervical neck-spine fracture with lumbar nerve involvement in the collision. I was fortunate to be alive, and luckier still to have survived without brain damage or paralysis, but I would not be simply walking away from this, either. Quite the reverse, it was actually just the beginning of a long battle to come.

Injuries sustained from the crash had triggered a myriad of chronic side effects and secondary conditions, including (but hardly limited to) chronic pelvic pressure, lower back pain, hip misalignment, fatigue, dizziness, and at that time, as-yet “undiagnosed hormonal issues.” I was 19, hurting, scared, and tens of thousands of dollars in debt overnight, due to my emergency room stay, all, through no cause of my own. Having to drop out of college to go through rehabilitative therapy and further hormone assessments over the next couple of years only seemed like more of an end-all to my young future back then. Launched head-first into a cold, cruel world of consistently inconclusive diagnoses and expensive, limited healthcare options, I truly felt the social stigma of being sick and uninsured. Splitting up with my high-school sweetheart a mere few years later, in no small part, because he wanted to have “children of his own”, I also really grew to feel the societal shame of being female and infertile, as well. So, I found myself dually disheartened as my abdominal pain and pressure continued to worsen, going on undiagnosed and untreated clear into my early twenties, despite the ever-growing list of costly blood labs, urinalyses, ultrasounds, and other screening tests, that my doctors had already exhausted.

Even with an employer-provided PPO, it would still be almost five years before any specialist would finally suggest what might be wrong with me (maybe endometriosis, maybe not), or explain what could have caused my prospective condition (maybe trauma from the earlier wreck, maybe not), much less tell me about potential treatments (oral contraceptives, laparoscopy, hysterectomy, or just plain living with the pain and hoping for the best). I was again referred to yet another gynecologist for yet another pelvic sonogram when, at long last, the ultrasound image revealed the suspected endometrial mass, once and for all (or, so we thought). The new gyno’ subsequently diagnosed me with endo’ and put me on low-dose combo estrogen-progesterone birth control pills, taken seasonally, as an alternative to surgery and nerve damage risks. The pill helped relieve some of my symptoms for a while, but it was far from being a permanent cure to my ailment, and ultimately became much more of a curse than a relief to me. Additional complications from an unexpected, ruptured ovarian cyst, followed by an increasingly negative response to the synthetic hormones, also lead to questions about my original diagnosis and method of treatment. Did I have endometriosis at all…was it something else entirely…what do I do now…what do I do next? …

To continue reading, click here.

Underinsured, Underdiagnosed and Anonymous: My Hormonal Hardships, Part 2

by Hormone Stories

Published on March 8, 2012

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We left off from Part 1 of my story with a tentative diagnosis of endometriosis, a ruptured ovarian cyst, and ever-increasing doses of oral contraceptives. At that point in my life, I was scared, in pain and worried that I and the doctors should be doing more.

But, as it turned out, there was not much more that I could do. The doctors said that even if it wasn’t endometriosis, the pill would probably still be the least invasive and least risky treatment option available to me. They told me this without any intention of scheduling further abdominal inspections, pelvic imaging, endometrial biopsies, or blood draws for biochemical markers, despite my pleas for each. Then again, they had confirmed my endo’ diagnosis without a laparoscope, or CA-125 antigen test, as it was. So, what else should I really have expected from them now? Life on oral contraceptives continued because, apparently, my only other choice was living without a uterus (and risking paralysis due to prior cervical vertebrae injury) at only twenty-five years of age.

I had never had long, frequent, heavy, or uncomfortable periods, much less menstrual cramps, as a young teenager. But, as a woman on COCPs in her mid-twenties, I was experiencing altogether nonexistent cycles, regular breast discharge, ceaseless bloating, and unrelenting gastrointestinal pain and pressure (on top of chronic neck and back pain from the past car accident). One silver lining to my proverbial cloud was that I had finally regained most of the neck control and movement previously lost in the collision. Another consolation to this difficult situation was that I had also saved up enough money, working through physical therapy, to return to school. And, maybe best of all, I had found (without trying) a steady, supportive, and understanding boyfriend, who was not only my match in every way, but who always stayed by my side, through the ups and downs alike. Little did we know the coming financial and health woes to befall us, yet again, over the next few years.

Fast forward about three more years into the future—I had transferred to the university as a junior during the Fall term. My boyfriend and I had been together, going on strong, for four years. And, I had been working part-time at a job that I loved for nearly two years. The future again seemed bright. Healthcare access, however, remained bleak.

The COBRA benefits from my old employer had long expired, not that I could have afforded them at $600 per month anyways. I didn’t qualify for health insurance at my new workplace because I wasn’t full-time there, owing to a loaded class schedule on-campus. And, the only medical coverage that I had been able to afford since leaving the other company was a short-lived, hybrid POS-HMO plan, which I ended up having to cancel early as nobody in my area would accept it (there went another few hundred dollars, I couldn’t afford to lose, down the drain). We had been working around the system, paying out-of-pocket for generic prescriptions, and general lab procedures, at local understaffed health clinics, since no one else seemed willing to work with us. This got us by (it had to) until an unexpected slip-and-fall accident that December rendered a hidden colon tumor palpable in my lower body (something we wouldn’t learn for another four months or so).

The ER wouldn’t treat me, and only served in referring me to a GI/Endoscopy specialist, who in turn refused to see me because I didn’t have insurance. A major medical carrier subsequently denied me coverage as uninsurable due to pre-existing conditions (namely my C2 fracture from nine years earlier, and my endometriosis diagnosis from four years prior), essentially blacklisting me among all other healthcare providers. I couldn’t even qualify for government assistance of any kind. I had come close to dying in just a few short months without knowing what was wrong with me, and we were running out of time and options fast. That’s when my boyfriend popped the question, to get me on his insurance, and to save my life…

To continue reading, click here.

Underinsured, Underdiagnosed and Anonymous: My Hormonal Hardships, Part 3

by Hormone Stories

Published on March 8, 2012

2216 views

We eloped without much fanfare at the Office of Civil Marriages in the Spring and over-nighted a certified copy of our marriage certificate to my newly-wed husband’s H.R. Department ASAP. A month later, we received our new medical cards, and my husband’s primary physician gave me referrals to a network-approved gynecology specialist and internist. The gynecologist ordered another abdominal ultrasound, blood draw, urine sample, and pap smear to check for viral, bacterial, and/or urinary tract infections, as well as to rule out other possible conditions like kidney stones or gallstones. The internal medicine specialist referred me to a gastroenterology-endoscopy doctor to get my spleen, colon, appendix, and liver more thoroughly checked out. I also remember asking both of them about going off the pill back then, but each one had advised me to stay on it, at least, until my initial lab results were in. It was definitely no honeymoon as the poking and prodding officially commenced once more.

My upper-left abdomen was tender to the touch below my ribcage, and my lower-left abdominal pain had grown much more intense, now radiating from my stomach to my backside in sharp, rapid, debilitating jabs. It felt like my organs had dropped, and my insides were trying to force their way out of me. It stung to urinate, hurt to have a bowel movement, my urine was very cloudy, and there was a lot of (too much) blood in my stool. The burning sensation in my bladder and the rigidness of my muscles were limiting my mobility, aggravated lower quadrant soreness and spasms were impairing my sleep, and a newfound fear of vomiting or otherwise using the restroom was inhibiting my appetite. I was faint, weary, and weak from excess blood loss, malnutrition, insomnia, distress, and delayed treatment. And, I was just about to begin another taxing hodgepodge of could-be prognoses throughout a long (almost too long) diagnostic process of elimination.

The gyno’ reported that I had crystals but no stones in my urine, and prescribed me antibiotics for a bladder infection (one problem down, many more to go). The ultrasound image still showed a small mass and fibrous tissue, but they did not appear to be ovarian or polycystic in nature. Likewise, although my iron levels were down, my lab panel showed no sign of kidney or gallbladder abnormality or dysfunction. And, there did not seem to be any cervical or vaginal lesions, viral or bacterial. They said that a small uterus might explain my short, light, and irregular periods during adolescence (previously a non-issue to me), as well as an increased susceptibility to endometriosis, and a decreased success rate for surgical assessment or treatment thereof. So, laparoscopy was ruled out as a viable diagnostic test or care option for endo’ altogether, rendering my prior endometrial diagnosis unconfirmed (but still, ironically considered a pre-existing condition), and my current status was again in question. It was, however, recommended that I ask the gastroenterologist/endoscopy specialist about the possibility of any additional bowel, thyroid, and/or pancreatic involvement, though.

By the first time that I saw the GI/endoscopy doctor who the internist had referred me to, a few weeks later, my bladder infection had cleared up and my urine was back to normal. But, I was now passing mucus, tissue, and blood clumps, without bowel movements, in addition to suffering from constant rectal bleeding (without any bowel activity). I could now also feel a throbbing lump bulging against my insides from somewhere near my perineal area, making it extremely difficult for me to sit down (when it had already become problematic for me to lay down on my stomach or even to lie on my back). The gastro-endoscopy physician told me that I had injured my spleen in the slip-and-fall accident, and that it would probably take another month or so for it to fully heal on its own, thus explaining the tenderness that I had felt under my ribs. The doctor also suspected that I had colitis (inflammation of the large intestines) with internal prolapsed piles, and wrote me a prescription for sulfa antibiotics, hydrocodone painkillers, and corticosteroids, for at-home treatment. The second course of antibiotics made me feel a little bit better, and the painkillers helped me to sleep some, but the corticosteroids made the small lump inside me swell into a larger bump ready to burst through my very skin. No, I didn’t have piles or colitis, either.

Five weeks and a bunch of different tests later, I also didn’t have appendicitis, pancreatitis, hepatitis, cirrhosis of the liver, thyroid disease, or diabetes, among other things. I still didn’t have gallstones or kidney stones (they double-checked), but I was still on oral contraceptives (and hating it) as continued to be advised for no given reason. I had been married for four months; the summer was half-over and we were spending hundreds of dollars per month in medical premium deductions, on top of hundreds more in mounting insurance co-pays, and other related expenses to no avail (needless to say, our savings and hopes were dwindling quickly). They didn’t want to do a colonoscopy on me because I was way under the age of fifty, had no recorded family history of colon polyps, colonic ulcers, diverticulosis, or diverticulitis, and nobody really expected to find anything anyways. But, they too had run out of other tests to perform, even though I wasn’t getting any better under their watch. A preliminary colonoscopy and biopsy, a repeat procedure, and multiple follow-up biopsies, however, ‘finally’ and shockingly confirmed that I had an adenocarcinoma tumor in my colon. I had colon cancer? …I had colon cancer…

To continue reading, click here.

Underinsured, Underdiagnosed and Anonymous: My Hormonal Hardships, Part 4

by Hormone Stories

Published on March 8, 2012

2376 views

My husband and I were suspended in a state of utter shock and disbelief, as the GI/endoscopy center rushed us referrals for a variety of different radiology and imaging services. We were feeling overwhelmed and under pressure, but had precious little time to openly react or otherwise respond to my diagnosis. Right now, we had to have my cancer staged and graded sooner than seemed humanly possible. I drank barium contrast and fasted for digestive system x-rays, I went on a clear liquid diet and temporarily stopped my meds for full-body PET scans, I repeated barium prep for CT scans, and fasted again for MRIs. My diet consisted mostly of chalky colon cleansers, plain water, 7-Up, chicken broth, boiled ham, and scrambled eggs during this time, which trifling as it sounds made me crave a juicy steak and pulpy fruit juice like nothing else. By the end of the month, I was allowed to give into my cravings for a night—a bittersweet reward at best—while we waited in high anxiety for my pending results to come in.

I had a greying, high-grade, stage II-B neoplasm, with partial bowel obstruction, which had enlarged to about three centimeters in size. The tumor had grown through the wall of my colon, but had not yet metastasized to my lymph nodes, bone marrow, or other organs. I did not yet have necrosis or jaundice either, but compromised liver function and tissue death were both very real concerns for me now. The fast-growing lump had apparently started out as a benign polyp, but had turned malignant having gone undiagnosed and untreated. I was relatively young, I’d never smoked, I didn’t drink or do drugs, and I wasn’t promiscuous, so nobody could easily explain how or why this was happening to me (as if those were the only reasons that something like this could happen to anyone). Likewise, no one could tell me how the polyp could have been missed, or why I was denied the medical attention that I had actively and continuously sought, which could have prevented my case of cancer altogether. I did finally and inexplicably get to stay off birth control pills this time though—and, coincidentally, my tumor never increased in size after I discontinued the use of oral contraceptives, hmmm…

The diagnostics and staging completed, we were then referred to a local oncologist, radiologist, surgeon, and hematologist for consultation, healthcare review, and treatment selection. The oncology specialist wanted to do an immediate total colectomy with long-term, post-surgery, high-dose chemotherapy port, and a permanent colostomy bag. The radiation specialist wanted to start with daily, low-dose, external beam radiation, personalized intensity modulation radiation therapy, and low-dose oral chemo, for six months. The surgical oncologist did not recommend surgery for temporary or permanent bowel resection or any surgical procedures for chemo pump placement—in fact, they suggested radiation with or without chemo. The hematology lab would be doing my tumor marker and blood panels one to three times per week as needed throughout my treatment, whichever option we chose. And, me–I wanted biological treatment, but it wasn’t covered by insurance, so I reluctantly had to settle for beam radiation and oral chemo in lieu of extreme abdominal resection surgery, since I wasn’t rich.

Next, everybody gave us the obligatory best-case/worst-case scenarios, after which I was scheduled for my radiation tattoos, body molds, and chemo instruction in preparation for my first treatments and corresponding blood monitoring tests. Having turned down radical surgery and the chemo port (per the surgeon specialist’s advice), my oncologist was suddenly and inconveniently unavailable to see me now. So, my radiologist had to reach the oncology nurse to confirm arrangements for my ongoing blood work and prescription refills, since her boss was neglecting to do so on a regular basis. The oncology nurse also secretly stepped in and reduced my chemo pill dosage by half without telling the oncologist (she told me not to tell him about it either), because as she said—off the record—he had prescribed me a dangerously high amount, comparable to that given to a terminal prostate cancer patient. I had to quit the job I loved, my husband had to stay at the one he hated, and I had to take incompletes and signup for medical leave at school…where only last year I had been hopeful, I was once again despondent.

Just one month into chemo-radiation, I quit menstruating, and was no longer able to be intimate with my husband (my still fairly new husband) for the duration of my treatment (my fairly long treatment). I lost all of my lower body hair from the bellybutton down, and went through major skin tone and skin color changes, along with startling food taste changes, and contemptible chemo fog. It had become a challenge for me just to get off the couch to catch a ride to the doctor’s, so much so that my time was predominantly spent asleep, in treatment, or in diagnostics, by this point. And, when it didn’t feel like things could get any worst, my husband’s company announced their looming bankruptcy and liquidation. That’s when the rejection letters for my previously pre-approved (and thus documented) life-saving medical procedures began to arrive from the insurance company. It’s also when we found out that because my husband’s employer was liquidating, not restructuring, that we would only qualify for one month, not one year, of COBRA benefits, and that the one month of COBRA coverage we were eligible for would cost us $1,300 even in light of the hundreds of thousands of dollars (literally $300,000+ in just one month of the bankruptcy/liquidation notice) in bills which had abruptly begun to flood our mailbox…

To read the final segment, click here.

Underinsured, Underdiagnosed and Anonymous: My Hormonal Hardships, Part 5

by Hormone Stories

Published on March 8, 2012

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My radiologist had actually become my primary doctor, as the oncologist remained largely unavailable to me, especially so after hearing the news that my health insurance would lapse within the coming months. The oncologist increased my dosage of radiation, and rescheduled my GI, endoscopy, and radiology follow-up exams to earlier dates. The radiation office not only waived a significant portion of their own service fees for me due to the situation, but also helped us to handle a big part of the lengthy medical dispute we were facing with our insurance company. They eradicated most of the tumor, but could not remove my residual scar tissue, before our COBRA expired. Even with all that they had done for us up until then, there were still strict systematic limits as to what they were permitted to do for us after that time. Not only was I without insurance yet again (my husband was too), but I was also now without the support system that had been my radiologist and their crew—something that was much much harder to overcome than I had expected it to be.

I was in remission, but back to square one as far as access to medical coverage went. I was in remission, but I had undergone medically-induced premature ovarian failure, and was deemed post-menopausal before I would even reach my thirties. I was in remission, but couldn’t take hormone replacement therapy or herbal alternatives, because I was already at increased risk for recurring and/or second cancers. I was in remission, but had semi-permanent radiation scars and temporary post-chemotherapy cognitive impairment. I was in remission, but I still wasn’t well enough to return to work, go to school full-time, or to take a belated and long overdue honeymoon yet. I was in remission, but I was depressed, and didn’t know how to move forward without the regular group of doctors and nurses who had been there for me emotionally only a week before.

Why was my life saved (and through such extreme measures), only to be put right back at risk, through the ever-incipient denial of insurance, medical assistance, and access to healthcare? What was the point of it all?? It felt like maybe I shouldn’t have been striving so hard to live, but instead perhaps that I should simply have accepted the inevitability of my own death (something I am now faced with every day that I do wake up in the morning, anyways). My husband had only been able to find part-time jobs, since his old workplace had closed. So, we knew that we would have to move out-of-state to get the help that we needed. We just hadn’t anticipated that it would be even harder to get coverage, aid, or access, once we left. And, we still don’t know how much harder it will get, as we continue to race border-state budget cuts and residency requirements, just trying to keep me alive. Sometimes, it’s hard not to doubt that we’ll make it in time at all.

I have always worked hard, and I’ve always tried to give back to the community. I was glad to pay my dues, and happy to put in my time. So, I have an exceptionally hard time understanding how so many have come to turn their backs on me as I ask them to help keep me from dying, if not from hurting, particularly when that’s supposed to be their job. How come I’m not worth your time and attention? Why don’t I deserve to live? What’s so wrong with me, that you can’t even tell me what’s wrong with me?

I wish that I could leave you with a happier ending, but this never-ending vicious cycle has not left us with much optimism, hope, or spare change, ourselves. Aside from knowing that my tumor is back, we don’t know just how bad it is. What we are gravely aware of is that I am out of the safety net and into the danger zone for lymph and bone involvement plus metastatic cancer growth. It’s proven impossible to get a standard colonoscopy and biopsy at my age (twenty-plus years too young) without a doctor’s order, and impossible to get a doctor’s order without insurance or assistance (but, you’ve already heard that story before). …all this, even in spite of my personal history of colon cancer… And, it will be equally impossible to get any traditional treatment if/when the cancer spreads to my liver or lungs, too. But, at least nobody will be talking about colostomy bags then, anymore. When we do find the rare body scanning clinic that will take cash patients on self-referral, they all also inevitable deny me the less-invasive virtual colonoscopy because I’m “still in my childbearing years” even though I’m medically documented as being POF, and haven’t had a period in over six years now. You’d think it would be a non-issue, but for some reason it isn’t. Maybe someone out there can understand our fear and despair, but a lot of other people just don’t seem to care.

I wrote my story anonymously because I fear the social repercussions and potential backlash of publicly revealing my real name in association with my disease and disorders. I am uninsured and told by many, uninsurable.

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