The Cost of Cancer

Given my own medical history—surgeries, chemotherapy, radiation, lions, tigers and bears—I am beyond biased when it comes to talk about healthcare and its costs. My bias is so strong that I am pretty sure I’m physically incapable of listening to Speaker Paul Ryan talk about healthcare without having a rage stroke.

RYAN: I’m not. Number one, health care is a complicated and very emotional personal issue. And we completely understand that. The system is failing. We’re stepping in front of it and rescuing people from a collapsing system.

And more importantly, we’re keeping our word. That’s really important here, George. People expect their elected leaders, if they run and campaign on doing something, they expect them to do that. And that’s what we’re doing. We’re keeping our word.

And I would argue that we would spell disaster for ourselves, politically, if that’s your question, if we go back on our word. This is us keeping our word. But most importantly, it’s us trying to fix a real problem that real people are experiencing in this country.

Gosh, I loathe this guy.

Sure, Speaker Ryan, a great way to fix a “real problem” in this country is to cost 24 million people access to healthcare. Next up, y’all should fix the real problem of animal abuse by legalizing dog fighting, or fixing the real problem of the opioid crisis by shutting down drug rehab centers.

Meanwhile, having health insurance alone is not a guarantee that one will emerge from a health crisis financially unscathed. Cancer, specifically, will cost you. No matter where you are in life, it will cost you, especially if you are single and younger.

I often wonder if most (and by most, I mean politicians) understand the different costs that come with being diagnosed cancer and all that treatment entails: co-pays, deductibles, medication, transportation, parking fees, as well as loss of income whenever you have to take time off work for appointments or treatments.

When insurance companies work their absolute darndest to make paying out your claims an Olympic-level feat or the drugs you need become so expensive that you cannot afford it, then those other costs add up quickly.

Cancer drug costs themselves are astounding. The drugs keep going up and up and up, all the while your pay remains the same or lessens because of all the time you need to take off. A July 1, 2015 US News report stated that “Out of the nearly $374 billion Americans spent on prescriptions in 2014, $32.6 billion – about 9 percent – was spent on oncology drugs, according to the annual report by IMS Health Informatics,” and “Patients typically pay 20 to 30 percent out of pocket for drugs, so an average year’s worth of new drugs would cost $24,000 to $36,000 in addition to health insurance premiums.”

When someone is sick and cannot afford their medication, it’s not like the medication fairy comes down and gives them the medication regardless. If a cancer patient needs a treatment that may save their life but they cannot afford it because it’s not covered under their insurance, then it’s not like they are going to get that medication anyway. That’s not how the system works.

Most of us experience what is called financial toxicity, defined by StatNews.com as “the problem of paying for cancer.”  The article stated further:

According to the [National Cancer] Institute, when a loved one develops cancer, the family’s risk of significant financial hardship becomes startlingly high:

• Between 33 percent and 80 percent of cancer survivors exhaust their savings to finance medical expenses.
• Up to 34 percent borrow money from friends or family to pay for care.
• For those who fall into debt, the level of debt is substantial. In a study of colon cancer survivors in Washington state, the mean debt was $26,860.
• Bankruptcy rates among cancer survivors are 260 percent higher than among similar households without cancer.

A November 20, 2012 study published in The Oncologist examined the financial toxicity of treatment, and what it found, should make anyone who thinks the current healthcare system is fine just the way it is be completely ashamed of themselves:

Insured patients undergoing cancer treatment and seeking copayment assistance experience considerable subjective financial burden, and they may alter their care to defray out-of-pocket expenses. Health insurance does not eliminate financial distress or health disparities among cancer patients.

Let’s say that one again for anyone who may not be listening: Health insurance does not eliminate financial distress or health disparities among cancer patients.

Discussing the price of cancer drug costs further, A December 13, 2016 Forbes article stated, “Many can’t afford out-of-pocket cancer drug costs until they meet their insurance deductibles, so they don’t take their meds, skimp on doses or wait before filling prescriptions.”

Recently, a March 15, 2017 NPR article reported: “One-quarter of all cancer patients chose not to fill a prescription due to cost, according to a 2013 study in The Oncologist. And about 20 percent filled only part of a prescription or took less than the prescribed amount. Given that more than 1.6 million Americans are likely to be diagnosed with cancer this year, that suggests 168,000 to 405,000 ration their own prescription use.”

I would have been completely and utterly decimated by cancer treatment if it wasn’t for my ex-boyfriend who supported me. The bills would have swallowed me whole, and he is the reason I kept afloat and didn’t have to move back home with my parents. I missed a lot of work. Copays and parking fees added up quickly.

A May 16, 2013 article published by CBSNews.com stated that “people with cancer were more than 2.5 times more likely to declare bankruptcy than people without cancer, with the likelihood even greater in younger patients.” The article further stated that “cancer patients who filed for bankruptcy were more likely to be younger, women and not white, the researchers found.” This is the part of the article that made go, well of course.

The authors point out that since a cancer diagnosis is often a sudden life event, younger patients’ bankruptcies may be influenced by preexisting debt, not having as many assets, having more dependent children and not having supplemental income of others in the household at the time of diagnosis.

When a young person is diagnosed with cancer, they are still waist deep in student loans. They haven’t been in the work force that long so their savings are slim to none and their salary can barely cover standard living expenses. When a catastrophic event like cancer occurs, how are they going to fully cover all the costs that come with a diagnosis?

A January 5, 2016 Reuters article reported that “one third of working-age cancer survivors go into debt, and 3 percent file for bankruptcy.” The article cited a 2012 survey using data from 4,719 cancer survivors between 18 and 64, and one-third had gone into debt and in more than half of those cases, the debt was above $10,000. The article indicated that three percent had filed for bankruptcy.

For all of those who believe that everything is fine and the system doesn’t need any intervention, I have a question to ask: have you ever been sick? Do you know anyone who has ever been sick or cared about anyone who has ever gone through a major illness?

Cancer is not a punishment. Cancer certainly does not mean you have some moral failing. Both good and bad people become diagnosed with cancer every day. Every day folks who were going about their days had their lives completely upended by this disease: infants, kids, teens, adults or the elderly. Anyone. Cancer does not discriminate.

This country has some pretty messed up priorities where we can people that they should lose everything they have and/or choose between medication or food (the modern day’s Sophie’s Choice, I guess?). Politicians and those right-leaning folks screaming how they don’t want the government involved in healthcare don’t seem to care or mind when their fellow citizens lose everything while insurance companies and drug companies make profits left and right.

Profits over people, huh?

How is this right? Please, someone tell me how any of this is right because I honestly do not understand.

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The Affordable Care Act

When I was six months old, I had three benign tumors removed from my body. According to my dad, I had one on the top of my head, on my back and in my groin.  Before I could even crawl or walk, I became someone with a pre-existing condition.   During my senior year of college, I had a benign tumor removed from my right breast. Before I even graduated college, I had established a pre-existing condition for tumors in my breast.

When I graduated college, I didn’t have a job lined up and worked part-time jobs in retail. My dad kept me on his insurance for as long as he could, and when I had to get off his insurance, I had catastrophe only coverage until I got a job in my field.

For as long as I could remember, my dad stressed to me that I always needed insurance because if I had a gap, I would have an impossible time getting coverage again because of pre-existing conditions.  Since my body had the tendency to form tumors for some unknown reason. I had a pre-existing condition since I was six months old.

I have wanted to go back to school for my master’s degree, but could never figure out a way to do so while maintaining health insurance.  I could not risk having a gap in my coverage. While I did not quite understanding the intricacies in health care insurance in my early- and mid-twenties, all I knew was that I could not have a gap.  I stayed at jobs that I didn’t want to because I needed healthcare insurance coverage.

Since 2010, I have undergone more medical tests and surgeries than most have in their entire lives. I have had the following: a lumpectomy, seven rounds of chemotherapy, full thyroidectomy, 35 rounds of radiation, a laparoscopic procedure to drain an ovarian cyst, a double mastectomy, four months of reconstruction, a tissue expander exchange surgery, a superficial cyst removed from my right fake boob, and a major surgery to remove my right ovary and the aforementioned cyst that grew back and doubled in size.  In addition to all of these procedures and surgeries, I have had countless doctor’s office visits and blood draws, as well as a handful of CT scans and MRIs.

My first chemotherapy – the least expensive option and the one all insurance companies insist that doctors try first – ended with me going into anaphylaxis. The remaining six chemotherapy treatments were the most expensive ones – Abraxane

I. Am. Expensive. To. Keep. Alive.

I never asked for this. I don’t revel in this, and I would trade this body of mine for one that does not do this. Seriously, I would trade in a heartbeat. My body forms cysts and tumors – sometimes malignant but the majority have been benign – without warning or explanation. Maybe there’s a reason or condition that I have, but as of right now, I don’t know.

A refresher on the ACA and the protections it was designed to provide:

This protection gave me the most peace of mind:

“Insurance companies can’t set a dollar limit on what they spend on essential health benefits for your care during the entire time you’re enrolled in that plan.”

My insurance company cannot drop me for being too expensive. I can focus on being healthy first and foremost, not worried that the next surgery will cost me my health insurance.

This protection gave me comfort and relief:

“Under current law, health insurance companies can’t refuse to cover you or charge you more just because you have a ‘pre-existing condition’ — that is, a health problem you had before the date that new health coverage starts.”

I am not married, and I own a home. Heaven forbid I lose my job (please God, do not let this happen), I am on my own. Sometimes events happen which are out of our control. Illness and chronic conditions are not punishments for misdeeds or moral failures. Sometimes bad things happen for no reason, and that is terrifying to admit and understand. I don’t know when the next cyst or tumor is going to come. I would like to think I am done with them but history has demonstrated that won’t be the case.

If I lose my insurance but still need a surgery or treatment to get myself back to good health, I either have two options: bankruptcy caused by medical bills or just not having the surgery or treatment because I don’t have a literal money tree in my backyard.  Men and women in the U.S. are forced into bankruptcy at an alarmingly frequent rate because of medical bills.

With or without insurance, being sick is costly. Co-pays, missed time from work, gas to doctor’s appointments, parking fees, deductibles, medication, so on.

When I come across comments online from other Americans who don’t know that “Obamacare” is also the same as the ACA, or believe that people without healthcare are just lazy folks who don’t work hard enough, part of my soul dies a little. Good health is a gift, not a guarantee.  I have yet to come across someone bitching about “Obamacare” who is lower- and middle-class and have gone through extreme medical trauma and hardship.

Despite having scars from literally the top of my head to my knees, I became a marathoner. I have finished 10 half marathons, one marathon, two 10-mile races, and numerous 10K and 5K races, well as other distances.

You know what made all of those races possible?  Answer: access to healthcare, which includes surgeries, medication, chemotherapy, radiation, scans, whatever.  If I have the ability, then I am always going to strive to be a runner first.  I know I’m always going to be the one who has “the problems,” or who seen as “sick all the time.” I don’t want to be that person. I want to be a runner who kicks ass and takes name.

If the politicians allow lifetime caps and pre-existing conditions to come back, then my dreams of running marathons in cities all over the country or world will disappear.  I want to live a life full of purpose, goals and accomplishments. If my insurance company is free to impose lifetime bans or drop coverage for me for whatever reason they want, then I will be the person that “Obamacare” opponents hate: someone on Medicaid.

Damned if you do, damned if you don’t.

To the Nurse Practitioner at St. Clair Hospital,

Remember me?  I am the woman who came to be with her boyfriend, a stubborn man who would rather be anywhere else in the world except a hospital, and you dismissed the two of us like a pair of hypochondriacs.  I have never encountered a nurse, doctor or nurse practitioner as rude, condescending and dismissive as you were today.  I am a professional sickie, and I encounter nurses and doctors all the time.  You, whoever you were, were insufferable and rude.

A grown man, who until recently has been the picture of decent health, came in and said he had been sick for going on three months and hasn’t been able to fight any virus or infection in the last couple of months.  He said he has been light headed and have been feeling pain in his shoulders and lower back.  He told you that he has been to a doctor as well as urgent care in the previous month, and he keeps getting worse.  What do you do?  You order a chest xray, a flu swab and a CT of his sinuses.  When all of that came back clear, you came in and had absolutely no patience at all with any follow up questions.

Why are you in the healthcare field, which involves helping people, if you’re such a bitch?  I was not being rude at all.  I was being a concerned loved one for someone who has been sick for months.  You talked down to me, even talking to me SLOWER like I am learning impaired.

667

I have never been so angry and furious in recent years.  My sick loved one came to get help, answers, and you behaved as if he was overreacting, like apparently it is NORMAL to be sick for weeks on end?  That’s not normal.  This is not normal.  He should be able to get better, and he has been consistently sick for a long time.

Commenting that you thought I wasn’t understanding what you were saying was rude, condescending and awful.  The look you interpreted as not understanding words, as if I am learning impaired, was the look of a girlfriend who wanted to launch out of her chair and beat you senseless.  You made someone I love and care about feel hopeless and upset, and hours later, I am wondering why someone like you is dealing with sick people if you hate people so much.

Worst worst patient care I have witnessed.  Congrats, St. Clair.  I’ll make sure to never visit your hospital.  I’ll keep my sickie ailments to Allegheny Health System.