HOLDING MY BREATH
The witty Groucho Marx crafted the hilarious line, “I refuse to belong to any club that will have me as a member.” For the past ten months I’ve thought often about Groucho’s wisecrack. I’ve tried hard to keep my sense of humor after I was unwillingly forced into a ‘club’ that insisted I become a member, even though I had no desire to join. After decades of paying thousands of dollars into the healthcare insurance system, I was suddenly blackballed.
My new ‘club’ has an estimated membership of more than 48 million. Rephrasing for more impact: this forced club, one that no one in their right mind would ever look to join, is made up of more than FORTY EIGHT MILLION MOTHERS, FATHERS, SONS, DAUGHTERS, GRANDPARENTS, and SOLDIERS…Over 48 million Americans. PEOPLE. It’s easy to dismiss humanity when numbers are this staggering. Our society has become quite adept at ‘numbing down’ when we hear arcane statistics. I believe allowing large figures to blur reality has become a coping skill- an evolved ‘glad that’s not me’ sense of self-protection that, when overused, dulls our compassion. (Maybe that’s why they’re called NUMBers. )
My husband and I have been lucky. Since our respective college graduations, we’ve both had jobs that provided employee health benefits. Once married, we evaluated which one of our plans was best suited to our needs. For 33 years, through one or the other of us, we (and through us, our children) have always been part of an employer group health insurance plan. So it never crossed our minds that we’d ever not have group health coverage, because that’s all we’d ever known. (Yes, we were myopic.)
When ‘Obamacare’ became the hot potato du jour facing relentless attacks from far right-wing Conservatives, one truth that was consistently pushed to the back burner was that the status quo of healthcare for taxpaying citizens was anything but healthy. “The $884-billion-a-year private health insurance industry, once a collection of home-grown, tax-exempt companies dedicated to fulfilling public service missions, has evolved into a Wall Street-driven profit machine controlled by the world’s biggest investment houses. Most of the shares of the largest health insurance companies are owned by huge financial institutions, and their top priority is maximizing returns on investments, not improving health.” [http://healthcareforamericanow.org/ourissues/health-insurance-industry/]
Despite the severely troubled economy, major healthcare insurance companies were dropping people with individual policies in order to increase earnings. Between 2009 and 2010, America’s top five health insurance companies increased their profits by a whopping 56% -- while another 2.7 million lost their private healthcare insurance. [http://abcnews.go.com/Health/HealthCare/health-insurers-post-record-profits/story?id=9818699 ]
In September 2011, despite the challenging economy, my husband left the company where he’d worked for twelve years and boldly launched his own business. I started looking for a full time job following a hiatus of taking care of our youngest child. Even more than wanting a company to hire me for my skill sets was my desire to find a job that would provide a good group health plan. In the meantime, we signed up for COBRA (the Consolidated Omnibus Budget Reconciliation Act that provides employees the right to pay the premiums to continue group health insurance even when they no longer work for a company.) Our payments—$1,500 a month—(yes, $18,000.00 a year) covered three people- My husband, myself and our (then) 17-year-old daughter. The slap of that sticker shock still lingers.
Because our daughter has epilepsy (thankfully, controlled with medication) we felt it imperative to spend this appalling amount of money. We needed to guarantee consistency in coverage just in case anything changed. President Obama had already enacted legislation guaranteeing coverage for all minors with pre-existing conditions. The Affordable Care Act (ACA/Obamacare) was now extremely relevant to our family. It was a tremendous relief to know that our daughter (then in high school and seizure-free for two years) could not be denied health insurance due to her pre-existing condition. She will live with epilepsy (and hopefully control it) for the rest of her life. Thankfully, she will never be denied health coverage because of it. Unfortunately, this signature legislation could not prevent insurance companies from marking up her coverage by a whopping 600%. (That’s not a typo. 600%.)
Silly us! Why did it take until now, when we had to drain our savings in order to cover the cost of COBRA and, at the same time, the expenses of starting a business--- to realize just how disgraceful healthcare insurance companies had become?
In November 2011, two months after my husband started his business, I was diagnosed with thyroid cancer. Surgery, scheduled for January 2012, was postponed when I contracted severe bronchitis. Finally, in April, I underwent a complete thyroidectomy. The operation lasted almost 5 hours, more than an hour longer than what the surgeon told us. When I awoke, I was stunned to find myself in the ICU. There had been an unexpected problem. It had taken the anesthesiologist more than an hour to get the breathing tube inserted correctly, so there was additional soreness and bruising. I remained in the hospital an extra day.
My husband and I thanked our lucky stars that we’d opted for COBRA. Because it was still a group plan we/I could not be denied coverage nor could our coverage be dropped. However, just because we had a strong group plan did not mean bills were payed. Even now, 20 months post surgery, errors in both hospital and doctor billings and insurance payments continue, and trying to figure it all out is the ultimate nightmare. I’ve since learned several things that further demonstrate our severely flawed healthcare system. First, it is quite common for hospitals to charge too much on patient bills—Hospitals throughout the country have overcharged to the tune of approximately $10 billion a year. [http://www.thirdage.com/money/how-to-avoid-outrageous-hospital-overcharges ] Perhaps this is because health insurance companies finagle hospitals to knock their bills down by up to 95%. [http://obamacarefacts.com/healthcare-facts.php ] (Maybe that’s why hospitals charge the proverbial $8 for a single aspirin.)
When I requested an itemized bill, I was told one would be mailed to me. When I didn’t receive one, I called back and insisted. I eventually received only a partial statement…in Sanskrit. I learned that most people don’t question their bills, let alone scrutinize them, and hospitals tend to count on that fact. I also became a ping-pong ball when I started making phone calls to resolve the mounting, unpaid bills arriving daily. The following is a replay of what I frequently encountered:
Insurance company representative: No, we never received a claim for that.
Me: I’ll call the hospital.
Hospital accounting representative: It shows that claim was submitted to your insurance company on May 5, 2012. Here’s the claim number.
Me: I’ve spoken with the hospital and that claim was submitted to you on May 5, 2012 and never paid. Here’s the claim number.
Insurance company representative: Oh, I see what happened. The bill was sent back to the hospital because they didn’t use the proper code.
Hospital accounting representative: I have no record of that bill ever being sent back.
(As the renowned character and diagnostic medical detective Dr. Greg House always said, “Everybody lies.”)
My experience was neither new or unique, nor was our mounting pile of unpaid bills. In 2008 it was reported that 79 million Americans had medical bill problems or were paying off medical debt. [http://www.eurekalert.org/pub_releases/2008-08/cf-7mu081908.php] And when the figures are tallied for 2013, an expected total of 2 million people will have been forced to file personal bankruptcy because of medical debt. Three out of every five filings are due to unpaid medical bills. [http://www.nerdwallet.com/blog/health/2013/06/19/nerdwallet-health-study-estimates-56-million-americans-65-struggle-medical-bills-2013/www.nerdwallet.com]
Between recovering from surgery, having follow up treatment, looking for a job, and trying to get the multi-level web of medical bills untangled, my days of cheerfully bounding out of bed to greet the day were not exactly frequent. Meantime, companies were still laying people off. Those that weren’t, were not hiring, and the minimal responses I’d received were from other states. Our 18 months (the maximum number of months allowed) of outrageously priced COBRA had flown by and would expire on February 28, 2013. For the first time ever, we were looking into an individual family plan, specifically, a policy for the three of us that was more affordable than COBRA.
I naively expected the process to be quick and easy. I started by using the internet, logging onto a well-advertised health insurance aggregate site. “This way,” I thought, “ insurance companies will come to me, the customer.” I was able to view a large number of sample plans that seemed very affordable, especially when compared to COBRA. But—what the heck?(WTH) - Not one of them was legit-at least, not in our state and not for our family. Of course, I didn’t find that out until after I’d submitted our phone number. Within forty five minutes, I received my first phone call-- from Florida. I also received calls from Georgia, New Jersey and California. (We live in Kansas. I never received a single call from anyone in our area.) Clearly, the aggregate website wasn’t going to work. But it did provide the five major health insurance companies in our area.
I began the tedious process of directly calling each company. Every time, an annoying computerized voice answered, telling me to “please listen closely to the entire menu before making [my] selection.” The list went on and on, and the annoying ‘roboperator’ was one more reminder of how impersonal life has become. I listened until finally hearing which number to select. I then waited (and sometimes waited and waited.) Once connected, I was first asked to provide each family members’ full legal name and birth date. Next I was asked to provide their current age. (Thank goodness these people don’t have to make change.) Then came a series of preliminary questions. “Do you or does anyone in your family smoke?” No. “Have you or has anyone in your family been in a car accident in the last five years?” WTH? What does a car accident have to do with signing up for an individual family health insurance plan? No. “Have you or has anyone in your family been arrested for a DUI?” Another WTH! No. Apparently, ‘no’ was the correct answer because a negative response led to another question…until… “Have you or has anyone in your family had any major surgeries in the last five years?” Strike one, two and three, all at once. My new name was ‘Pre-existing.’ Each representative, without any emotion, told me the same thing. “Don’t bother filling out an application. You don’t qualify, our company won’t cover you.”
“Why not?” I’d asked each time. Yes, I knew the answer, but I wanted to make them say it. I wanted to see if any of the representatives showed even an ounce of emotion when they swatted me away as if I were a bothersome gnat.
“Because you have a pre-existing condition.” Nope, no emotions. I was just another faceless number in their workday. (Had they had ‘compassionotomies’ in order to do their jobs?)
One (of the many) nights when I couldn’t sleep, I decided to investigate just what insurance companies considered to be a ‘pre-existing condition.’ What a rude awakening! (Yes, pun intended- Groucho would be proud.) How does anyone NOT have a pre-existing condition? Acne, ADD, ADHD, asthma, Asbergers, allergies, arthritis… there are more than 40 conditions listed- just under the letter ‘A’… And here’s another fact that should make every single woman in America fume: Domestic abuse and rape are also considered pre-existing conditions. [ http://www.vaughns-1-pagers.com/medicine/pre-existing-conditions.htm ]
Not one to give up, I tried a different approach, opting for an independent insurance agent. I hoped someone experienced who represented several companies would know the ins and outs, and be able to help get us through the process. Thus far, I’d not even made it to the application stage.
A friend suggested ‘Darin.’ I called immediately, despite being afraid he’d hear my history and blow me off. He didn’t. When he finished listening to a broad overview of our family he warned me that I was “going to be a challenge, but not necessarily insurmountable.” I felt hopeful. He also informed me that the application process for a single policy was “complicated.” Darin offered to meet in person and help me fill out our applications.
At 8:15 the next morning, we met at a quiet Starbucks. Darin was professional and knowledgeable. I listened to his obligatory company pitch all the while thinking, “Don’t worry, you’ve got our business. You’re my last hope. Please cut to the chase!” We started the long process of filling out the three applications. (Yay…?)
“What’s your birth date?” I gave him the month and the date. “What year?” (Great. Now he cuts to the chase.) Then came that question…the one I don’t even discuss with my husband. “What is your weight?” Darin wrote it down…in ink… and we trudged onward.
Holy crab! We’d reached a portion of my application that asked about my breasts: boobs, bonzolies, hooters, melons---whatever the preferred vernacular, my ‘anatomy’ was now being fully disclosed (dis-clothed?) in an encyclopedic-length questionnaire. “When was your last mammogram?” I was quietly trying to remember. Darin must have interpreted my silence as questioning the legitimacy of the application. “I’m sorry, but this is standard for an individual policy,” he said, showing me the form. He spoke the truth. The grilling continued with “Have you ever had an abnormal mammogram? Have you ever undergone plastic surgery for breast implants or enlargement?” (Was he kidding? I had three kids!) And then: Has anyone in your family ever had breast cancer? Names were not needed. I listed my maternal aunt of blessed memory, my paternal first cousin and my youngest sister.
When he finished writing, I finally said what had been sticking in my craw since we’d started the interrogation. “Darin, we’ve had health insurance with this same company through my previous employer. How come I never had to answer these types of questions or fill out an application like this before?”
“Because you’re now looking to obtain an individual health insurance plan, ” he answered, clearly thinking I must have swallowed stupid pills with my Orange Valencia. “There is no comparison between signing up for a company group plan and applying for an individual family plan. It’s like trying to compare apples to oranges.” (Or ‘cantaloupes’ to ‘watermelons?’)
We moved on to the next part of the application, and to another part of my anatomy. “What was the date of your last period?” he asked, avoiding eye contact. “How old were you when you first began menstruating?” followed by, “Are you sexually active?” and then “Have you had multiple sex partners?” (Who devised these questions? My husband’s application had nothing like this, and our daughter’s application was also sparse in the extremely personal detail section. Were insurance companies secret havens for perverts?) “Have you ever been pregnant?” “How many times have you been pregnant?” followed by “How many live births?” and then, “Vaginal or c-section?” How I wished I could think of a Groucho line to say…or something to break down these intrusive and embarrassing questions. But there wasn’t one. Groucho Marx lived well before the invasion of health insurance companies.
And then I heard them. Practically gleeful sounding words…and they were coming out of my mouth. I seemed to be announcing that my tubes were tied. My mind was multitasking, and a section of my brain figured that, if the insurance company knew I would never be an expense for maternity care, maybe that would help offset the fact that I’d had thyroid cancer. I’d noticed that pregnancy was also on the list of pre-existing conditions. Darin actually looked up at me. “Yes,” I continued, pointing to the application, signalling him to write it down. “I had my tubes tied right after our daughter was born.” I paused. I hadn’t been able to think of a Groucho line, so instead I looked Darin in the eye and said “I told my dr. to be sure to double knot them.” There! An injection of humor. And, an epic fail—Darin didn’t even crack half a smile. (Humorectomy?)
“That’s not necessary, the application doesn’t ask that,” he informed me, before moving on. His forehead looked damp. Did I get an annual pap smear? Had I ever had a pap smear test that came back abnormal? Was I ever treated for an STD? I’d been sitting in Starbucks with Darin for almost five hours, and I had a headache. I’d been answering intimate questions about my body…things my husband didn’t even know… that he’d been writing down on page after page of an application that would then be submitted to I-had-no-idea -how-many- people whose names and faces I would never know. Additionally, everything I knew about Darin was neatly printed on a tiny 2” x 3.5” business card. Everything Darin knew about me (and my husband and our daughter) filled forty-five 8.5” x 11” pages.
“Do you think you’ll get our applications through?” I asked when, finally, we finished.
“I hope so,” he answered as we shook hands to say goodbye. “And, if by any chance, your application is rejected, I will be sure to get you a letter that will prove that you’ve been denied.” (Gee. Wouldn’t that be something for the scrapbook.)
The next afternoon, I had my answer. I was declined by every company. I would not be able to obtain insurance for any amount of money. Once again, I heard that I was being denied because I have a pre-existing condition. But why was it a pre-existing condition? I’d already had the surgery. The cancer/my thyroid was gone. What was their problem? “Are you telling me that, after all these years of paying thousands of dollars into the system, now that I NEED healthcare insurance, not one of these companies will give it to me?” Yup, that’s what Darin was telling me. We’d paid into and been a high profit margin for decades. And now that I especially needed health insurance, I couldn’t have it. I was furious. Additionally, I felt like I was being punished because I’d had thyroid cancer…which, by the way, is today’s fastest growing cancer. [http://www.thyca.org/about/thyroid-cancer-facts/ ]
There was nothing else that Darin…or anyone…could do for me. Darin could recommend a plan for my husband and our daughter. In fact, he seemed anxious to do so. He had an ‘affordable’ plan that, just for the two of them with an extremely high deductible and fairly high copays would run somewhere close to $800 a month.
As for me, there were no organizations (like in other states) that I could join that would allow me to be part of a larger pool so that I could obtain healthcare as part of a group. Nor could I (like in other states) take a class at a state university and obtain health insurance through a group plan as a student. I looked into the Kansas high risk pool- twice- because the first time, I was certain that the incredibly high rate I was quoted was wrong. But, I was the one who was wrong. Both times I was quoted $900.00 a month…for just myself…for a catastrophic plan only…meaning it would not cover labs, drs. visits, prescriptions or, bascially, anything. However, if I ended up in the hospital, after our deductible of (sorry- it was so high, I can’t remember) it would THEN pay ‘up to’ 70%.
So, $900 a month for a catastrophic plan only, and, on top of that, my husband would be paying almost $800 a month for coverage for himself and our daughter and both plans offered lousy coverage, high deductibles and together cost MORE than our COBRA plan? Count me out!
If the first part of the ACA/Obamacare had been relevant to us before because of our daughter, its full passage now became my lifeline. And it was ten months away from going into effect. Federal funding, by this time, at least in our state, for PCIP (Pre-existing Condition Insurance Plans) had already maxed out. Why was every single direction ending in a dead end? Most significantly, what was going to happen to me now if I got sick? How was I going to have my necessary lab tests and follow up treatments to make certain my thyroid replacement medication was working and that the cancer wasn’t returning? What about other doctor visits that I’d been putting off?
Another Groucho Marx line popped into my head. “I’m not feeling very well. I need a doctor. Ring the nearest golf course.” This time, humor didn’t stop the wave of panic coming over me. I couldn’t seem to get enough air in my lungs—I remembered, as a kid, catching a hard hit 16” softball smack in my stomach- my diaphram- and having the wind knocked out of me. It was that same horrible feeling where you cannot catch your breath, and you fear you’re going to die…and then you start fearing that you won’t.
“Breathe,” I kept telling myself. Eventually it subsided, and when it did, I realized I’d experienced an ‘allegorical epiphany.’ My body was telling me what I should do for the next ten months. I was going to have to buck up and, figuratively, hold my breath. I was going to have to stay healthy. NO DOCTORS. NO LABS. NO CANCER FOLLOW UP. I simply could not afford to pay the high cost of out of pocket for healthcare. We already had a mountain of medical bills still unresolved; the last thing I was willing to do to my husband or family was to incur additional medical debt. I continued looking for a job with health benefits, hoping something would come through (but I think I had a better chance of winning the powerball.) Without a job with a group healthcare plan, the ACA/Obamacare was my only hope. I remember thinking, “What would I do if this landmark legislation wasn’t happening now?”
Franklin D. Roosevelt (who signed the bill for social security) had wanted an affordable healthcare program for Americans, but was forced to back off. Later, it was the AMA and doctors who forced Harry S Truman to back down when he tried to include universal healthcare in his Fair Deal Act of 1949. Several presidents talked about wanting affordable healthcare, but none had been able to pass legislation. Never before, however, had healthcare costs, along with the number of uninsured Americans, ever reached such heights. Would this time be different? I, and, more than likely, the 48 plus million other M.O.T.U.Cs (‘members of the uninsured club’) were counting on it.
My husband purchased a policy for himself and our daughter while I purchased a gigantic bottle of vitamin C and approximately 40 gallons worth of hand sanitizer in bottles of varying sizes. On March 1st, 2013, I figuratively began holding my breath. I often felt edgy, angry, betrayed, let down, frustrated and even embarrassed. Embarrassed. Because I didn’t have health insurance. This was not something we openly discussed with our friends or family- but for the few that knew, some just ‘didn’t get it.’ I think they thought I didn’t have insurance because we couldn’t afford it... not because I was denied it. If our friends couldn’t understand that the ACA/Obamacare was legislation to help middle class families who paid income taxes and didn’t qualify for Medicaid…or that it was also designed to help small businesses and entrepreneurs, like my husband, then no wonder people were afraid of it. Change is hard, especially if you don’t know what to expect.
More insomnia, more late nights. I read the original Obamacare plan. No, it wasn’t anywhere close to 2,000 pages- it was somewhere close to 800 before all the modifications. And most of it was legalese. But I was able to grasp parts of it, and did not understand why people thought it would lead to Socialism. Nor did I understand why people thought it was going to be too expensive. What did these folks think 48+ million uninsured Americans was costing our country? This was not a free ride-nor was it designed to be. THIS WAS NOT MEDICAID! It was designed to pool people together (just like large employer-benefit health plans and like the health insurance plans available to our federal government employees, including those members of Congress, who opt for healthcare insurance.) Pooling those not already in a pool made sense to me. We would still be paying for our insurance, but our cost factor for an individual family plan would not be so out of proportion.
But then there was CONGRESS….Never in my entire life have I ever felt such animosity towards a group of self-serving and out of touch politicians. Each time this private-interest controlled elitist group called for yet another vote on the ACA/Obamacare, I took it personally --because it affected me personally and I was ‘in it’ now. I cringed at the disrespect, the gaul, the lack of willingness to work across the aisle- and the millions of dollars spent on advertising by powerful anti-Obamacare corporations and organizations who wanted to spread fear and distrust. This particular do-nothing-except-for-anything-that-can-go-against-Obamacare Congress put party politics ahead of the well-being of the citizens they supposedly represent. Their 42 attempts to undermine the ACA/Obamacare was estimated to cost a whopping $55 million dollars.. [http://www.dailykos.com/story/2013/05/09/1207995/-Boehner-explains-why-House-will-waste-more-much-time-and-money-on-Obamacare-repeal# ] Like screaming toddlers who didn’t get their way, they continued ignoring the 48+ million and their lack of healthcare, and then went on to cut the SNAP program, which feeds hungry children living at or below the poverty line in the US. In our country. From there, they played ‘chicken’, holding the ACA/Obamacare hostage, eventually endangering the country by taking things so far, the federal government shut down. That $55 million estimated dollars our do-nothing Congress wasted pales when compared to the cost of shutting down the government. Ready? $24 billion. $24 BILLION DOLLARS. [http://swampland.time.com/2013/10/17/heres-what-the-government-shutdown-cost-the-economy/ ] The worst Republican Congress ever…and one whose behavior and lack of accomplishment for 2013 should have made EVERY American citizen sick.
It’s been a long ten months-- Because when you’ve had cancer, all things that go ‘bump in the night’ – the minor aches and pains that come with getting older along with the unexpected pains that you try to shrug off so you don’t become a hypochondriac and drive your family crazy-- all lead to the uncomfortable question---- “Could this be the ‘Big C’ coming back?” And when you don’t have the option to go to a doctor when you need to, or to obtain necessary bloodtests to check your numbers, ten months feels like an eternity. And what about the millions of others who’ve been forced to hold their breath a lot longer than me?
In December, I logged onto the healthcare.gov website. I spent just over thirty minutes filling out my profile and then continued with the application for myself, my husband and our daughter. “Here it comes,” I thought, remembering my 5 hours with Darin. But--- Was I on the right site? This application was short and easy…and far kinder, too. It didn’t ask for my weight- nor did it ask any questions about any parts of my anatomy. Nothing about it was intrusive. There was only one health-related question: Do you smoke? No, we don’t. As for the glitches that had plagued the site when it went live in October, I didn’t experience any of them. Not counting the time my husband and I took to examine and discuss which plan best suited our needs, the entire process took just over an hour. One hour. Sixty minutes. (Now there’s a number that’s easy to comprehend!)
But the real ‘moment’ hit me when I saw what kinds of healthplans were available for our family…all three of us…including me…and how much these plans would cost. (Far less than COBRA with equally strong coverage!) So when I actually read those numbers…when I saw them on my computer screen and they actually registered in my brain…and when I realized I would soon be able to go to the dr. again, I was overwhelmed. I started to weep. I wept for myself because it’s been a long, scary time… and I wept for the 48 to 52 millions of other people: mothers, fathers, sons, daughters, grandparents and soldiers who, like me, have been holding their breath.
Though I am but one ‘story’ of the estimated 48 plus million, I am one story, one person…and I will be the second person in our family who will greatly benefit from the ACA/Obamacare.
We’ve paid our first premium. And on Dec. 21, 2013, our new insurance cards arrived in the mail. It’s becoming real. I only have to hold my breath for two more days now and I’ll once again be able to see my doctors. I’ve made it this far. I’ll make it the rest of the way.
Thank you, President Obama! Thank you for not caving. Thank you for standing firm through it all. Thank you, Mr. President, and all others who worked so very hard for this landmark legislation. I hope that, as the ACA/Obamacare takes effect, problems will be minimal…because lives saved, perhaps even mine, will be monumental.
When the ball drops tomorrow night at midnight, don’t be surprised if you hear my voice cheering loudly above the rest, wherever you may be. Because I plan to welcome the new year … and our new ACA/Obamacare health insurance AT THE TOP OF MY LUNGS! And that’s something that’s a lot easier to do now that I will no longer have to hold my breath.
* * * * *
Debby K Simon (copyright December 2013)
No part of this story may be reproduced, in part or in full, without the expressed written knowledge of the author.
