Have you seen the baby on the NY Health Exchange website? For legislation plagued with inexhaustible ideologues, crawling subscription rates, and the Koch Brothers®, that baby has been a adorably reliable Patronus for a more humane, healthy society. I thank this baby personally for his efforts, if he’s reading this (or reading at all), for the times the already incomprehensible website stalled or coverage got progressively more opaque and discouraging; he kept New Yorkers calm. I sure needed him.
I’m one of many who’ve lived with a destabilizing, chronic disease and no insurance; been rejected by private insurance companies and their bottom lines; been rejected for expensive therapies; and paid thousands in one month for my medications. I’ve also partaken, reaped the benefits of, and been screwed by federally and/or state funded insurance. In three years my illness snowballed (a piss-coated, gray, lumpen New York snowball) into a litany of side effects and related issues, my paperwork and medical records strewn from Palo Alto to Katonah. I’ve also been healthy. I understand health is a matter of choice, chance, and luck, and that health does not last forever.
The Affordable Care Act (ACA) has been a hopeful but complicated prospect for myself and many others. But when the site went up (and down and further down, and up and down), the corporate loopholes started emerging and my state-funded pre-existing insurance plan was cancelled in preparation for the transition, I began defending the ACA like a new boyfriend at a cocktail party. I’d whisper to my moderate friends, “No, no! Obamacare’s not that bad. You just need to get to know it, or meet in a different setting where it’s appreciated. Or at a smaller party… it’s… it’s bad in groups.”
But it’s important to be hopeful; today, because of the ACA, I have hope.
In October 2010 I ran four miles a day and over-practiced yoga with other ferociously fit Brooklyn women. I worked, wrote, had a decent savings account, and my own apartment. No insurance—didn’t need it, couldn’t afford it anyway—but l was aware of and engaged in discourse on public vs. privatized healthcare. Watching my mother, who was dependent on Medicare yet deteriorating from Multiple Sclerosis, I understood how degrading illness can be. But I was healthy, foreseeably so. And at the end of October, I took a two-day vacation in the Maine woods.
A week later, I woke up with a stiff, painful neck. Unable to turn my head, I returned to work assuming it was a yoga injury. The pain progressed down my arm, occasionally spreading into numbness; I struggled with opening doors, picking things up, and washing dishes. Within weeks, pain zipped up my spine in electric currents. Then, neurological oddities: One night over burgers with my new boyfriend, I suddenly couldn’t swallow. My brain was a like camera with no card, the shutter clicking meaninglessly and my throat forgetting how to work. Next were cognitive problems, spelling words backward and looking at maps uncomprehendingly. My glands were on fire and I vomited every day, but nothing compared to the pain. Back spasms so prolonged and agonizing, I slept on the floor while my skin burned like parchment paper and my legs ached. Healthcare? Magically, instantly now mattered.
My indoctrination into the US healthcare maze began with sliding-scale clinic GPs whose cursory glances at my symptoms concluded with a shrugging “Fibromyalgia—a lot of women have it” and a bag filled with cheap antidepressants and depression pamphlets. I saw specialists, never requiring a referral because it was out of pocket. Rheumatologists, neurologists and PT’s didn’t have the time to solve me, only offer their singular perspectives. “In the US, specialists have no incentive to talk to each other,” a mystified chiropractor put it, “So, to me? Alignment issue”. A cheery Russian rheumatologist in Gravesend diagnosed my pain as “sad, pretty girl” with a raised eyebrow and prescribed me with Date Night. “Have your boyfriend take you to movie.”
I got shots, acupuncture, steroids, muscle relaxers, and lab work; new credit cards paid for everything and there were records on me everywhere. I let doctors and PAs administer any test they liked, once spending $3,000 for a four-minute nerve test. A famous therapist, trained under John Sarno and a grave sphinx in Hermes, charged me $180 a session to solicit my emotional eureka. Physical pain was a manifestation of stress, anxiety or grief; though worth a try, stress didn’t explain why I couldn’t spell anymore. I was obviously crazy. This was obviously in my head.
Previously, willfully ignorant to the language of deductibles, premiums, and co-insurance, I now begged for help like an enlightened and desperate Aesop character. But this was a pre-existing condition so I was routinely turned down.
It was August 2011 when a friend reminded me of the camping trip a year and lifetime before. I contacted a reasonably-priced specialist named WebMD about Lyme Disease, something I’d proposed to the Bellevue doctor. He’d scoffed, “Doctors take advantage of women like you. It’s a completely rare, over-diagnosed disease.”
It’s neither, I’d learn. In November of 2011, a series of tests from a private, expensive California lab confirmed four tick-borne co-infections. I sobbed with vindication and relief in front of BAM when they called with my results. Lyme Disease, a politicized, controversial disease I’d only heard about from Irene on The Real World is tough to detect, a monster to combat, and unprofitable for insurance companies and providers. Due to this, I was untreated for thirteen months while it damaged my joints, nerves, and endocrine system. This was due, in part, to Lyme’s ability to disguise itself as other ailments; but moreover it was due to bureaucracy, a systemic ‘patients come last’ mindset, and the tendency to inaccurately medicate and ignore what’s difficult to diagnose, especially in Stressed Out Women. Though I had my answers, that Maine weekend would prove hugely pertinent to the conversation on pre-existing conditions and the CDC and American insurance companies’ callous refusal to simply learn anything new.
My treatment—daily antibiotics and injections—cost up to $1,000 a month. Crying in public was now regular; pharmacists handed me tissues with my receipt for the $597 Bicillin injections that had, overnight, gone up to $641. I applied for assistance programs, none of which covered weird antibiotics; Lyme’s Disease is considered treatable with a thirty-day course of antibiotics, with anything generally beyond that “medically unnecessary”; the CDC refers to a nine-year-old study recommending merely four weeks of treatment for persistent symptoms. Even if I’d had insurance, most Lyme-literate doctors (the few there are), don’t take it because they won’t be reimbursed for treating a disease uncategorized as chronic. My doctor charges $550 an appointment; I’m one of hundreds of patients.
In September 2012, I made a generalized Facebook plea when letters to doctors, agencies, and my legislators failed. A friend I hadn’t seen in years saved my life. She, magically, worked for the NY Bridge Plan, a state-run and ACA-funded program specifically covering uninsured people with pre-existing conditions. Approved just one month later, the sky opened up, and I was suddenly allowed into the pageantry of the covered, Charlie Bucket with a golden insurance card. I could pay for meds and rent, and my antibiotics now cost in the double digits, not triple. In the home stretch for Obamacare, I was grateful. I was covered.
Until nine months later, when the plan was cancelled. In June 2013, I received a letter explaining the Bridge Plan was being eliminated. In its place, a vague and disorganized federally-run program evocatively named the Pre-Existing Condition Insurance Plan (PCIP), an interim transition plan to the Marketplace running through December 31st, 2013. As it was a new plan changing all benefits I’d received thus far from EmblemHealth, it would also hit a reset button on my deductibles, add 30% fees on covered services, and an out-of-pocket maximum of $6,250. Premiums were mailed to New Orleans, claims to Salt Lake City, and auto-enroll requests to St. Louis. The website was rudimentary and poorly detailed. Under the “what’s covered?” tab, it helpfully offered: “The PCIP covers a broad range of health benefits, including primary and specialty care, hospital care, and prescription drugs.” That’s it.
There was no network of providers, only the website’s recommendation you call your doctors and ask if they took the plan. I ended up back at clinics while paying for insurance. An ER visit (a hellhole and centerpiece of the ACA debate) resulted in an $11,000 bill.
I once asked a PCIP phone rep if she was glad this mess was ending. “Not really,” she replied, in what I thought was Company Man loyalty. She finished, “I mean, I’m going to be out of a job.” I, however, marked 12/31/13 in my calendar with three exclamation marks. Almost there, even though nobody, even the Administration, could really explain where “there” was.
But I chose my silver plan, took a believe-it-when-I-see-it approach to the tax credit, and a deep breath on January 1st. This time, I knew the language and loopholes, made receptionists list accepted insurances and covered treatments, repeat them, and then send them to me in writing.
In three years, I’ve been denied care and compassion, conquered physical devastation, and was charged sixty grand for the privilege. I have two jobs, a declining credit score, and seven credit cards; every time I do a balance transfer, I imagine droplets of red food coloring dripped into a teaspoon of water, then a glass, a bathtub. With each avoidance, my debt grows abstract, pinker, the number becoming practically conceptual.
But people are in far worse circumstances than I, who has healed significantly and would’ve sucked up the mandate even before that Maine weekend because I am aware the American system has been less of a market than an abattoir. The privatization of wellness, the suffering of the elderly, poor and chronically ill- these matter. We all pay for facets of infrastructure we don’t need right now. Everyone will need healthcare someday. Those who prefer to pretend they will never ride the roller coaster of healthy, sick, covered, not covered and sorta covered better recognize. I did.
Today, my plan is a medley of improvements and annoyances. And it makes me happy. It makes me normal. I have some normal problems, plus the persistent swollen glands, empty checking account, and a personal and political understanding of this fraught issue, one that bankrupts and humiliates. And I’m grateful.