All My Pre-Existing Conditions and Me

Like most people my age, I found out that the American Health Care Act of 2017 (AHCA) had passed the House of Representatives via social media. My Twitter feed was filled with outrage about defunding Planned Parenthood and so my rage focused there, too. I wrote my representatives, composed a tweet of my own, decided to donate my time and money, and vowed that the next time I saw some old, white men protesting outside of my local Health Center I would give them more than just a dirty look. I thought that was the worst of it.

But the next day, I saw #IAmAPreExistingCondition trending on Twitter, and after that, my entire outlook on the AHCA changed. As I scrolled through the tweets, it hit me that the AHCA could destroy more than just my reproductive rights. It could ruin my whole life.

I had never had to deal with insurance issues like this before. I was covered under my mother’s insurance until I took my first job —ironically enough, working in a phone bank for a company that mainly denied appeals for Medicare coverage— and none of my health struggles emerged until months after I’d been hired. Too late for Blue Cross Blue Shield to hold them against me. When I switched to insurance I selected under the Health Insurance Marketplace in 2015, no insurance provider could deny me coverage, raise my premiums, or refuse to pay for benefits because of a pre-existing condition. The same held true when I became a Massachusetts resident in 2016 and applied for MassHealth. I didn’t even know how many pre-existing conditions I had. I panicked, googled “American Health Care Act pre-existing conditions,” and read everything I could find from reliable sources.

According to The Henry J. Kaiser Family Foundation, CNN, Time, Rolling Stone, New York Magazine, the Center for Medicare and Medicaid Services (CMS), and NH Health Cost, I have 17 pre-existing conditions that, before the ACA took effect, insurers could have used as an excuse to refuse to cover me or to severely raise my premiums, including:

• A mild-to-moderate alcohol use disorder.
• Back pain.
• Mental disorders, including: Mild agoraphobia. Anxiety. ADHD. Bipolar disorder. Complex post-traumatic stress disorder (C-PTSD). Depression. Seasonal affective disorder.
• Menstrual irregularities.
• Sleep disorders, including:
• BruxismREM Sleep Behavior Disorder.
• Trauma as a result of domestic violence and sexual assault.

Oh, and I guess I should also mention that I’m into BDSM and being choked, as those are sexual masochism disorders listed in the DSM-V. Why? Because according to experts interviewed by Time, having a “sexual deviation or disorder” could be a problem. Considering the Vice President’s stance on LGBTQ+ rights, being a queer, gender non-conforming, polyamorous woman who often wears men’s clothes may also be an issue, especially since it’s in my psychiatrist’s files.

This brings my grand total to 19 pre-existing conditions. If you count my sexuality, dating lifestyle and gender expression, that’s 22. Based on my family history, I’m at risk for three more—Alzheimer’s, breast cancer, and diabetes— and since I’ve applied for disability twice, that could also factor against me, according to Senator Sherrod Brown (D-OH). It can take no more than one of my medical conditions to disqualify me from coverage or to make my premium so high as to be unaffordable.

Right now, I pay almost nothing for health care. I live in Massachusetts and qualify for MassHealth CarePlus based largely on my income; since I don’t make more than 133 percent of the federal poverty level ($1,305 a month), I don’t pay premiums or copayments. I haven’t had to enter treatment for alcohol abuse, but if I did, it would be completely covered. When I threw out my back (again) a few months ago, all my treatment was covered, and when I ended up in the hospital because the muscle relaxants I was prescribed gave me serotonin syndrome, I never received a bill. I see my trauma therapist and psychiatrist and attend group therapy for free, and when I went for four hours of neuropsychological testing to confirm my ADHD diagnosis, all it cost me was time. The same was true when I got an IUD (at Planned Parenthood, bless them), which I use for birth control and to eliminate my formerly monstrous periods.

Are you getting the picture? None of my pre-existing conditions affect my life in any way because I’m covered by a system that’s essentially the same as the Affordable Care Act. The only costs I incur are for my six medications: Seroquel, two types of Depakote, Klonopin, Effexor, and Adderall. They each cost $3.65 per month, $21.90 all told. That’s the extent of the financial obligation to my health, apart from prescriptions for routine things, like strep throat (I’m prone to it) or UTIs and yeast infections. Even then, there’s some wiggle room. According to my MassHealth handbook, I never have to pay more than $250 in any given year for prescriptions and if I can’t afford a copayment, all I have to do is tell my pharmacist. Legally, they still have to give my the medication and the fee is “put on my tab,” as it were.

If I applied for insurance under AHCA policies and was denied, I would end up paying around $100 per hour for therapy, $125 to 285 per hour for psychiatry, about $50 per session for group therapy, and $588.42 for my medications (using a discount card). My basic mental health care costs would be $1,688.42 to $2,328.42 per month, hundreds more than I make. Even by cutting every possible cost (canceling my cell phone, placing the full burden of household expenses on my partner, and never spending a cent on clothes, personal care products, or other “extras”), I’d still come up short.

There is also the possibility that, if Massachusetts adopted the AHCA’s guidelines, I would end up in a high-risk insurance pool, a state-created health care market for people who are especially sick or who were denied other health insurance coverage. The problem is that whereas “normal” insurance companies receive premiums from healthy people to cover the costs of the sick, no such offset exists in these pools. As a result, premiums and deductibles skyrocket, yearly and lifetime coverage costs can be limited, and what coverage there is tends to be inadequate. Even still, people end up on waitlists for this impotent insurance because there isn’t enough funding to meet demand.

But let’s say I could afford a premium of $298.75 to $478 per month, a deductible of about $10,000 per year, and that I wouldn’t end up on a waitlist. Even then, I’d most likely be subject to a waiting period during which treatment for my pre-existing conditions would not be covered. As of 2013, Massachusetts’ group health plans allowed a maximum exclusion period —the period during which insurers can refuse to cover treatment related to pre-existing conditions— of six months, half a year in which I’d be paying that $1,688.42 to $2,328.42 a month, plus hundreds more for insurance that wouldn’t cover my basic needs.

Since my treatment and medication would cost so much with insurance, I might even be tempted to go without—as I imagine many others in my situation would. However, Section 133 of the bill would almost eliminate any desire to get coverage if my financial situation changed; it forces insurers to increase premiums by 30 percent for anyone with a break in coverage of 62 days or more. Anyone with pre-existing conditions, especially those who also experience financial difficulty, would be practically legislated into debt, whether they chose to seek coverage or not.

The state itself might not even feel that it’s worthwhile to make a high-risk pool. Section 132 of the AHCA states that in order to receive their share of funding to create these pools, they have to match federal funds “at a rate that grows from 7 percent in 2020 to 50 percent in 2026.” That probably has something to do with the AHCA also repealing the tanning tax and the Net Investment Income Tax, and would allow insurance companies to deduct employee salaries of $500,000 or more. Hey, the money to take care of sick people has to come from somewhere. But it won’t be from tanning salons that cause skin cancer or the richest 2 percent of the population. Certainly not from the insurance companies that pay next to nothing in taxes, anyway.

My worries about the AHCA extend beyond my own health. My partner, to whom I’m committed in all but marriage, has often helped me financially. He works full time at a marketing firm and his paychecks are steady, whereas mine are sporadic. I pay any bills under my own name, but we negotiate rent, food, and creature comforts based on the state of my checking account. I mention this only because he has four pre-existing conditions of his own: ADHD, anemia, depression and hypertension, and has a family history of seven more: addiction, asthma, brain cancer, high cholesterol, obesity, sleep apnea, and ulcers.

Although he receives health insurance through his employer, he’s still not safe. The mandate that large employers must provide affordable health insurance to their employees would be repealed under the AHCA, as would the penalty for large employers that don’t cover essential health benefits, like pregnancy costs and preventative medicine (not to mention the mental health coverage we both need). His company might decide to cut costs in one of two ways: by offering cheap plans that don’t cover essential benefits, or by offering expensive plans that do. Either way, his plan couldn’t deny or change his coverage based on the AHCA, but if we were to throw aside our choice of commitment and marry so I could be covered as his dependent, we might not be able to afford it due to my health history.

If the AHCA were to pass, I’d be left in a precarious situation. Under AHCA policies, cost sharing for low-income individuals like myself would be gone by 2020, as would the premium assisted tax credit, which allows me to receive a return on the unused amount come tax time. The heightened costs of health care (or going without care due to those costs) would push my anxiety through the roof. I have already been admitted to inpatient psychiatric units twice for this reason, and, under the AHCA, I’m sure I would soon be back.

According to the Department of Health and Human Services, there were 67 million women who met the narrow definition of a pre-existing condition in 2014, 8 million people in my age group (25 to 34), and 45 million Americans who qualified on the basis of a behavioral health disorder. I may be just one, but I am one among millions whose lives would be irreparably sabotaged by the American Health Care Act, a bill that treats the health of American citizens with anything but care.

Liz Lazzara is an androgyne writer, editor, and activist specializing in mental health, addiction, and trauma. They have written online copy for rehab centers, and essays, narrative nonfiction, and journalism for multiple online and print publications. They are currently working on a manuscript about complex post-traumatic stress disorder and addiction, and they are affiliated with Active Minds, the Mental Health America Advocacy Network, the National Alliance on Mental Illness (NAMI), the National Association of Memoir Writers, the Nonfiction Authors Association, No Stigmas, and the One Love Foundation. You can find their entire body of work at LizLazzara.com.