| How To
Resist I’m a Person—Not a Pre-Existing Condition
“The worst days I’ve ever known could be my future under the American Health Care Act.”
Imagine that you’re bombarded with anxiety, with worries of multiple attacks coming your way, unable to predict when they’ll come or how to stop them. Imagine waking each morning not knowing which road bipolar disorder will lead you down—you might be filled with a constant flow of energy and a superhuman belief that you can do whatever you wish without consequence, or burdened by hopelessness and the idea that maybe death will make it stop. Imagine wanting nothing more than to plan, organize, and focus, while ADHD forces your attention to sway between duties and distractions. Imagine living a life of accumulated fear and pain until your inevitable traumas force you into a feeling of worthless solitude. Imagine dreading sleep each night because you might wake up punching or biting, soaking in sweat, struggling to catch your breath in the wake of a night terror.
I don’t have to imagine. These are my diagnoses, and they run me ragged every day. I’ve managed to find stability with the help of a trauma therapist, a psychiatrist, several medications, and a growing list of books, but no support system is perfect. Mine has failed me before. Last November, a combination of an inadequate dose of my mood stabilizer, an intense schedule, and the passage of my anniversary with my estranged husband sent me into a tornado of despair. I began to question my relationship with my partner, and the resulting pain for both of us made me believe I would never find peace. I went out one night with a paring knife, paper and a pen, and wrote what I thought would be my last words: It wasn’t your fault. It wasn’t because I didn’t love you or you didn’t love me. It was all too heavy and too much for one person.
When I tried to cut, I started to cry and realized how cold I was; how much I wanted to be inside and safe. Soon after, I entered an inpatient psychiatric ward. They remedied my medications, offered grief and trauma counseling that put my separation in perspective, and I eventually left knowing I would be all right. Now, the same remedies and resources that saved my life—the prescriptions, psychiatry, therapy and everything else—is in danger of vanishing in an instant, or else being flung so far out of my reach it would be impossible to get them back. The worst days I’ve ever known could be my future under the American Health Care Act (AHCA).
I am aware there are serious doubts about whether the AHCA could pass the Senate as it recently passed the House of Representatives. Although Senate Republicans are opting to use reconciliation (a process that allows for expedited consideration of certain bills, mainly by prohibiting filibusters and limiting the opportunity of amendments) in the hope of passing the AHCA with a simple majority, they hold only a four-person lead. Some Republicans have voiced concerns about the bill, making this a tighter race than it was in the House. But Trump only had a 28.6 percent chance of winning the presidency as of Voting Day, so it’s harder than ever for me to trust predictions. I’m too frightened by what this bill proposes.
According to information from the 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 seventeen pre-existing conditions: eight mental disorders, trauma related to both rape and domestic violence, two sleep disorders, a mild-to-moderate alcohol use disorder, back pain, and menstrual irregularities. Currently, I am covered by MassHealth CarePlus , which has eliminated almost all of my health care costs. This privilege is largely due to the fact that, as someone who lives with severe mental illness, I cannot work enough to earn a living wage. Just to qualify for CarePlus, I had to prove that I didn’t make more than 133 percent of the federal poverty level.
I depend on this subsidy to receive all the essential health benefits of the Affordable Care Act; however, I’ve mainly used three: mental health services, prescription drugs, and laboratory services. Trauma counseling, psychiatry, group therapy, neuropsychological testing, blood work to check my medication levels, and even two stays in an inpatient psychiatric facility—all were completely covered when I needed them. I’ve never even seen a bill, apart from the cost ($21.90 per month) of my six prescription medications.
However, Section 131 of the AHCA aims to cancel cost-sharing reductions for “low-income individuals” after 2019. This one change alone would leave me in a near-impossible situation were Massachusetts to adopt the bill’s standards. Without financial help from the government, I’ve determined that I would not be able to afford health insurance. I got quotes from the top insurance companies in Massachusetts: Blue Cross Blue Shield, Tufts Health Plan, Harvard Pilgrim Health Care, and Minuteman Health. Blue Cross Blue Shield’s cheapest plan would cost $279.76 a month in premiums, and a $6,800 deductible per year before the plan began to pay. Tufts’s cheapest plan would cost $321.82 a month in premiums, and a $3,300 deductible per year before the plan began to pay. They would also require copays of $40 per visit to a primary care doctor or a therapist, a $1000 copay if I ever needed inpatient psychiatric help again, and anywhere from $35-200 for each of my prescription drugs. Harvard Pilgrim’s cheapest plan would cost $381.53 a month in premiums, and a $3,100 deductible per year. I’d also have to pay a $40 copay for counseling, a $10 copay for group therapy, and a 20 percent coinsurance if I was ever hospitalized for mental illness. Minuteman’s cheapest plan would be $226.98 per month, with a $3,400 deductible, $75 for bloodwork, $25 per prescription, and a $50 copay for counseling.
I couldn’t afford any one of these plans—and these quotes are based on the assumption that I’m healthy. As of 2013 , Massachusetts insurance companies had a six-month “look-back period,” meaning they could search for any pre-existing conditions in the past six months of your medical records and use what they found to alter your insurance policy. Massachusetts didn’t employ the option of an insurance rider, which would permanently deny coverage for all pre-existing conditions, but they did have a six-month exclusion period, during which coverage for these conditions would automatically be denied. Essentially, this means I would be hung out to dry. Not only would I be unable to afford even the cheapest health plans, but I would pay for most of my care out of pocket, especially in the first six months.
Those costs are extraordinarily high. Therapy tends to cost around $100 per hour , while psychiatric care can range from $125-285 per hour (and I go to both every week). Group therapy, which I will soon be attending weekly, is about $50 per session . As for my medications, they would cost $588.42 using a discount card. Barring any “normal” health issues that would require a visit to my PCP, urgent care, or the emergency room, I would pay between $1,688.42 and $2,328.42 per month just to ensure my mental health remained stable enough to keep me out of the hospital. Even if I were to focus solely on keeping myself medicated, cutting all forms of therapy and cutting every possible cost at home, I would still be hundreds of dollars short of the cost of my sanity. I never want to be that girl with the knife again. Not ever.
But that’s not all that’s at stake for me. In many of my pieces published online and in my therapist’s notes, I have identified myself as queer and gender-nonconforming, and, according to an article in Time , “sexual deviation or disorder” is also listed as a pre-existing condition. Vice President Mike Pence has made many statements about people like me that turn my skin into gooseflesh. On the website for his 2000 congressional campaign, he stated that “Congress should oppose any effort to put gay and lesbian relationships on an equal legal status with heterosexual marriage,” and “Congress should oppose any effort to recognize homosexuals as a ‘discreet and insular minority’ entitled to the protection of anti-discrimination laws similar to those extended to women and ethnic minorities.” Pence also legalized the use of “religious beliefs” to refuse service to the LGBTQ+ community in Indiana, signed a bill to jail same-sex couples who applied for marriage licenses (along with the clerks who supplied the license and the officiant who performed the ceremony), and declared his opposition to gay marriage with the statement that “societal collapse was always brought about following an advent of the deterioration of marriage and family.” The implications of “sexual deviation or disorder” being listed as a pre-existing condition under the AHCA are most chilling when I consider this past statement b y P e n c e : “Resources should be directed toward those institutions which provide assistance to those seeking to change their sexual behavior.” The meaning here is undeniable: Government money should be spent on “ conversion therapy .”
I have only recently discovered the joy of embracing life as a queer, gender-nonconforming woman. It’s easy now to be out to anyone in my life, to shop in the men’s section of stores as well as the women’s, to embrace my androgyny and attraction in all its forms. I’ve lived so long without knowing the truth about who I was. Now that I’m finally living that truth, ignorance and bigotry could legislate me back into the closet or into “treatment” I don’t need.
My life may depend on whether the American Health Care Act passes the Senate. And even if it doesn’t pass, I now know where my government stands. To them, I am a combination of faults for which I need to pay. I am a sick person who should not be helped to get better. I am a deviant who ought to be punished until I change. But I know better: I am a person. I am not a pre-existing condition.