Guest Posts, Health, The Body

Why We Must Remain Vigilant: An Affordable Care Act Story

April 3, 2017

By Jenny Giering

For me, the repeal of the Affordable Care Act is a life and death issue.

I used to define myself in various ways: a musician, a mother, a wife, a yoga devotee, a cook. Some friends (and my husband) called me the Energizer Bunny. Now: I am the poster child for Universal Health care.

The day I got my breast cancer diagnosis, I was in the process of re-certifying through the Massachusetts Health Connector (Massachusetts’ version of the state health insurance exchanges) for the following calendar year. My local Navigator, a local public health official trained to help with the application process, told me about Massachusetts’ Breast and Cervical Cancer Treatment Program, a Medicaid initiative designed to cover middle and low-income women through their treatments. We were relieved to discover I qualified. Our two children were simultaneously enrolled in MassHealth (Massachusetts’ Medicaid program) and their care became free as well. This was what saved our family from financial ruin.

My family is in many ways the typical American nuclear unit. My husband and I have two children. We work incredibly hard. We own a home. We have no consumer debt. We paid back every dime on our student loans. We diligently contribute to our self-funded retirement accounts. In short, we are fiscally responsible people. This hasn’t been easy, as my husband and I have spent our entire careers in the arts. I write music; my husband is a novelist, a playwright, and a medical writer.

We have never known the comfort of having an employer-sponsored plan. We appreciate the freedom of freelance life, and take seriously the extra burdens, including making our own social security payments, Medicare contributions, estimated taxes, and buying health care plans. We have purchased health insurance on the individual markets our entire adult lives, never letting our insurance lapse. Despite the pain of the enormous price tag, we’ve always recognized our responsibilities as citizens to account for our health care costs.

We were thrilled at the passage of the Affordable Care Act because, for the first time, we had adequate coverage for our family. Our deductibles shrank. We lost the dreaded co-insurance provision – a cost-sharing tool that still requires you to fund a portion of your health care costs even after you’ve paid your huge deductible (and the premiums). We knew we could prepare financially should we face the worst.

Then, I got breast cancer.

It was early, but widespread. I endured 5 surgeries including a full mastectomy and reconstruction. Almost immediately, I developed serious, chronic complications from my treatment. So severe and strange were my symptoms that my team of endless “ologists” was out of ideas. After 12 months of failing health, I was bedbound: crippled with joint pain and exhaustion, neuropathy, vision disruption, neurological and cognitive deficits so severe I could hardly hold a conversation or stand without falling.

My parents started coming to help my husband take care of me. Our lives spiraled into chaos as I wasted away with an illness no one could explain.

On the day my primary care doctor finally, defeated, told us we had to transfer my care to Boston (more than 2 hours away), my mother, a PhD in the pharmaceutical industry, burned the midnight oil and stumbled across a 2013 Dutch Cohort study of women suffering from systemic complaints from silicone implants. We immediately sent the study to our team and I had emergency surgery two days later.

A year later, I have recovered only minimally. The syndrome that developed from my cancer treatment is so rare and under-studied here in the States that my doctors seek the advice of teams in Holland and Israel to care for me. I am on a thousand dollars of medication a month. These medications give me a modicum of function and keep my systemic pain at bay enough for me to drive my son to school, and shop for groceries, but not much else. My only hope for recovery may be expensive Intravenous Immunoglobulin treatment, for which MassHealth denied my request. We are waiting to hear about an appeal as my health seems to deteriorate by the day. The cost is well into five figures, so obviously it’s a treatment we could not consider without insurance. It’s a shot in the dark. My doctors are uncertain whether I will ever be well again.

The passage of the Affordable Care Act did more to shore up our little family than any other piece of legislation in my lifetime. It allowed me to face my grave illness with the comfort of knowing cost would not be a factor in whether I could have a certain treatment or try a new medication. It has allowed us to breathe a little easier as we use our resources to provide a loving, enriching environment for our young son and financial support for our teenage daughter.

Health care is an inalienable right. It is a human right. Health care is not something that should be “shopped for.” Price comparison shopping may seem like a wonderful market-driven design, but in reality it forces people to confront the terrifying calculus of much care they need vs how much can actually afford. The sicker one is, the harder it is to bring those two forces into line. Access to health care should not be dependent on one’s disposable income. It should be available to everyone. And that’s why it’s so maddening to see the Republicans gunning to replace the ACA with Health Savings Accounts.

This is nothing but a disingenuous transfer of cost to the consumer. In what world do they think that, even if one could put together the $6,750 to fund the account for a year, it would be adequate in the face of a policy that costs $24,000 in premiums alone? That Health Savings Account is tapped out after one trip to the emergency room. How can you ask those Americans, already on the edge, fighting for their lives, many unable to work because of their health, to suddenly discover a golden pot of $6,750 to sink into one of those tax-sheltered accounts? These plans are clearly dispatched by those who don’t have to depend on their health insurance for their lives. It’s the equivalent of offering a patient an Advil for an amputation.

Why are we the only first-world country without a single-payer health system? Does our ideology really prevent us from looking at the health outcomes in other Western countries and seeing the exponential benefits and cost savings a single-payer system would provide? Why does the love of capitalism hold sway over the fact that a free-market health care system leaves the sickest of us, the most vulnerable, unarmed and unprepared to face the excruciating choices when there is not enough money to pay for all the care one needs? In what world is the solution to make the poorest and sickest pay more for their care?

I have no idea what 2018 will look like for me and my family. But it is likely we will face premiums of $24,000 or more for a plan that would, again, let us sleep at night. Our premiums will be 30% of our income. That’s more than our mortgage. Last year, we also had $15,000 in uncovered medical expenses. We are on track to surpass that number this year, the year in which, by the way, our daughter starts college.

My husband and I are hardworking Americans, grateful for the safety net that has buoyed us in our darkest hour. We are terrified to see what happens when our government prioritizes capitalist theology over the lives of its people. The politicians have made it clear that they don’t care about what happens to my family or to me, much less my body. We must pay attention and remain vigilant as those in Washington look for new ways to prevent us from getting medical treatment we need. This is not a partisan issue. This is an issue of human decency.

Jenny Giering is a musician, composer, and solo artist who holds degrees in Music from Harvard & Radcliffe Colleges and an MFA from the Graduate Musical Theatre Writing Program at NYU’s Tisch School for the Arts. She has received many awards and residencies for her compositions. Her most recent project was “Saint-Ex,” a musical journey through the life of Antoine de Saint-Exupéry, which won the Weston Playhouse Theatre Company New Musical Award and had its world premiere in 2014 at the Weston Playhouse Theatre Co., in Weston, VT. She lives in Massachusetts with her husband and two children.

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