From Musical Theatre to Journalism, a Look Into America’s Hellcare System
Shortly into her pregnancy with me, my mom found out that her workplace was switching insurance providers. It was 1989. She mentioned this to her gynecologist who informed her that, since she was technically pregnant before the policy switch, the pregnancy would be considered a preexisting condition and therefore no services related to it would be covered.
Luckily for my mom, her doctor happened to forget to mention the pregnancy in her official visitation records, so my mom’s prenatal visits and eventual C-section and 4 days in the hospital were covered by her new plan. I asked her how much all of those services would have set her and my dad back. She said she remembers looking at the explanation of benefits after my birth and being shocked at the number, which was in the tens of thousands.
What would have happened if she had been responsible for that giant hospital bill? “We may not have been able to buy our house,” my mom said.
This story haunts me because even though it was a happy ending for my family (no crippling medical debt; we did move to a nice house in the suburbs), it just goes to show how someone’s entire future can be impacted by health insurance. And doing everything “right” won’t protect you.
The US spent 3.6 trillion dollars on healthcare in 2018, an average of 11,174 per person. From 2009 to 2019, the average cost of family premiums increased by 54% and worker contributions increased by 71%, far outpacing the nation’s wage growth and inflation rates. Average annual deductibles have risen by over 50% since 2013. An estimated sixteen percent of Americans have medical debt in collections.
The US spends the most on healthcare out of the world’s wealthy nations and has the worst health outcomes.
To be perfectly honest, I didn’t think about healthcare until it became my responsibility. I grew up quite privileged with two working parents. My mom got excellent health coverage for our family through her employers. I didn’t grow up with a chronic condition like asthma or diabetes.
When I turned 26 I was confronted with an uncomfortable reality check: health insurance was bullshit! I started my 26th year in a full-time job but by the time I hit 27 I was freelancing. I purchased the Oscar Simple Secure plan which had a roughly $7,000.00 deductible. The few times I needed medical attention outside of preventative care, I’d find myself asking: is it worth it? The times I wasn’t stressing about it I found myself enraged: how come I was paying for something that seemed to offer me…nothing?
To me, the irony of Oscar’s Simple Secure plan was that it covered preventive services but nothing else. I’d simultaneously laugh and shudder when I’d think, ‘OK, so what if I do a preventative visit, only to find out something might be wrong…how would I afford to see a specialist?’
Around this time, I was creating musical sketch comedy with close friends under the name Heck No Techno. I started to talk about my health insurance bullshit at rehearsals, and it turned out we were all dealing with bullshit. Each meeting turned into a mini therapy session. We wrote a mini healthcare throughline that we performed as part of our sketch comedy show. At a pitch meeting at Caveat, an info-tainment theatre in Manhattan’s Lower East Side, we mentioned our healthcare storyline. The artistic director said, “what about an entire show about healthcare?”
We accepted the challenge and the result was Explanation of Benefits, a musical about the history of health insurance and its current implications. We combined research, stories from friends, families, and our own lives, plus some fantastical elements like a personified devil character. The show seeks to answer the question on so many people’s minds: when it comes to health insurance in America, how the hell did we get here?
In Fall of 2019 we participated in Caveat’s incubator series and we wrote another episode of the show called AcciDental, which explores why dental and medical care are separate in terms of professional training and insurance coverage. Reporter Dan Weissmann, the producer of the Kaiser Health News podcast, An Arm and a Leg, paid us a visit and featured us on one of his episodes.
The more we performed the more people shared their own horror stories with us. One friend of mine was forced to go on a highly toxic chemo drug for months because it was cheaper than the actual drug meant to treat her rheumatoid arthritis. This practice is a cost-saving measure used by many insurance companies called fail-first or step therapy. After going through all of that, doctors in France where she now lives doubt RA was even the correct diagnosis.
Another friend, a lawyer, had a series of surprise bills, including one for a supposedly “free” IUD insertion. Hearing her stories really made it clear to me: it doesn’t matter what you do. These days, whether you’re a freelancer, working for a non-profit, or working as a successful attorney, your health insurance is most likely garbage that you still have to pay for. Insurance is a costly middleman that only adds complication and stress. And to be put through stress and confusion when you’re in a health crisis, that is simply inhumane. But that’s our system.
COVID-19 has obviously made everything worse, with millions more Americans un or underemployed, un or underinsured, and facing severe financial hardship and food insecurity. And while the coronavirus pandemic has resulted in over a quarter of a million deaths and cost millions their livelihoods, UnitedHealth, the nation’s largest commercial health insurer, reported $3.2 billion in profits for Q3 2020.
This pandemic has highlighted the major flaws of our system: how nonsensical it is for health insurance to be tied to employment status, and how a system that focuses only on short-term gains will not do well under emergency circumstances which call for advanced investment, resources, and preparation.
EOB is still creating content and doing livestream shows once in a while, but COVID-19 severely disrupted live theatre as we know it. That’s why I decided to attend grad school at CUNY’s Social Journalism program. I chose the program because they seemed excited about someone like me, someone who was doing a kind of journalism, but definitely not the traditional kind.
I was also drawn to the idea the program espouses, that journalism at its best should be done in collaboration with and service to communities.
While I know I want my work in grad school to revolve around healthcare, it’s been difficult to define a specific community, because who isn’t impacted by healthcare in this country? What I’ve decided for now is that I want to use my time and resources while in school to support people and organizations who I call healthcare changemakers. I define this as folks or orgs who are working to improve the healthcare experience for everyday patients, whether from inside or outside of the system, whether through direct action, research, or resource creation.
It’s still a broad group but it’s certainly narrower than everyone in the United States.
I’m still in the phase of doing research and connecting and listening to people. I’ve talked to medical actors, doctors, nurses, activists, and people who have healthcare questions and concerns.
One of these conversations led me to become involved with a new organization, Healthcare for the People, which provides free healthcare services in Brooklyn as a form of protest. I’ve been using what I’ve learned in my Social Media Tools class (thank you Luis!) to help them figure out the best ways to present their information and offerings.
One idea that stands out in terms of a project is the creation of resources to help people navigate this confusing system. One of the most successful parts of EOB was the self-defense against medicine portion, which was essentially common-place scenarios that we’d act out on stage, like how to ask your doctor about costs before committing to a procedure. I’d like to expand on this work, because I think it’s possible for it to be both entertaining and useful.
My friend and past collaborator Courtney Brame, executive director of Something Positive for Positive People, has amazing ideas on resources that could help connect people to sex-positive medical providers, ones who know how to deliver STI diagnoses appropriately and with the patient’s short and long-term mental health in mind. What I love about his idea is the companion piece to it: a provider toolkit that would teach good protocols over bad protocols when it comes to diagnosis delivery and aftercare. Providers are so important to this conversation: the more understanding and empathetic they can be when it comes to patients’ mental health and financial wellbeing, the more likely this system will change.
When it comes to healthcare projects or research, the possibilities are, sadly, endless. To me what’s important is creating work that helps people feel less alone, less ashamed, and less confused when it comes to their healthcare experiences. So stay tuned!