The Trump regime’s flood of attacks on democratic norms, rule of law, and vulnerable populations—most prominently its widely contested ban on immigrants and refugees from seven majority-Muslim countries—can seem calculated to induce outrage fatigue in Americans determined to oppose it. But it’s important not to lose sight of the fact that a repeal of the Affordable Care Act, also known as Obamacare, remains a high priority of this administration. A week before Trump’s inauguration, the Republican-controlled House and Senate took the first steps in dismantling Obama’s health-care law—which has helped provide medical insurance to roughly 20 million people over the past three years—with votes that set the stage for eliminating some of its most important provisions.
This year’s deadline to enroll for insurance through the ACA exchanges was January 31, and in the week preceding, the Trump administration attempted to stop all ACA-related advertising and outreach. Trump has promised repeatedly to repeal and replace the law, but so far the GOP has failed to provide a coherent proposal for a replacement—much less a replacement that would allow so many Americans to afford coverage. Losing the ACA would hit certain populations especially hard—among them people with preexisting conditions, the poor, and the self-employed, including artists and musicians.
Obama signed the Patient Protection and Affordable Care Act into law in 2010. It aimed to make health insurance less expensive for people with employer-provided plans and to reduce health care costs in general. Individual plans had previously cost too much for most Americans to afford on their own, but the ACA paved the way for government-administered state and federal exchanges through which people can buy insurance—more than 85 percent of those who’ve signed up via the exchanges have received subsidies to help cover the cost of their policies.
The law also expanded Medicaid eligibility, allowed young adults to stay on their parents’ plans till age 26, and barred insurers from denying coverage due to preexisting conditions—which include not just chronic illnesses but also, in a uniquely insurance-company way of viewing the world, pregnancy.
The most maligned component of the ACA is probably its insurance mandate, which requires that all eligible citizens get some form of health insurance or face a tax penalty. The mandate was intended to motivate healthy people to sign up through the exchanges, in order to spread out the cost of covering the sick—that is, to help insurance work the way it’s supposed to. The mandate also protects insurance companies’ profits in an attempt to keep them participating in the ACA marketplace.
This dynamic underlines the ACA’s major flaw—it diverts a vast amount of taxpayer money to insurance companies, and its effectiveness remains subject to their whims. Like any large, complex government program, it’s also ridiculously vulnerable to sabotage by political opponents. After the GOP fought for years against using Health and Human Services funds to pay insurers the full amount they’d been promised under the ACA, people who’d bought plans through the exchanges saw their premiums rise steeply, in some parts of the country more than 100 percent. (To be fair, subsidies rose along with premiums—and in other areas, premiums actually fell.) Another result of this obstructionism is that many insurance companies have sued the government and pulled out of the exchanges.
Despite its problems and limitations, though, the ACA reduced the proportion of uninsured adults from 17 percent in 2013 (right before the mandate took effect) to 11 percent in 2016, according to Gallup. And because the public and the insurance marketplace have adapted to the ACA, a repeal of its key provisions—the Medicaid expansion, the exchange subsidies, the individual and employer mandates—could cause such serious disruption that the country would be left worse off than before it was enacted.
A December 2016 paper by the Urban Institute (a think tank founded in 1968 by the Lyndon B. Johnson administration) predicts that by 2019 the number of uninsured people would rise from 28.9 million to 58.7 million, an increase to 21 percent of the nonelderly population. And whether or not you’re insured can be a matter of life or death.
A 2012 study published in the New England Journal of Medicine found significant reductions in mortality rates in states that had expanded Medicaid coverage. The year before the ACA passed, a study conducted at Harvard Medical School and Cambridge Health Alliance concluded that uninsured working-age adults have a 40 percent higher risk of death than their privately insured peers. And musicians are much more likely than the general population to be uninsured.
A 2013 survey of more than 3,400 musicians by the Future of Music Coalition (a nonprofit engaged in education, research, and advocacy) found that 43 percent didn’t have health insurance, well more than double the rate among working-age adults nationwide. Of those uninsured, 88 percent said they simply couldn’t afford coverage. Additionally, a survey of more than 2,200 artists conducted by the University of Westminster (and published by the charity Help Musicians UK) found that musicians suffer from depression and anxiety at greater rates than average, linking those struggles to their precarious working conditions, including difficulty making ends meet.
If you have a stable job and employer-provided health insurance, you may have a tough time imagining how hard it can be to make music for a living. “This is a population that is more vulnerable on this issue than the general population,” says Kevin Erickson, national organizing director for the Future of Music Coalition. “Musicians are often working on a freelance basis, balancing multiple gigs and income streams.”
Because few bosses will accommodate an employee who takes time off to play gigs or tour, most full-time musicians are shut out of employer-provided insurance. Their incomes often fluctuate wildly from month to month. Before the ACA, Erickson says, musicians generally couldn’t afford the individual plans offered by insurers—or else they failed to qualify for coverage due to preexisting conditions.
Preventive care is important to touring musicians, who often put in long hours without sleep, load heavy equipment, and do without healthy food on the road. But without affordable health insurance, it’s unlikely they’ll get such care, Erickson says. Illness, accident, or injury can easily end the career of musicians without insurance, if not bankrupt them.
The Future of Music Coalition hasn’t been able to secure funding for a follow-up survey to find out how many musicians have gained health insurance thanks to the ACA, but Erickson has plenty of anecotal evidence. “We’re seeing so many stories of musicians getting insurance for the first time,” he says, “so we anticipate the numbers of uninsured musicians to be way, way down.”
Even today, with the ACA still in full effect, uncertainty about the GOP’s plans for the law has thrown the insurance market into turmoil—more insurers may leave the program or hike their premiums, trying to hedge their bets against a repeal of the mandate or further Republican underfunding. And musicians are feeling the pain.
The Reader put out an open call inviting Chicago musicians to share their experiences with the ACA, and despite the taboos surrounding the public discussion of health and finances, more people replied than this piece could accommodate. The responses that the Reader elected to publish, which have been edited for clarity, call attention to the sacrifices these artists make in order to contribute to the city’s culture.
Che Smith, 39
Aka rapper Rhymefest
As the national debate builds about the repeal and replacement of the ACA, all I can do is contemplate how long a 39-year-old African-American male musician with type 2 diabetes can survive without proper care. That musician would be me.
Regardless of how many awards I’ve won, none of them came with cash prizes. The cost of health care is still an outrageous expense for many entrepreneurs.
I’ll be the first to admit that the ACA was far from perfect and even affordable, depending on the month in politics. However, I was able to get coverage that wasn’t previously available and a $20,000 cornea operation that saved my sight. That has to count for something.
Americans aren’t asking for “free stuff.”
We’re just asking our politicians to stop hurting their constituents by setting progress backward.
Ask yourself: How long can you live without the proper care? Let the answer be your guide to better policy.
Natalie Grace Alford, 29
Solo pop artist
I am a homemaker by day and musician by night. My fiancé supports me financially and has done so since I began having serious problems with bipolar disorder and post-traumatic stress disorder.
I was diagnosed when I was 24, but my serious breakdown began around age 26. I started to have vivid hallucinations, both audial and visual.
Part of the reason I quit my job as a waitress was because my symptoms were getting worse and worse. Believe me when I say the last place you want to have hallucinations is during a dinner rush with six full tables. It got to the point where I could not leave my apartment or I would begin crying and have an episode. I thought people were following me and going to attack me. I was suicidal every day, and I can’t begin to tell you how dangerous I was to myself. Before long I couldn’t listen to music. I’d get angry due to a delusional thought pattern in which songs reminded me of my failure as a musician. I refused to play or go to shows, and I wouldn’t see my friends.
I was a prisoner, and my mind was the warden. Because of this, I applied for Medicaid, and once I was approved I went to Community Counseling Centers of Chicago (C4), which saved my life. I finally saw a psychiatrist, started taking medication, and began group therapy.
I would have died by my own hand if it were not for the ACA’s Medicaid expansion. My medications cost around $400 a month combined, and they are the only reason I am able to go out, be active, and slowly but steadily work more. Because there’s no cure for bipolar disorder, I will always need treatment. My fiancé has decided to put me on his insurance, but I know that because of my preexisting condition, I will be a huge financial burden. I am currently worried about how much my medications are going to cost per month. But I know I need them, and we will be paying out of pocket. What makes me sad is that because of my mental illness, I will always be an emotional and financial burden to those I love the most.
Alison Chesley, 57
Aka cellist Helen Money
Before the ACA, I was without coverage for about 20 years. Getting coverage meant either getting a job or applying for insurance independently, which was incredibly difficult.
I’ve had asthma since I was two years old. Years of going to the emergency room well into my adult life meant that, if I applied for individual insurance, I’d either have to lie about my preexisting condition or, if I told the truth, know that the company might not accept me or cover anything related to my asthma. Because individual insurance plans were also incredibly expensive, it wasn’t an option for me anyway because I wasn’t making much money.
I made a commitment early in my life to be a musician. It’s very hard to find an employer that lets you take off time to tour and play shows. Also, spending hours at a “straight job” feels like throwing away something you’ve been given and you’ve nurtured for many years. At some point it’s just not a choice anymore—you do your art.
When Congress finally passed the ACA, it was such a relief to me. I signed up for a plan with a $3,000 deductible. I paid $80 per month and the government subsidized the rest. Finally I didn’t have to go to Cook County Hospital when I got sick, and I could do my music without sacrificing my health. The ACA has made a huge difference in my life. Being able to get a physical and have a regular doctor has allowed me to stay healthy, to focus on my music, to write and tour and teach and do what I’ve worked so long and hard to do.
Matt Piet, 30
I’ve been a freelance pianist and music instructor since I graduated from college in 2008. Health insurance wasn’t an issue for me until I turned 26 and was no longer covered by my parents’ plan. In 2013 I began applying for coverage. I had a history of mental health issues, with no other preexisting conditions, and I honestly disclosed my medical history on my applications for insurance. I was denied by several insurance companies, all of which cited my mental health disclosure as the sole reason for denying me coverage. I had no choice but to choose a provider that offered me a policy with a high monthly premium and no benefits worth noting.
In 2014 the ACA made it possible for me to find affordable coverage that allowed me to seek proper psychiatric care, which resulted in a bipolar-disorder diagnosis and subsequent psychotherapy and prescription drug coverage. I started taking a medication that, in my opinion, saved my life by minimizing my symptoms. This medication, along with psychotherapy, has allowed me to live a much more stable life. Without insurance, my medication would cost me over $2,000 per month. Without a diagnosis and treatment, I doubt I’d be able to focus on my creativity and be as proactive as I have been as an improviser in Chicago’s vibrant music scene.
As a freelance musician, there’s no way I could afford a higher premium and/or out-of-pocket drug costs. The medical care I received in the past few years has, without hyperbole, saved my life and my career. I don’t know where I would be without the ACA, and I am deeply concerned about what may happen if it is dismantled.
John Herndon, 50
Drummer in Tortoise
I signed up with the ACA but never used it. And the only reason I signed up in the first place was because I got fined almost $800 for not signing up the year before. After I got married in 2016, I switched to the insurance provided by her employer. I think that insurance is going to end in 2018, so we will most likely switch to whatever the mess ends up being.
Daniel Binaei, 42
Guitarist in Racetraitor
In 1998 I was on tour with my band Racetraitor. We were meeting up with Brother’s Keeper in Salt Lake City to watch their first show and then continue down the west coast with them. The morning after the show, our “roadie” and I were doing some very light sparring drills. He kicked me in the stomach and something felt very wrong. I realized I needed to go to the hospital to make sure I was OK.
Two years before this incident, I had been diagnosed with Crohn’s disease. I had also recently experienced a rough episode after a doctor prescribed me an anti-inflammatory that exacerbates the condition. I had been taking prescription steroids following this bad flare-up. When I went to the hospital, I found out my intestine had burst due to an undetected hole that was causing my intestine to develop gangrene.
Health insurance has been a constant concern for me over the years. Before the ACA, you could not reasonably buy health insurance with a preexisting condition. I was forced to work for a company that offered a group plan so I could get health insurance that would cover medications, and securing health insurance was a top priority.
The medication I am on now, Remicade, is an infusion that I get every two months. It costs $10,000 per treatment. It has been extremely effective. I lost 40 pounds when I was first diagnosed with Crohn’s disease. I have been able to gain and retain 30 pounds because of this medication.
Because of the ACA, I was able to quit my full-time job three years ago and work as an independent contractor. The ACA allowed me the opportunity to buy my own insurance and gave me the flexibility to leave town for recording and shows as needed while maintaining my own business. My plan costs $425 per month for a treatment that would otherwise cost between $60,000 to $100,000 a year. Before the ACA, I couldn’t accept offers to play with bands that would go on to become successful enough to become full-time jobs. If the ACA is repealed, I’ll be faced with the possibility of closing my business, and it may limit my ability to fully pursue opportunities with the recently reunited Racetraitor.
William Steffey, 46
Solo rock artist
Before the ACA, my premiums were about $600 per month. With the ACA and its applied tax credit, I pay only about $150 per month. I have bipolar disorder, so having health insurance is extra important for me. Before there was a generic version on the market, my medication cost $750 a month without insurance.
Without that medication, I invariably end up in the psych ward. The ACA made quite a difference in my life, and I don’t know how I’m going to get by without it!
Blaine Welsh, 27
Performs in the band Press
As someone who has been uninsured before, I can say that being on the ACA has been extremely beneficial to me, though there are still a plethora of issues with it.
When I was 19, I was diagnosed with general anxiety disorder with depression and obsessive-compulsive tendencies. I take a few different medications, some daily and some on an as-needed basis. I take Effexor daily. Without health insurance, it would cost me $71 per month. I take Xanax on an as-needed basis, and that prescription costs $12 per month. Currently, I pay nothing for these prescriptions. In order to stay on this medication, I have to see my doctor once every three months or he legally can’t prescribe me this medicine.
If I lose my insurance, I’ll end up paying $398 for my medicine and my required doctor visits every three months. This doesn’t include getting sick or any potential emergency room visits.
I am grateful for the ACA and critical of it—particularly the fact that health insurance companies, after a certain number of years, were allowed to back out, and that most companies have free rein on how much they raise their premiums. It’s ridiculous. But it’s better than not being covered at all.
Erin Page, 36
Guitarist and vocalist in Reivers, formerly Alma Negra
I grew up in a lower-middle-class family with two teachers for parents who struggled but who still took care of me. I’ve been plagued by chronic sinus problems since I was a child and subjected to endless doctor visits and a tonsillectomy.
After college, I had no insurance. I couldn’t afford it, because my sinus problems were considered a preexisting condition. One time I developed pneumonia because I couldn’t afford to go to the doctor and put it off. The doctor I eventually went to wanted to prescribe me antibiotics that cost $100 per pill. I sat and cried because I couldn’t even afford to be at the office in the first place. The doctor felt sorry for me and brought me free samples, and I cried more—but this time because I was relieved. By the time the ACA was implemented, which was a half decade after that doctor visit, I had taken many antibiotics and was plagued by an abundance of physical pain, including severe and recurrent migraine headaches.
Because of the ACA, I was finally able to see a specialist, who told me I basically had a sinus infection that had never been completely cured for most of my life. I was put on antibiotics and steroids for a month and monitored closely.
After getting sick every four months for more than 30 years, I’ve only had one sinus infection in the last two years. I’ve had to go to the emergency room twice in the past year for migraines, and if it weren’t for the ACA, I would never have received treatment for my condition. My stress levels have decreased because I know that, if I get sick, I can see a doctor—and I don’t have to wait until I’m almost dead to do so.
As the end of the ACA looms, I’m preparing myself to potentially go back to square one, and I fear I may possibly go broke or end up paying hospital bills for the rest of my life—despite the fact that I’ve worked and paid taxes since I was 14.
Carl Hauck, 29
Solo artist and Vocalist, guitarist, and synth player in Sunjacket
Since I was first hospitalized and diagnosed with Crohn’s disease as a junior in college, I’ve been fortunate enough to not have to worry about having access to quality health insurance. I was on my parents’ insurance plan up until the end of college. During my seven years as a high school English teacher after college, I was enrolled in a solid Blue Cross Blue Shield PPO plan offered by my employer. When I left teaching at the end of the 2015-2016 school year, I turned to the ACA marketplace. One of the reasons I felt secure in my decision to leave teaching and pursue freelance/part-time employment (alongside music) was the existence of the ACA, which offers protections for people like me who have preexisting conditions.
I quickly discovered, however, that the ACA was not without its problems. For example, in 2016, there was only one provider in the entire marketplace (Harken Health) that listed my GI doctor as in-network. Within a month of my enrollment in a Harken Health plan, I was informed via e-mail and letter that Harken would no longer be offering ACA marketplace coverage in 2017. When I searched for an alternative provider on the 2017 marketplace website, none of the listed plans covered my GI doctor or Humira (a self-injectable drug that I take weekly to prevent/reduce intestinal inflammation).
After spending several hours on the phone with various marketplace, insurance-company, and hospital-network representatives, I was told that if I enrolled in a specific Blue Cross Blue Shield HMO plan (with a monthly premium $50 higher than my already expensive 2016 PPO plan), I would be able to continue seeing my GI doctor, provided that I first scheduled an appointment with a primary-care doctor and had him/her refer me.
Despite these issues (and despite the well-documented need to make ACA plans more affordable), as a musician with a flexible employment situation (which makes touring possible), as someone who’s been hospitalized twice and had a colon-resection surgery, and as someone who requires annual colonoscopies, blood tests, DEXA scans, and Reclast infusions to stay healthy, I’m thankful for the ACA. Then again, as someone who believes that health care is a human right, I personally don’t think the ACA goes far enough.
With the prospect of the ACA’s inevitable repeal looming large, however, I’m worried about people drowning in the likely alternative: Republican-sponsored high-risk pools.
Kami de Chukwu, 24
Aka rapper Kami
My parents used to help me out with health care, and then last year I had to apply by myself because I had to get a physical and shots to go out of the country. I got insurance through Medicaid. Basically, if it weren’t for that, that stuff would have cost an arm and a leg. Luckily, I applied and I got the coverage I applied for.
I know a repeal will affect a large group of people and me, personally. I don’t know the logistics of what it would be moving forward or what to expect. That’s the biggest part of it. Insurance might become too expensive or unrealistic to pay for.
I feel like, especially because the whole point of the ACA is to make it accessible for everybody, without it health insurance becomes a thing like dental insurance. Health insurance isn’t a luxury. Without the ACA, it will be less commonplace for a regular person to have it.
Eiren Caffall, 45
When my nephrologist told me at 22 that I had polycystic kidney disease, he said I’d lose my kidneys in five years, never have children, be dependent on dialysis to survive, and maybe qualify for a transplant, only to be on life-saving drugs for that for the rest of my life. With PKD your kidneys are choked by multiplying, fluid-filled cysts, like they are slowly turning into organs made not of tissue but of bubble wrap.
During the years when I wrote and recorded my first records, I had no insurance at all. I was not allowed to purchase it, thanks to this preexisting condition. If I’m not insured, touring is impossible. If I’m on Medicaid, an accident at a gig in Maine could land me in a hospital that doesn’t accept Illinois Medicaid. And because I have a family history of illness and the poverty that goes with it, I don’t have a safety net of any kind to cover medical bills. Imagine trying to conduct a career when one wrong move can mean not only failure and physical collapse but also financial ruin.
When the Affordable Care Act came into law, everything changed for me. More than 20 years after my diagnosis, I could make music, work freelance (something I do to balance my frequent periods of illness and my parenting duties), and still purchase the right to care. This is my third year on the ACA, scraping together enough money to pay my premiums, but only just. But honestly, it’s too late for me to build a safety net that would make my career easier. I’m too sick now to take the risks I wanted to take when I first started.
Without the ACA I cannot get insurance. Without some theoretical future insurance, all my medical costs will be out of pocket. I am not currently on dialysis or facing a transplant, but I might be soon. Even so, I require regular blood work, blood-pressure monitoring, pain medication, and regular MRIs to check for brain aneurysm—something that PKD patients experience at an 80 percent higher rate, and something that killed my aunt.
An MRI can cost up to $3,500. My blood work (done every three to six months) costs $1,600, covered now by the ACA. A hospitalization a few years ago cost upwards of $10,000, not including the ambulance.
I might go onto dialysis, something that is largely covered, for now, by Medicare, but a transplant would be optimal. The cost in 2014 of a kidney transplant was $334,300, and that only covers 180 days of post-transplant costs. The transplant would save my life, but I’d require immunosuppressant drugs, which cost between $2,500 and $3,500 a month. For life.
It is enough that I have this disease, that I’m in constant pain, that my every decision is altered by PKD, that my partner, family, friends, and son have to cope with the emotional cost of it. Without the ACA, the illness will also cost us everything else—our home, our security, my child’s college tuition. The ACA meant that I had options. I could freelance, be a single parent, try to save money, and still be ill. Without the ACA, we’re ruined. The ACA meant I could imagine a time when I would be well, post-transplant—when I could sing without breathlessness and pain, tour without fear, and record with enough energy for the studio. Without it, I can’t picture a future for my career that is not deeply limited. By taking the ACA from me, and any other socially vulnerable musician, the country is making itself poor in every way we can be—in empathy, care, and art.
Jonathan Zeng, 34
Solo vocalist and tenor with the Grant Park Chorus, Chicago Fringe Opera, and the William Ferris Chorale
Until the implementation of the ACA, I went without health insurance for years. I’m a performing artist and teacher. I’m self-employed without the option of employer-provided health insurance. My income can vary pretty substantially from year to year, and since I am lucky enough to be in good health, without the need of any regular medications, it didn’t seem necessary for me to purchase my own plan.
When I finished graduate school and my school-provided health insurance expired, I went without insurance, knowing that I was one medical emergency away from financial turmoil. When the ACA came to be, I was nervous about the mandate and the possibility that I wouldn’t be able to afford a required plan. I was happy to find that, because of the subsidies provided, I could afford a plan—at the silver level, with dental even! My out-of-pocket expense has been under $125 a month, and hasn’t increased.
I’m thankful for the peace of mind that health insurance provides, the option to go to the doctor when I need it, and biannual dental cleanings/exams at no additional cost! If the ACA is repealed, I would not be able to replace my plan at a comparable rate.
I’m fortunate to have no preexisting health conditions, but millions of Americans aren’t so lucky, and many could not get insurance before the ACA. Those people’s lives literally depend on being able to afford quality, comprehensive health care. I truly hope that our new presidential administration considers the gravity of what’s at stake for the 20 million people who’ve gained health care thanks to the ACA, including self-employed artists like me.
Lakshmi Ramgopal, 32
Performs as Lykanthea
I just moved away from Chicago after 12 years living there. During my last year in the city, I was on the ACA. I couldn’t afford health insurance through the University of Chicago, where I was finishing my PhD (and which required I be insured in order to be enrolled).
The ACA was crucial for me. I was diagnosed with a degenerative neurological disease in January 2016, but had begun exhibiting symptoms the previous year (which included the loss of sight in my right eye for several months). Without the ACA, I would not have been able to receive the MRIs required for diagnosis or pay for my thrice-weekly injections, which cost $5,000 before insurance. Without insurance, it would have been impossible to finish school, much less make music or do much else.
I currently live in Northampton, Massachusetts, and am a visiting assistant professor of classics at Trinity College because I needed stable employment after I finished school. My plan was to move back to Chicago and freelance once I saved up enough money, and to get back on the ACA until I found full-time employment there. That is no longer possible. With insurance and medications, I can slow the inevitable physical and cognitive deterioration that this disease will bring to me. Without it, that deterioration will occur more swiftly. The loss of the ACA means I can’t return to Chicago.
Matthew Oliphant, 32
Hornist with Ensemble dal Niente, the Milwaukee Symphony Orchestra, Lyric Opera, and the Chicago Philharmonic
I’ve been a full-time freelance musician since 2009. In 2010 I was diagnosed with a seizure disorder. At the time I did not have health insurance. I was only a couple years out from college. I ignored it at first, but after a few incidents I decided I needed to see a neurologist. I was able to get a bare-bones insurance plan through the state of Illinois. The program was ICHIP (Illinois Comprehensive Health Insurance Plan).
After the ACA passed, I was able to get insurance through the now defunct Land of Lincoln Health. Since then I’ve had to change to Blue Cross Blue Shield. My premium spiked this year, but the coverage is good and I need it to pay for neurologist visits, medication, et cetera. I absolutely need health insurance because my medication can be very expensive, and I’m afraid that were the ACA repealed it would be unavailable to me due to my preexisting condition. v