7 Musicians on Navigating the American Health-care System

In her February Grammy acceptance speech, Chappell Roan known as on file labels to “offer a livable wage and health care, notably to increasing artists.” Just a few month later, damaged-down Original York Dolls entrance man David Johansen died at 75, comely weeks after launching a GoFundMe to conceal the bills from his most cancers treatment. As gig workers within the truest sense, musicians and masses of others within the industry flee into the identical roadblocks to decent treatment and insurance because the sensible American, however their occupation amplifies the problems to unbearable volumes.

“Around 50 to 55 p.c of the final inhabitants has medical health insurance thru their employer. In song, it’s about 19 to 20 p.c,” says Theresa Wolters, vice-president of health and human products and services at MusiCares, the Recording Academy’s charitable arm. While acts on the three predominant labels are eligible to in discovering SAG-AFTRA protection, the handiest choices for many artists are costly plans from the Life like Care Act marketplace, generally with excessive deductibles and minute preventative protection. “They possess medical health insurance — they comely can’t put it to use on memoir of they may be able to’t possess enough money the deductible or the out-of-pocket charges,” Wolters says.

Unlike the wage at a typical job, musicians’ earnings varies broadly from month to month, making it a field to preserve up with premiums and even non-public enough to preserve insured. “Royalty compensation used to be an field even before streaming, and most musicians aren’t getting paid out of an near,” Kevin Erickson, director of the Method forward for Song Coalition, says. “Some decrease-earnings musicians fall into that hole where they’re now not making enough for a subsidized ACA conception however aren’t eligible for Medicaid in their dispute. There’s somewhat a few acute monetary terror.”

The physical and psychological tolls of elevated touring generally lead many musicians to push apart or delay therapies they need, which will then snowball into big scientific bills or worse. “Even as you happen to discover a severe damage or illness, even with the handiest insurance, a musician is in deep disaster,” says Aric Steinberg, executive director of Sweet Relief Musicians Fund. “The bulk of them can blow thru their financial savings in a month or two. Even as you happen to in discovering most cancers, that you just may perchance in discovering chemo covered, however your recovery is now not. And with the full gigs you miss, no one’s reimbursing you.”

The previous five years — with the pandemic, inflation, and now the Trump administration’s goal of kicking millions off Medicaid — possess handiest made things worse, in accordance to Michelle Lewis, who co-founded the advocacy nonprofit Songwriters of North The usa, or SONA, with Letters to Cleo’s Kay Hanley. “We customary to listen to every few months a few songwriter who couldn’t possess enough money surgical operation or needed to quit the industrial. Since COVID, it’s came about on a customary basis,” she says. “Songwriters are peaceable getting the smallest sever of the streaming pie, so many don’t possess health care. Our basis has grants for psychological-health strengthen and masses of scientific charges — it’s now not insurance, however it and not using a doubt’s one thing.”

To if truth be told know the way abysmal the American scientific procedure is for musicians, we spoke to seven artists grappling with each managing and affording their health care. Listed here are their tales in their delight in phrases, from harrowing to hopeful.

“You can’t ration epilepsy medication for a kid or deliver, ‘We can’t possess enough money it this month.’”
Photo: Daniel DeSlover/Sipa USA/Alamy

From 1994 to 2004, I received somewhat a few radio play and my songs would in discovering on a TV brand or movie, so I was in a region to in discovering SAG advantages. I had two teenagers, one of whom had a really shocking health terror in infancy that required intubation and two weeks within the NICU. The bill used to be insane, however on memoir of I had medical health insurance, I didn’t need to pay out of pocket for it. But in 2005, I misplaced my health care on memoir of I didn’t non-public enough money to satisfy SAG’s earnings requirement. I’m repeatedly at the mercy of the union: If I’m in a region to in discovering my affirm on a brand, I’m in a position to rack up enough contracts to hit my earnings. But when somebody else sings one thing I wrote, it doesn’t depend toward my earnings, and if I non-public a penny now not up to the brink, I in discovering kicked off insurance. When that came about, each person in our household had a preexisting situation. My daughter, who used to be in grade school then, has epilepsy, and my son had existence-threatening RSV as an minute one. I needed to poke on COBRA, which, for a household of 4, is now a whopping $2,700 a month.

I’ve also struggled with alcoholism and dependancy, and it used to be in 2010 when those chickens came dwelling to roost. I stumbled on myself hospitalized and on the lookout for treatment on a bunch of masses of times and had no manner to pay. It used to be a upsetting time, having to be a money affected person and attempting to conflict a lethal field with substance abuse. I wished inpatient treatment to now not die of withdrawal, and insurance would handiest conceal outpatient. Overall, I was in two rehabs, two detoxes, and three hospitalizations. My of us paid for my first rehab, which is loopy on memoir of I’m now not from a effectively off household. MusiCares helped pay for a pair months of sober living after that, however it and not using a doubt used to be a finite helpful resource.

I mediate I had my SAG advantages for two of the bills, however the rest of them I unnoticed and hoped they would leave. I misplaced my advantages all but again on memoir of I wasn’t in a region to work for a three hundred and sixty five days and a half of — I attempted, however I was comely now not in any form to face the creativity, so I wasn’t if truth be told making money. My marriage ended and Michelle Lewis, my writing partner for over two decades, said she wasn’t going to work with me all but again till I was sober for two years. It comely so came about that the brand we were working on, Doc McStuffins, went help into manufacturing once I’d been spruce long enough, so as that worked out beautifully. I’m customary to stretching a greenback, and once I did non-public some somewhat correct money within the dumb ’90s, I squirreled it away. I’m now not effectively off, however I was in a region to non-public rush that the teenagers weren’t homeless and my daughter can even in discovering her epilepsy medication, which is extraordinarily costly. That’s why we’ve needed to return on COBRA three out of the closing 12 years — that you just may perchance’t ration epilepsy medication for a kid or deliver, “We can’t possess enough money it this month.”

“It wasn’t till I went to subsequent therapists that I was relish, Wait a second, that used to be fucked.”
Photo: Barry Brecheisen/Getty Pictures

My ride is that, whether you possess insurance or now not, the care is comely shit. It’s overworked docs who construct now not possess any time for you, health-care workers who are overwhelmed and damaged, and an undertone of nastiness where you don’t even feel gain within the ambiance. I’ve had cases happen where I’m relish, Modified into I comely sexually assaulted? In relish 2013, I fucked myself up on a video shoot and had odd bruising in my groin dwelling. I conception it used to be a hernia, and I went to this physician who used to be relish, “That’s now not a hernia. If it used to be a hernia, it would feel relish this,” and they shoved two fingers into my groin as intriguing as they may be able to even. There’s nothing relish realizing they’re comely treating me relish a fucking fragment of meat. You construct now not possess any recourse for it, you’re at their mercy, and you pay what they dispute you to fucking pay.

Gender transition used to be the predominant time I needed to consistently gaze health-care services and in discovering prescriptions stuffed. Even with medical health insurance, 90 p.c of the time I feel relish I’m comely pissing money away each month. Now not too long ago, I received a conception that at least covers therapy for $40 a session, however as some distance as hormone replacement, I in discovering fucking nothing; it’s all “optionally available.” In Chicago, there’s a fanciful put known as Howard Brown Health that provides comely transgender care with discounted charges, however without that, it’s about $250 for an estrogen prescription alone and thousands a three hundred and sixty five days for the full care.

In dispute to in discovering on HRT in Florida, I was required to construct six months of psychotherapy before I’m in a position to also poke to an endocrinologist. They comely wish to listen to you suppose about sporting your mother’s dress or one thing sexual before they’ll deliver, “Accredited.” Then the endocrinologist is peaceable relish, “Are you rush you if truth be told wish to construct this?” It wasn’t till I went to subsequent therapists that I was relish, Wait a second, that used to be fucked.

In 2018 or ’19, I had facial-feminization surgical operation in Spain. It used to be more cost effective, and they were the handiest docs who insisted on an in-person consultation. Attending to ride the care over there used to be relish night and day. But even supposing it used to be an even ride, there were complications. I’m peaceable unsafe what triggered it, however I couldn’t elevate my factual arm, my guitar-strumming arm, above my shoulder for a three hundred and sixty five days. I didn’t possess the choice of taking ruin day to fully get better. I’m a working-class musician, so I needed to in discovering help out on the toll road a pair months later.

If our procedure weren’t so damaged, I wouldn’t possess as many apprehensions about undergoing sexual-reassignment surgical operation. I’ve had mates who’ve had these gender-asserting surgeries, and there’s repeatedly some facet non-public or consequence they weren’t ready for. It’s this kind of predominant surgical operation that I comely don’t feel gain for those causes, and it doesn’t need to construct with anything else relish, Attain I need that? It’s a exact anguish.

In phrases of trans care, those communities are if truth be told at risk. My therapist now not too long ago said, “Top off at least six months of hormones with the way things are factual now.” Past luminous where dawdle performances are unlawful and they may be able to even merely come for me as a transgender artist, it takes somewhat a few foreplanning to non-public rush that you just don’t flee out of hormones on tour. There were cases where I’ve been anxious; I had a layover once in Dubai, flying with syringes and estrogen, and it’s relish, Am I going to in discovering in disaster with this?

Facing it all burns you out, and it’s a fully masses of headspace from the artistic facet. It’s cumulative detrimental energy that results to your unconscious and is derived out to your work. The silver lining is you in discovering some correct songs out of it. But it and not using a doubt taints your conception of humanity, on memoir of you poke to those of us for care, and they’re comely merciless. the full procedure is damaged, religion is damaged, government is fucking damaged — you’re to your delight in.

“It’s terror-inducing to snatch I shall be told I need one other biopsy or exploratory surgical operation, however I’m help on the toll road.”
Photo: Erika Goldring/FilmMagic

My dad died from most cancers, and all four of my grandparents and 7 of my eight enormous-grandparents had most cancers, so I knew I was going to in discovering it at some point soon; I comely didn’t mediate it’d be in my early 30s. I was on the toll road opening for the Killers doing a two-night stand in Reno. The principle night went enormous, and then the second day, I couldn’t end throwing up and had a complete lot of belly effort. I went thru with the brand, received if truth be told dizzy and disoriented after, then went to the scientific institution, where I stumbled on out my appendix had perforated. They didn’t possess an operating table elegant enough for me, so they weren’t in a region to take it out.

They did a CT scan and stumbled on one thing odd in my colon, however the image came out blurry on memoir of they didn’t possess a machine enormous enough for me. They set apart me on fluids and antibiotics for five days and despatched me dwelling to Dallas. That used to be the predominant time I realized that the scientific self-discipline isn’t accommodating to of us my size. After I wished a PET scan, there were handiest three machines within the country that will perchance match me; I needed to drive two hours each manner to Shreveport for it.

Weeks later, as I was stepping out the door to cruise to L.A. to construct my Jimmy Kimmel taping, my physician known as: I had colon most cancers. I told my fiancée and mother however somewhat powerful saved it a secret from all people else. I was locked in for the performance; I knew that somewhat a few things were about to interchange, so it felt relish, I better construct this factual, on memoir of it can even very effectively be the closing thing that I construct publicly for a whereas. Decrease than a month later, docs eradicated a third of my colon, 52 lymph nodes, two sections of small gut, and my appendix, on memoir of it all regarded cancerous. Which capability of my household history, a physician had told me to discover a colonoscopy once I was 30, however insurance wouldn’t conceal it and I didn’t possess the money. I’d wish to point out for early colon-most cancers screening here: I perchance can even possess stumbled on that mass when it used to be comely a polyp and never needed to accommodate all this at 33.

I had surgical operation in December 2023, then I needed to heal up before starting up chemo in February. I was on a cocktail of instruments that on the full gave me heavy-metal poisoning. It sucked, however I set apart all my energy, once I felt correct, into writing songs. After chemo, they did extra assessments that showed a ton of nodules in each my lungs. It had likely metastasized to stage IV most cancers. To substantiate it, they did lung surgical operation that took me out of payment for ten weeks. I sold my tour van and slice corners in all places I’m in a position to also, however I within the break needed to present in and construct a GoFundMe to preserve the lights on. I hated asking for a handout, however it and not using a doubt received to a few extent where there used to be if truth be told no masses of option. How powerful strengthen I received used to be overwhelming, and it came with a correct quantity of guilt. But extra than one of us told me that it felt correct for them so as to reduction, and that helped me in discovering over my pleasure.

Just a few weeks later, the physician known as and said, “It’s now not most cancers.” I was so excessive on effort pills that the news regarded too correct to be comely, so I known as him help to in discovering affirmation. It’s terror-inducing to snatch I shall be told I need one other biopsy or exploratory surgical operation, however I’m help on the toll road. Being on tour is an ass-whip ought to you don’t possess any health points, so it’s extra intriguing than before. But thanks to being on high of physical therapy, my breath work is better than it used to be before, so I’m fully ecstatic with where I’m at as a performer. I’m comely attempting to roll with the punches, construct what the docs dispute me to construct, and be as wholesome as I will also be.

“I’m peaceable in PT; I’m the full way down to 1 appointment every week now, on memoir of in some other case I’ll flee out of insurance-covered intervals.”
Photo: Scott Dudelson/Getty Pictures

In June of closing three hundred and sixty five days, I rush to in discovering one of those condominium bikes we possess in Philly. I was a few blocks from dwelling when a automobile swerved into the bike lane, which is unprotected, and I fell at excessive flee over the handlebars. The woman drove off. I received up and used to be slice in all places however conception I was magnificent. Then, once I attempted to gain the bike, my left arm couldn’t construct anything else. My bandmate Audrey took me to urgent care and they were relish, “It’s mandatory to mediate a few surgeon today.” It used to be a shattered lateral condyle of the left humerus, as effectively as some muscle sprains spherical the elbow — among the worst fractures they’d ever seen. But then they said it is going to be four months till I received the operation, so once I met with the orthopedic surgeons, I conception, Perchance my guitar credentials will help me in discovering in faster. I’m now not one to brand off or brag about my perceived accomplishments, however it and not using a doubt worked.

On the outset, they said it’d be three to four months after the surgical operation before I’m in a position to also gain a guitar. After I had the accident, my band used to be now not up to 2 weeks from a festival, so as that wanted to be canceled today. After the surgical operation, we were playing it by ear, on memoir of they told me I’d perchance be in if truth be told intensive effort for a really long time. I wasn’t allowed to construct any extra or less strenuous process for a pair months. Although I wasn’t playing guitar, I gained’t be up for singing, on memoir of that expends energy.

Two months after the accident, we performed a tour we had scheduled with Mary Timony, and my partner, Dylan Baldi of Cloud Nothings, stuffed in on guitar. I’m in a position to also construct barely enough on the guitar to coach him the songs, which received me help to playing earlier than they conception that which that you just may perchance mediate. I’m peaceable in PT; I’m the full way down to 1 appointment every week now, on memoir of in some other case I’ll flee out of insurance-covered intervals. The co-pay is $95 per session, the very finest the workers there has seen. I in discovering acupuncture and massages, which possess made a gigantic distinction, however those aren’t covered. It’s peaceable 20 hours every week of elbow drama.

My out-of-pocket max for surgical operation used to be imagined to be $700, however thanks to the way the bill used to be itemized — anesthesia, physician’s charges, “scientific institution products and services,” and so on. — I executed up paying $2,271.84 in installments after I negotiated discounts. I’d never executed that before, however now I know that the second you name, they’ll offer to take a bill down 10 p.c. But peaceable, it used to be spherical $45,000 in scientific charges closing three hundred and sixty five days.

I wasn’t artistic and had no earnings for a really long time. I’m help to doing some writing and recording now, however it and not using a doubt’s going manner slower than it customary to. The tendon effort is all long previous, however the grip energy on my fretting hand is corrupt, and masses of of the nerve sensation hasn’t come help. But in accordance to what the preliminary ruin regarded relish, they didn’t set apart a question to me to non-public any extra or less recovery. I feel relish that’s strictly on memoir of I’m in a region to take the ruin day to construct what I must construct, which most of us can’t. And that makes me furious.

“The toughest thing for me, as an artist on the toll road 150 days a three hundred and sixty five days, is being in a region to in discovering the medication stock I need for the time I’m going to be long previous.”
Photo: Mat Hayward/Getty Pictures

I received invited for my first brand in Original York, and I undergo in ideas strolling down the avenue on the Decrease East Aspect. My legs comely stopped working. I fell down on the floor, and of us were comely strolling by me. It used to be relish pins and needles. Then, slowly, the feeling started to come help help, and I comely walked on. I conception that used to be if truth be told unfamiliar, however I didn’t mediate, I if truth be told possess diabetes and I’m about to die. I had two weeks of spells relish that and misplaced about 20 pounds before I went help to Memphis and my job. I executed up within the emergency room, where they gave me insulin and said, “Your blood sugar is over 1,000 and a typical person’s is 80 to 110.” I was diagnosed with Form 1.5 diabetes, and that’s insulin-dependent, that way you’ll die at the same time as you happen to don’t take it.

I didn’t possess any insurance once I was first diagnosed. I was working three to 5 jobs on high of playing song and saving up for my first file, then I received a $30,000 bill for the emergency room. I known as the physician’s place of job and said, “I’m so unwell I’m in a position to’t even in discovering some distance from mattress. Now you wish to possess me to pay you, and I don’t possess it.” The girl I spoke to used to be very gracious. She asked what I’m in a position to also pay, I said $10 a month, and he or she let me construct that. I gave them that $10 for five or six years.

At closing, it wasn’t even a question that I’m in a position to are also living without insurance, which worth $1,000 a month pre-ACA. After my body shut down, I slowly received to where I’m in a position to also take a seat up, and then I’m in a position to also preserve my instrument in mattress, then I started playing it, and I did some gigs, getting about $300 to $400 on a Saturday night between my payment and the tip jar. Then extra gigs started to come help, I raised $15,000 from Kickstarter, and fortuitously I received to satisfy Dan Auerbach, who produced my album Pushin’ In opposition to a Stone. I signed with Harmony, which helped pay off that emergency-room debt, and within the break had a exact conception for taking care of myself.

The toughest thing for me, as an artist on the toll road 150 days a three hundred and sixty five days, is being in a region to in discovering the medication stock I need for the time I’m going to be long previous. I can not poke wherever on this world and not using a complete lot of vials of insulin stored in my suitcases and my instruments, on memoir of if I’m wherever at any time and I don’t possess it, then I’m gonna die. At any time once I am going away the dwelling, I if truth be told favor to possess backup pumps, sensors, needles, insulin, and sweet or juice — relish half of a suitcase stuffed with scientific supplies. It’s about $1,200 out of pocket per month, plus the physician co-pays, however I’m now not crawling onstage feeble and unwell anymore. I feel grateful that individuals with pre-existing stipulations can in discovering insurance now. A person can even merely peaceable never be in a nation as effectively off as ours and feel relish, Does my country favor me to die?

“There’s no shame in intercourse work, however for me, it’s a desperation thing.”
Photo: Viola Odette Harlow by utilizing YouTube

In my 20s, I started getting effort in my coronary heart, and I at closing stumbled on out I had lupus and masses of cascading autoimmune illness. At 31, after affected by an even extra or less effort that felt relish acid being poured into my chest, I received the comely news that I if truth be told possess Prinzmetal angina, a really uncommon coronary heart situation. Insurance protection companies on the full deliver, “Don’t in discovering it. We’re now not covering it.”

My coronary heart specialist if truth be told needs me so as to put collectively my needs, and he had a mastermind conception for a capability I’m in a position to also tour in a really explicit manner. I was in a region to drag it off for a few excursions, however then I felt stress now not to be annoying spherical my damaged-down brand. They’d marketed my illness if truth be told intriguing as allotment of the kit — relish, “Wow, a disabled pop well-known person!” — however when it came to dealing with the categorical disabled allotment, they were impatient. Once, I received elegant-dizzy after they wouldn’t let me wear an oxygen machine onstage in Denver on memoir of it wasn’t “a mediate about.” Flights aren’t correct for coronary heart illness, however one other time, we flew to Paris, and they made me elevate a bunch of instruments once I’m in a position to also merely peaceable’ve been resting in a wheelchair. They were footing the bill, so I did it. Two weeks later, I had a coronary heart attack, all on memoir of I was ignoring my body on memoir of I didn’t wish to lose my job.

Now, my medication charges are at least $1,500 a month, and my post-Paris ICU bill used to be $150,000. Most of my earnings now comes from OnlyFans; somewhat a few indie-song ladies are on there below counterfeit names. I abominate it, however I don’t if truth be told know how else to non-public money once I’m in mattress as a rule. There’s no shame in intercourse work, however for me, it’s a desperation thing. I could perchance perchance need fun doing it if it wasn’t paying for my $389 nitroglycerin bottle at CVS. I’d take the rest — working at a like a flash-food restaurant or grocery store — however I’d need to name out unwell the full time.

I did GoFundMes, however I’m out of that recreation. Because I don’t mediate about unwell the full time, of us conception it used to be all a scam. That’s when Sweet Relief came in, and they pay the docs straight, however generally the fund gained’t in discovering any donations for a month. Now I if truth be told possess fantasies of appealing to a farm and asserting correct-bye to the leisure industry eternally. There’s no put for individuals with chronic illnesses and disabilities there. It comely will get worse and worse.

“I don’t relish being Mr. Sad and Downhearted, however it and not using a doubt’s intriguing.”
Photo: Al Pereira/WireImage

I’d comely come dwelling from touring in Europe to celebrate the twentieth anniversary of my first album. I was feeling correct in my mid-50s; I ran five miles a few cases every week, ate effectively, didn’t smoke, no medication. I had ten months of touring scheduled, then one night, whereas out with some mates, I felt outrageous burning effort in my hips, legs, and decrease help. I attempted to counterfeit it thru our dinner however ended up on the restaurant floor, couldn’t in discovering up, and wanted an ambulance. After two masses of hospitals, a complete lot of MRIs, and somewhat a few dumb nights, they stumbled on I’d had a really uncommon spinal stroke.

I was within the scientific institution for three months, now not in a region to gain a guitar for weeks. Insurance protection covered some things, however at the same time as you’re discharged, you’re to your delight in. They stopped paying for PT and didn’t conceal the wheelchair that NYU Langone said I wished and had fitted me for. I was as an different despatched dwelling with a $200 wheelchair, which I peaceable utilize. I had nowhere to are living — my dwelling used to be a dawdle-up, so I needed to preserve in hotels with handicap bogs that were costly. I wished help getting spherical and into the lavatory, however they don’t conceal dwelling care or my scientific supplies.

When the docs said there used to be no hope for recovery, we regarded into different therapies. I executed up going to Buenos Aires for six months of stem-cell therapy, plus five days of PT every week. It worth $10,000 plus charges, however I came dwelling in a region to utilize my legs, straighten my body, and poke with a walker. It’s been tricky, however the final discover facet is that the song neighborhood — the artists, the fans, the organizations relish Sweet Relief — has been so generous. I didn’t wish to preserve out the cup, however when somebody’s in need, they rally.

I are trying to be overjoyed about the things that I if truth be told possess. I don’t relish being Mr. Sad and Downhearted, however it and not using a doubt’s intriguing. I did two dates in a foreign country to mediate about what it would be relish — handicap rooms were twice the worth, plus paying for the nurse, so it fed on so powerful of what would were my earnings. We’re peaceable combating with the insurance company over the wheelchair and hired a scientific point out to contest it. The monetary stuff weighs on me comely as powerful because the physical — the terror you’re repeatedly combating off to preserve rush and wholesome and therapeutic. It’s a conflict.

It’s been two years now — I’m in a region to in discovering up with braces and a walker, however I construct now not possess any feeling in my legs from my greater thighs down. I mediate in combating thru this and discovering programs to preserve working on my song. I’m for the time being increasing a one-man brand about my existence, one thing where I’m in a position to construct and never need to hasten. I’m doing the entirety I’m in a position to to defy the percentages to in discovering up there with my band and sigh and dance all but again. It’s the unknown, however I peaceable mediate I’m going to get better.