When I speak to Jennifer Causor for the first time, she rings with enthusiasm as she describes her new exercise program. It’s a “boot camp” themed program, “which is something I never thought I’d be able to do,” Jenn tells me over the phone. “It is so hard, but it is so awesome!” she proclaims, before describing a time when she was so tired from a kettlebell workout that she actually started crying.
Jenn’s ability to lift kettlebells, or, for that matter, to drive a car or to walk to her own mailbox, is nothing short of miraculous compared to the life she faced just a little more than a year ago. For her entire life, Jenn has lived with cystic fibrosis, a genetic disorder that caused her lungs to fill with fluid and that still interferes with her digestive system. She takes medicine every time she eats to help her process food.
When Jenn first started exhibiting symptoms, they meant nothing more than “having a cough” and having “to take pills when I eat.” When she was in her 20s, however, the symptoms grew quite severe. She was constantly filling her body with expensive intravenous drugs. “I had to breathe lots of medicine through a nebulizer,” a process that “took hours a day.” Living with cystic fibrosis, Jenn says, was like having two jobs. “It was like, I worked full time. I worked 40 hours . . . but then, again, having CF was like a full-time job within itself.” In 2012, her health took an even worse turn when one of her lungs collapsed and she was hospitalized for a week. Not long after she was released, both of her lungs collapsed and her doctors struggled for two months to keep them inflated. She lived in the hospital that entire time.
In a five month span, however, two things changed that offered Jenn a new chance at life. The first was a double lung transplant. On August 29, 2013, Jenn received two new lungs that were free of cystic fibrosis. Not long thereafter, she drew her first breath as an adult from lungs that were not constantly filling up with choking mucus. Although Jenn will be on anti-rejection drugs for the rest of her life, she can now speak on the phone again. Her husband Eder can touch her face again or kiss her cheek again without triggering a fit of coughing. Jenn is not confined to a hospital anymore. She lifts kettlebells instead.
Five men in Washington could sentence Jenn to the same uncertainty she endured before the Affordable Care Act. They could potentially sentence her to die
The second change came on the first day of 2014 when the most important provisions of the Affordable Care Act took full effect. That meant that, for the first time in her life, Jenn knew that, no matter what happened, she would have health insurance. For Jenn, Obamacare means that insurers must cover her, despite her expensive preexisting condition. And it means that she is not facing a death sentence if she is unable to obtain health insurance through her own job or her husband’s.
Except for the fact that a group of lawyers are trying to take this certainty away from her. Last July, two Republican judges on the United States Court of Appeals for the District of Columbia Circuit voted to defund much of the Affordable Care Act, including provisions which ensure that Jenn’s insurance is affordable. Moreover, although the full DC Circuit recently withdrew this decision and announced that it would rehear the case before a much larger panel of 13 judges, the plaintiffs in this lawsuit have not exactly hidden their desire to get this case before the conservative Roberts Court where four justices already voted once to repeal Obamacare. If the justices ultimately take this case, which is known as Halbig v. Burwell, and if one more of them agrees that Obamacare should be defunded, that could trigger a death spiral that could collapse the law’s health insurance marketplace in much of the country.
Five men in Washington could sentence Jenn to the same uncertainty she endured before the Affordable Care Act. They could potentially sentence her to die.
Jenn built her adult life around her need to have health insurance that could pay for the treatments that sustain her life. As a child, her parents “banged it into my head that I had go to college because I had to have a job that has insurance. There was no way I could go without insurance.” After graduating from high school, Jenn took courses online, at a community college near the town in Arkansas where she grew up, and at Arkansas State University until she had enough credits to graduate with a bachelors degree.
While she was studying, her father paid $1,000 a month to keep her on the plan he received through his work. It was a lot of money. But, with each check that he wrote, he was potentially buying his daughter another month of life. Although a federal law allowed her to remain on this plan so long as her father paid these high premiums, it only allowed her to do so for a limited period of time. She finished school around the same time that her eligibility ran out, enabling her to find a job that would continue to provide her with insurance.
The Affordable Care Act’s opponents built their case against the law around a singular message — government and health care are like matter and anti-matter, and the two must not be allowed to mix. Even before Obamacare, however, most insured Americans were either insured through a federal program or were able to obtain insurance in the private market because of federal regulation. Close to 50 million Americans were insured through Medicare, and more than 66 million were insured through Medicaid — and that’s before the Affordable Care Act expanded this program. These two programs alone cover nearly a third of Americans overall, and they covered nearly 44 percent of U.S. residents who had insurance before Obamacare took full effect.
Outside of Medicare and Medicaid, millions owed their health insurance to a web of federal laws governing employer-provided health plans. The law that allowed Jenn to remain insured while she was in college is commonly known as COBRA, and it sometimes permitted young adults to remain on their parents’ health plans for several years after they reached adulthood — although it often required them to pay exorbitant premiums in order to do so. The same law permits people who lose or quit their job to remain on their former employer’s plan for a limited period of time, which is why Jenn was able to remain insured after her lungs deteriorated to the point that she was no longer able to work.
For millions of Americans living with preexisting conditions before Obamacare, however, a good job — or, at least, a job that was good enough to offer health benefits — was often the only way a person with a preexisting health condition could obtain insurance. In the individual market, the largely unregulated segment of the health insurance industry that offered plans to people who couldn’t get health care through a job or a government program, insurers denied coverage to people with conditions as severe as cancer or as trivial as hay fever. A Florida woman was given anti-AIDS medication after she woke up on a roadside with signs that she’d been drugged and raped. Although she never developed HIV, insurers refused to cover her because they feared that they might have to cover this condition. Her rape, in effect, became a preexisting condition.
Once someone took a job that offered health benefits, however, the picture became quite different. Though the federal laws governing employer-provided plans are complex, they typically prevent such a plan from refusing to cover a preexisting condition if the person with the condition continuously maintained health coverage before they became employed. What this legal regime meant for Jenn is that she could never have a break in her health coverage, because even a few months without insurance could saddle her with crippling expenses just to pay for her prescriptions. Before her transplant, Jenn paid $800 per month for her medications, and that was after her insurance company paid its share. Without insurance, these drugs were simply unaffordable.
The problem Jenn faces right now, or, at least, that she would face if it were not for Obamacare, is that she is not currently employed and her eligibility for her COBRA plan expires next month. When I spoke to her, she’d already enrolled in an Affordable Care Act plan that takes effect the day her COBRA plan runs out, but that plan may not exist any more if the courts decide to defund the law. That leaves her with few good options.
The Same Hospital
Though it may seem incongruous that Jenn is able to maintain a rigorous exercise regime but not to go back to work, part of the reason why is that exercise does not necessarily expose you to disease but going to an office every day can expose you to sick colleagues. This is a problem because Jenn’s immune system is severely compromised due to the drugs she is required to take after her transplant.
According to a paper published in the Proceedings of the American Thoracic Society, organisms ranging from sponges to humans “have evolved sophisticated mechanisms that permit recognition of self from non-self.” When the human body detects a foreign invader — and Jenn’s body perceives her two working lungs as foreign invaders — the immune system tries to destroy it. So Jenn must take powerful anti-rejection drugs that suppress her immune system and render her unusually susceptible to disease. For this reason, she’s cautious about going back to work because “so many people go to work sick,” and when someone is immunosuppressed, “any little thing” can lead to serious health complications.
If this were the only obstacle between her and the workplace, she could probably overcome it. According to Dr. Duane Davis, Professor of Surgery and Director of Transplantation at Duke University Medical Center, transplant patients are generally encouraged to “return to productive lives,” although they may want to avoid fields where they are especially likely to be exposed to viral illnesses. “We have counselled a patient who was working in a virology lab that this was not going to be a low risk endeavor,” Dr. Davis explained in an email to ThinkProgress, adding that “being a pre-K teacher or someone who would be exposed to many children with viral illnesses,” would also be a “higher risk area of employment.” So it is possible that Jenn may someday find another job, although she could have fewer options than she did before her transplant.
For now, however, Jenn faces several other obstacles preventing her from returning to work. Jenn lives three-and-a-half hours from Vanderbilt University Medical Center, the hospital where her transplant took place, which she needs to travel to most weeks to receive follow-up treatment. She also contracted a viral infection from her lung donor than can lay her out for an entire month when it flares up. So keeping a regular work schedule would be very difficult, if not impossible, for Jenn. “Even though I’m not quote-unquote ‘sick’ now,” Jenn tells me. “It’s still a big job just to take care of myself.”
Without Obamacare, her best option to remain insured once her COBRA plan runs out would probably be to shift onto her husband Eder’s health plan. Eder works in the web marketing department for a hospital system near their home, so “you would think their insurance would be awesome,” Jenn quips to me over the phone. In reality, however, Eder’s plan does not cover most of the treatment she receives at Vanderbilt. Though it’s possible that Jenn might be able to receive some of her care in a different hospital system, she worries about receiving aftercare for her transplant at a different hospital than the one that performed it.
When I ask Dr. Davis about this concern, he says that a patient can be transferred from one transplant center to another “without much risk as long as the appropriate handoff is made,” though he adds that “[t]his frequently is a source of errors.” Many of these errors arise from the fact that the patient’s new doctors may not know “the full historical details of a recipient’s course including intolerance to certain medications, previous rejection history [and] infections.”
Jenn, for example, takes one drug that has serious neurological side effects. Her current doctors test her blood weekly to make sure that she isn’t receiving too much of this drug, but finding the right balance between ensuring that she does not reject her new lungs and warding off the drug’s side-effects has been a difficult process of trial-and-error. “I can’t drink out of glasses anymore,” Jenn says, “I have to drink out of plastic cups because I’ve thrown so many glasses” due to the drug’s tendency to cause her to involuntarily hurl objects. At one point, the drug even made it difficult for her to think or to talk. “I couldn’t get my words,” Jenn tells me. “I knew what I wanted to say, but I just couldn’t get my words out or I couldn’t think of what something was called.”
If Jenn were to switch to a different hospital, her new doctors would not have the benefit of having spent the last year working with her to ensure that she was taking the right amount of medication. She could wind up having to relive some of the painful side effects her current doctors now know enough to avoid.
The Price of Being Uninsured
Assuming that Jenn can continue her care under Eder’s plan, relying on her spouse for coverage puts both of them in the same precarious position the families of countless Americans with preexisting conditions faced before the Affordable Care Act. If Eder were laid off, or if he decided to leave his job in order to start a business, Jenn’s treatment would become completely unaffordable the minute they lost access to health insurance. She would almost certainly die.
The cost of Jenn’s treatment without insurance is simply staggering. Her transplant alone cost $279,379, according to a statement of benefits she received from her insurance company. That’s more money than all but the top 3 percent of American households earn in a year. Jenn is currently taking three anti-rejection drugs, one of which has a sticker price of nearly $2,400 per month. And that doesn’t include the cost of her other anti-rejection drugs, her anti-fungal drugs, or the drugs she takes to mitigate the infection she caught from her lung donor.
The cytomegalovirus (CMV) is a very common virus that infects most individuals without them even being aware of it. In immunocompromised patients such as Jenn, however, the virus can cause flu like symptoms that often last for a month or more. When her CMV flares up, Jenn needs to take medication by IV that costs $900 per week for three to five weeks. So that’s between $2,700 and $4,500 every time there’s a flare up.
Indeed, even the most banal medical condition can force Jenn into expensive treatment. After she was diagnosed with acid reflux disease last December, her doctors grew concerned that her stomach acids might damage her new lungs, and that this could, in turn, cause her body to reject them. So a surgeon “actually had to go in and tie part of my stomach around my esophagus so that way the acid wouldn’t, like, splash up on my lungs.” This surgery, Jenn says, “was actually harder to recover from than my lung transplant.” It also carried a sticker price between $30,000 and $40,000 without insurance.
One reason why these prices are so high is that they typically reflect a health provider or drug company’s opening bid in a bargaining process they conduct with insurers. When a large health insurer is confronted with a six figure bill for a lung transplant, or even a three figure bill for a patient’s anti-fungal drugs, they are typically able to bargain these prices down because they speak on behalf of thousands, tens of thousands, or even hundreds of thousands of patients. If a particular hospital refuses to bargain, an insurance company can threaten to cut that hospital out of their network, so the hospital will come to the negotiating table out of fear that it will lose a large chunk of its patients.
Although uninsured patients are sometimes able to bargain with their doctors as well, Jennifer Causor does not have anywhere near the kind of bargaining power that a major insurer does. Neither does any other individual patient. So uninsured patents can get stuck paying the full sticker price for an expensive treatment or drug, even as an insured patient receiving the exact same care pays a fraction of the same cost through their insurance company.
Life and Death Spirals
When I ask Jenn what would happen if she lost her health insurance, she can barely even contemplate the possibility. “Oh my gosh, I don’t know what I would do,” she tells me in her thick Southern accent. “My anti-rejection meds, I have to be on them. Like, I have to. If I went off of them, I would go into rejection and I would eventually die.”
Yet the goal of the Halbig lawsuit, according to one of its leading proponents, is to dismantle the very legal regime which guarantees that Jenn will be insured for the rest of her life. Oklahoma Attorney General Scott Pruitt (R) filed a brief in the Halbig case calling upon the court to defund Obamacare, and he personally sued the Obama Administration in a companion case raising the same arguments in a different court. According to Pruitt, if these lawsuits succeed, “the structure of the [Affordable Care Act] will crumble.”
If the Supreme Court agrees with Pruitt and defunds Obamacare, it is likely that Pruitt will be proved correct. To understand why, one must first understand how health insurance works from an insurance company’s perspective.
Health insurance works by pooling many people’s money together — this pool includes all of the insurer’s premium-paying customers. If one of these customers becomes ill, they can then draw money out of this pool to help them pay for their medical expenses. Thus, in any given year, a particularly sick customers might draw a lot of money out of the pool, while healthy insurance customers may simply pay their premiums every month without ever drawing any money out of the pool at all. Because no one can know in advance how healthy or sick they will be in a particular year, however, health insurance gives all of its customers the security of knowing that, when they inevitably do become sick, the insurance pool will be there to help them cover their medical expenses.
Now imagine that someone joins this insurance pool who already has an expensive medical condition. They could easily draw all the money out of a pool that they have not been paying premiums into all along, leaving nothing else left for the plan’s other customers. So, in order to meet its obligations to its existing customers, the insurance company would have to raise its premiums in order to bring more money into the pool.
Once that happens, however, many of the plan’s healthy customers are likely to decide that they cannot afford the higher premiums, or maybe they’ll just decide that they would rather live with the risk of becoming sick than pay for expensive insurance coverage. Yet, as healthy customers exit the plan, that starves the insurance pool of even more money, forcing the insurer to jack up premiums even higher. Which causes even more healthy customers to leave the plan. Which causes premiums to go up even more. Which causes more healthy customers to leave the plan.
“My anti-rejection meds, I have to be on them. Like, I have to. If I went off of them, I would go into rejection and I would eventually die.”
This process, where sick people race to obtain insurance that they desperately need while healthy people drop their insurance if premiums become too high is known as “adverse selection.” Something known as an “adverse selection death spiral” occurs when higher premiums caused by healthy people dropping out of the market lead to even more people dropping out, which leads to higher premiums, which leads to more people dropping out — and so on and so forth until the entire market collapses.
In the past, health insurers warded off adverse selection by simply refusing to cover people like Jenn who have expensive preexisting conditions. The Affordable Care Act, however, forbids this practice. All plans sold in the Obamacare exchanges must accept new customers regardless of whether they are sick or well.
Obamacare also includes two mechanisms that prevent adverse selection, however. The first is the so-called individual mandate, which requires most Americans to either obtain health insurance or pay higher income taxes. Thus, people who don’t carry insurance will face a financial penalty if they do so, and this penalty will encourage them to buy insurance even when they are healthy.
The second mechanism attacking adverse selection are the subsidies Obamacare offers most health exchange consumers to help them pay for their insurance. The subsidies allow healthy consumers who otherwise couldn’t afford insurance to purchase it anyway. And they also provide an incentive for people to remain insured for the simple reason that it is easier to do so if part of the cost of an insurance plan is already paid for.
The Halbig lawsuit, however, seeks to destroy one of these mechanisms and undermine the other, inviting an adverse selection death spiral in much of the country. Indeed, if this lawsuit succeeds, it could rip away Jenn’s ability to obtain an Obamacare health plan at any price.
A Law That Does Nothing
The premise of the Halbig plaintiffs’ claim is that a poorly drafted provision of the law must be read out of context to deny subsidies to people in states like Tennessee that did not elect to set up their own health insurance exchange. The Affordable Care Act gives states a choice. They can either set up their own exchange, where their residents may buy health insurance and receive subsidies to help them pay for it if they qualify, or they can allow the federal government to set up the exchange for them. The Halbig plaintiffs, however, and the two judges who voted to defund Obamacare, rely on a drafting error in the law that appears to limit subsidies to people who obtain insurance through “an Exchange established by the State.” According to the two judges’ opinion, “a federal Exchange is not an ‘Exchange established by the State,’” and that’s the end of it.
Since a decision against Obamacare in Halbig would divide the nation into two classes of states — those that will still offer subsidies through their exchanges and those that will not — I ask Jenn whether it would be possible for her to leave Tennessee and move to a state with a fully functioning exchange if the court’s decision goes against her. She tells me that she could not.
For one thing, Jenn wants to remain within driving distance of Vanderbilt, where she still receives aftercare for her transplant. For another, there’s no guarantee that Eder will be able to find a job in another state. The two of them could lift up their roots, head off to a state with a state-run exchange, and then promptly discover that they have no way to buy groceries or to pay their rent.
Jenn also has an intensely personal reason why she does not want to leave her home — “My dad has lung cancer and he’s not doing well at all. So I can’t move very far” from him. If she left Tennessee to overcome an adverse decision in Halbig, she could lose her final months or years with the man who raised her, and who made it possible for her to attend college despite her expensive medical condition.
Under well-established legal rules, however, Jenn should not have to even consider leaving Tennessee. If the Halbig plaintiffs are successful, an estimated 6.5 million Americans would lose their ability to afford insurance. Yet, as ThinkProgress previously explained, their lawsuit rests on a misreading of Obamacare that ignores numerous other provisions of the law that indicate Congress did not intend to deny subsidies to people in states with federally-run exchanges. The flaw in the case against the insurance subsidies is that it places too much weight on just one part of the law. As the Supreme Court explained in 2007, “a reviewing court should not confine itself to examining a particular statutory provision in isolation” as the “meaning — or ambiguity — of certain words or phrases may only become evident when placed in context.”
There is another, even bigger flaw in the Halbig plaintiffs’ argument as well. If their reading of Obamacare is to be believed, that would mean that Congress designed the law in a way that would, in Attorney General Pruitt’s words, cause the structure of the health exchanges to crumble in states that elected not to set up their own exchange. If the courts cut off subsides to millions of Americans, that will lead to massive new out-of-pocket costs for those consumers. A family of four in Dallas that earns $50,000 a year will see their premiums nearly triple without the subsidies. If the same family moved to Memphis, closer to where Jenn lives, their premiums would nearly double. Such drastic premium spikes would cause many healthy consumers to leave the insurance market, potentially triggering a death spiral. Indeed, according to a brief filed by several dozen economists in the Halbig case, the resulting premium spikes would render insurance “unaffordable for more than 99 percent of the families and individuals eligible for subsidies under the current IRS rule.”
The Halbig plaintiffs . . . expect the courts to believe that Obamacare is supposed to create barren health exchanges where little or no health insurers offer exorbitantly priced insurance that hardly anyone can afford.
If anything, however, this brief may be too optimistic about the consequences of striking down the subsidies. Should the overwhelming majority of health insurance customers be priced out of the market by rising premiums, there is still one class of health consumers who would pay nearly any price to obtain insurance — people like Jenn who must have insurance in order to survive. Few, if any, insurance companies would be willing to offer insurance to a market that is absolutely saturated with the highest-risk, most expensive-to-insure patients in our health care system. So the health exchanges could simply dry up for want of an insurance provider willing to sell any product whatsoever.
This is not idle speculation. In 1994, Kentucky passed a law which required insurers to cover people with preexisting conditions, but which did not have adequate safeguards to prevent adverse selection. The result was a catastrophe. “The departure of nearly all insurers from Kentucky’s individual market is probably the most widely known aspect of its reforms,” according to a paper published in the Journal of Health Politics, Policy and Law. Indeed, by late 1996, only two insurers were still offering new policies in Kentucky’s individual market.
Washington state faced even worse consequences after it enacted a similar law in 1993. By 2000, there were entire counties in Washington that had no private individual insurance coverage available whatsoever.
The Halbig plaintiffs, in other words, expect the courts to believe that Obamacare is supposed to create barren health exchanges where little or no health insurers offer exorbitantly priced insurance that hardly anyone can afford. That’s certainly not what people on Capitol Hill thought the law would do while it was being considered, and it’s not what the Affordable Care Act itself says it is supposed to do. The Obamacare statute says that it will achieve “near-universal coverage by building upon and strengthening the private employer-based health insurance system.” That statement is impossible to square with the stillborn exchanges envisioned by the Halbig lawsuit.
The Machinery Of Death
Let’s not beat around the bush. If this lawsuit succeeds, thousands of Americans will die needless deaths. In just one year, before Obamacare was enacted, a paper by six Harvard physicians found that nearly 45,000 American adults died because they did not have health insurance. That’s more than one death every 12 minutes.
In most cases, however, it is difficult to identify with any degree of certainty which Americans’ lives are jeopardized by Halbig. Insurance, by its very nature, is a hedge against uncertain risks. One person may go without insurance for a year, yet remain healthy the entire time. Another may be diagnosed with cancer halfway through the year. A third may make it until the 364th day, only to be struck by a car. Historically, insurance companies have employed legions of actuaries, underwriters and statisticians to help them predict which customers are likely to need considerable medical care and which ones are likely to remain healthy, but these predictions can never be 100 percent accurate. Humankind is not graced with omniscience. We can never know for sure who will live and who will die.
Jennifer Causor, however, is the exception to this rule. If Jenn cannot pay for her drugs, Jenn will die. And she is far from alone. According to the U.S. Department of Health and Human Services, “an average of 79 people receive organ transplants” every single day. That’s 28,953 organ recipients in 2013 alone. Moreover, although Dr. Davis says that there are “very rare” cases where a transplant patient’s immune system comes to tolerate their new organ, the overwhelming majority of these patients must remain on anti-rejection drugs their entire lives. Tens of thousands of men, women and children are fighting a war with their own immune system, and their only weapon is drugs that may be far too expensive for them to afford without insurance.
The world the Halbig plaintiffs would take us back to. The world Obamacare’s opponents seek to recreate, will also punish many more people that those unfortunate organ recipients who lose their insurance. It will take us back to a time when many Americans simply watched their bodies fall into ruin because they were unable to afford care.*
In the world without Obamacare, doctors would base treatment decisions for their uninsured patients on which drug company had recently provided them with free samples of their product.
Before Obamacare, George, a teenaged diabetic in Buffalo, had a factory job that did not offer insurance and that paid too little for him to afford the insulin, syringes and testing materials he needed to manage his condition. Unable to control his blood sugar levels, he went blind at age 20. One year later he died of multiple organ failure.
George’s sister Tina worked a waitressing job that also left her uninsured. At 24 she had a baby, who died five months later due to complications from gestational diabetes. A year later, Tina had a fatal heart attack.
If George and Tina had been insured, their fate would have almost certainly been different. “I had to face their mother at the funerals knowing if they had gotten good care for diabetes, we could have prevented all their end organ disease,” their doctor later explained to a reporter. “George would not have gone blind. The baby would have lived. Neither would have had heart or kidney problems.”
In Kansas City, Dr. Joseph Manley, a well-regarded gynecologist and Vietnam veteran, started having involuntary twitches. They eventually became so bad that he lost his medical practice — and with it his house, his car and his health insurance. For 11 years, he could not afford the $200 blood test that would have diagnosed his condition, Huntington’s disease. Often, he skipped meals in order to pay for medication. Dr. Manley’s story ended less tragically than George’s or Tina’s — he eventually found a clinic willing to diagnose his condition and provide him with care — but his life fell into ruin for more than a decade before that happened.
In rural Idaho, a 28 year-old mother developed a rare bacterial infection in her heart. Because her convenience store job did not provide her with insurance, she delayed care long enough that a mass formed in her heart, entered an artery and traveled to her brain, killing her. In a particularly cruel irony, the store promoted her to assistant manager shortly before her death — a promotion that came with health insurance. She left behind two small children.
Beth Gabree lost her insurance after her husband crushed his leg in a motorcycle accident, causing him to lose his job. A diabetic with a heart condition, Gabree stopped seeing her specialist, stopped taking one of her insulin drugs, and started rationing her heart medication to save money for her husband’s care. Before she found care at a free clinic, Gabree’s health deteriorated until she was unable to get out of bed.
In Jamestown, New York, an unemployed carpenter arrived at the hospital with bloody urine and sky-high blood sugar due to his untreated diabetes. When the hospital diagnosed him with cancer, he refused surgery because he had no way to pay for it — though he changed his mind six months later after the cancer grew worse. In the final months of his life, he became unable to work after he accidentally cut off his own thumb. He faced regular calls from a collection agency seeking payment for the cancer surgery. His toes had to be amputated due to his unchecked diabetes. His vision grew worse and one of his kidneys failed. After he developed cancer in his bladder, he lost that organ as well. Though he eventually qualified for Medicaid, that was after his family discovered him lying on the floor from a stroke brought on by his diabetes. He died in a nursing home, sharing a room with four other men.
A 64 year-old woman in Idaho developed a prolapsed uterus, a weakening of the pelvic muscles that held her womb in place. Although her uterus was literally hanging outside her vagina, the woman delayed surgery for a year so that this procedure would be covered by Medicare.
A young boy developed a tooth infection that spread to his heart, causing permanent damage, because his mother did not make enough money as a janitor to pay for his care.
A Chicago electrician blinded by his diabetes could not pay for his medications, so he went back to work despite the fact that he could not see the electric wires he worked with — he would feel his way along them to figure out what he was doing.
In the world without Obamacare, doctors would base treatment decisions for their uninsured patients on which drug company had recently provided them with free samples of their product. “You change medication every time a patient comes in and switch them to whatever free samples you happen to have that day,” according to a physician in an inner-city health clinic. Another doctor relied on free samples to treat a schizophrenic woman with thoughts of suicide. The woman’s husband was on 10 different medications, and would beg for samples of each one.
This is what health care looked like in the United States of America, the wealthiest nation the world has ever known. And it is what it will look like again in much of the country if the courts side with the plaintiffs in Halbig. Hard-working Americans will die because their jobs do not provide them with health benefits. Mothers will pray helplessly over sick children who are unable to receive essential care. Senior citizens will count the days until they qualify for Medicare and will finally receive treatment a long-neglected condition. Rape survivors will be treated like pariahs by the insurance industry.
On January 1, 2014, Jennifer Causor woke for the first time knowing that, no matter what direction her health turned, she would at least live without fear that she would not be able to afford treatment. She shared that certainty with millions of Americans who once feared that each trip to the doctor would bring a choice between death and bankruptcy.
Eight days before next Christmas, a lawyer will walk into a courtroom, approach a podium, and stand before 13 judges of the United States Court of Appeals for the District of Columbia Circuit. He will then open his mouth, and in a calm, lawyerly manner, ask those judges to take from Jenn the certainty Obamacare has given her.
*The following list is based on research conducted by the author in writing his forthcoming book, Injustices: The Supreme Court’s Nearly Unbroken History of Comforting the Comfortable and Afflicting the Afflicted. Many of these cases are discussed in Howard Bell, Case Study: The Uninsured, True Stories of Unnecessary Sickness, Death and Humiliation, 49 THE NEW PHYSICIAN (Sep. 2000).
Adam Peck contributed graphic design to this article.