Could Die

Meet Jennifer, A Woman Who Could Die If An Anti-Obamacare Lawsuit Succeeds

by Ian Millhiser

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.

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.

No Choice

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.

Read more here:
http://thinkprogress.org/justice/2014/09/09/3563817/deadly-consequences-of-halbig/