Jackie Zimmerman住在密歇根州利维尼亚。从她的家到俄亥俄州的克利夫兰开车需要几个小时的时间 - 这次旅行，为医生的约会和手术做出了无数次。
“[It] was probably at least a $200 trip every time I went there, between food, and the gas, and the time, and all the things,” she said.
这些旅行只是一部分费用杰基必须支付以管理她的溃疡性结肠炎（UC），这是她多年来一直住的慢性病。
UC是一种炎症肠道疾病（IBD），导致炎症和溃疡在大肠（结肠）的内衬上发生。它会导致疲劳，腹痛，直肠出血等症状。它也可能导致各种并发症，其中一些是危及生命的。
为了治疗条件，杰基和她的家人在保险费，经费支付了数千美元的资金。他们还支付了在口袋里支付了免费旅行，反击（OTC）药物和其他护理费用。
“If we’re talking what insurance has paid, we’re at least in like the million-dollar range,” Jackie said.
“我可能是100,000美元的范围。可能更多，因为我不是在考虑每次访问的所有扣除。“
在用胃肠道（GI）症状约十年后，Jackie被诊断出患有UC。
“在我看到医生之前，我诚实地经历了大概的溃疡性结肠炎症状，”她说，“那时，我在高中，它令人尴尬。”
在2009年春天，她在凳子里看到了血，知道是时候去看医生了。
她去了当地的GI专家。他建议Jackie改变她的饮食并规定了一些膳食补充剂。
当这种方法没有工作时，他进行了一种灵活的Sigmodicopy - 一种用于检查直肠和下冒号的过程。他发现了UC的讲述迹象。
“By then, I was in a full-blown flare,” Jackie recalled.
“It was incredibly painful. It was a really, really terrible experience. And I remember, I was laying on the table, the scope was over, and he tapped me on my shoulder, and he said, ‘Don’t worry, it’s just ulcerative colitis.’”
但随着这种经历，就像那种经历一样，没有什么可以为未来几年面临的挑战准备杰基。
At the time she was diagnosed, Jackie had a full-time job. She didn’t have to miss much work at first. But before long, her symptoms intensified, and she needed to take more time off to manage her UC.
“As things ramped up, and it did very quickly, I was in the hospital a lot. I was in the ER probably every week for months. I was doing longer stays in the hospital,” she continued, “I was missing a lot of work, and they were definitely not paying me for that time off.”
在她的诊断后，Jackie的GI医生规定了她的梅萨明胺（Asacol），口服药物，有助于减少她结肠中的炎症。
但在开始药物后，她在心脏周围开发了一种液体的积聚 - 梅萨明胺的罕见副作用。她不得不停止使用药物，接受心脏手术，并在重症监护室（ICU）中度过一周。
这是众多昂贵程序中的第一个，延伸医院留下来，她的病情会产生。
“At that time, the bills were just sort of rolling in. I would open them and just go like, ‘Oh, this is really long and scary,’ and then be like, ‘What’s the minimum, what is my bare minimum, of payment?’”
Jackie enrolled in a health insurance plan that would help cover the costs of her care. When it became too difficult to afford her monthly premiums of $600, her parents would step in to help.
杰基还有多发性硬化症（MS），一种自身免疫性疾病，限制了一些她可以采取的药物。
Because of those restrictions, her doctor couldn’t prescribe biologic drugs such as infliximab (Remicade), which are often used to treat UC if mesalamine is off the table.
She was prescribed budesonide (Uceris, Entocort EC) and methotrexate (Trexall, Rasuvo). Neither one of those medications worked. It seemed like surgery might be her best option.
“在那一点上，我正在继续下降健康，”她补充说，“并没有迅速工作，我开始谈到看到外科医生。”
那是杰基在俄亥俄州克利夫兰诊所的旅行开始。她必须跨国线来获得她需要的照顾。
在克利夫兰诊所，杰基会接受手术，去除她的结肠和直肠，并创造一个称为“J-POUCH”的水库。这将让她储存粪便并将其传递。
该过程包括在九个月内的三项运营中组成。但由于不可预见的并发症，它花了四次运营，一年多的时间才能完成。她于2010年3月和她在2011年6月的最后一个进行了第一次行动。
Several days before each operation, Jackie was admitted to the hospital for pre-operative testing. She also stayed for a few days after each procedure for follow-up testing and care.
在每个住院住宿期间，她的父母入住了附近的酒店，以便他们可以通过这个过程帮助她。“我们正在谈到口袋里的数千美元，只是在那里，”杰德说。
Each operation cost $50,000 or more, much of which was billed to her insurance company.
她的保险提供商将她的年度免赔额达到7,000美元，但在2010年下半年，该公司缺乏业务。她不得不找到一个不同的提供者并获得一个新的计划。
“单独一年，我在口袋里支付了17,000美元，因为我的保险公司掉了我，我必须得到一个新的。我已经支付了我的扣除和超出了最大的最大值，所以我必须在年中开始。“
2010年6月，杰基失去了工作。
She had missed too much work, due to illness and medical appointments.
“They would call me after surgery and say, ‘Hey, when are you coming back?’ And there’s no way really to explain to people that you don’t know,” she said.
“I wasn’t there enough. They were gracious about it, but they fired me,” she told Healthline.
Jackie received $300 per week in unemployment benefits, which was too much money for her to qualify for state aid — but not enough to cover her living expenses and costs of medical care.
“我的每月收入的一半将是我的保险金，”她说。
“I was definitely asking for help from my family, and I was really fortunate that they could provide it, but it was a pretty terrible feeling to be an adult and still have to ask your parents to help you pay your bills.”
在她第四次手术后，杰基在克利夫兰诊所定期约会，以监测她的康复。当她开发了她的J-POUCH的炎症时，她所需要的手术常见并发症，她需要更多地前往克利夫兰进行更多的随访护理。
手术对杰基的生活质量产生了很大差异。随着时间的推移，她开始感觉更好，最终恢复工作。
In spring 2013, she got a job at one of the “Big Three” automobile manufacturers in Michigan. This allowed her to ditch the expensive insurance plan she’d purchased and enroll in an employer-sponsored plan instead.
“我实际上是我的保险，我的雇主的保险是第一次，因为我觉得我足够稳定，可以举行工作，并且我相信我会在那里有一段时间，”她回忆道。
Her boss understood her health needs and encouraged her to take time off when she needed. She stayed at that job for about two years.
When she left that job, she bought insurance through the state insurance exchange that had been established under the Affordable Care Act (“Obamacare”).
2015年，她在非营利组织开始了另一份工作。她为另一个雇主赞助计划交换了她的ACA计划。这一点效果很好，但她知道这不是一个长期的解决方案。
“I felt like I stayed at that job longer than I wanted to for things like insurance,” she said.
她早些时候早些时候复发了MS复发，需要保险，以涵盖管理这两个条件的成本。
但在目前的政治气候,ACA的感受too unstable for Jackie to buy another insurance plan through the state exchange. That left her dependent on her employer-sponsored plan.
She had to continue working a job that was causing her a lot of stress — something that can make the symptoms of both MS and UC worse.
Jackie and her boyfriend got married in the fall of 2018. As his spouse, Jackie could enroll in his employer-sponsored insurance plan.
“I’m very fortunate that I was able to get on my husband’s insurance, that we decided to get married right at the right time,” she said.
该计划为她提供了她需要管理多个慢性健康状况的覆盖范围，同时担任自雇数字营销顾问，作家和病人倡导者。
虽然她的GI症状目前正在被控制，但她知道可以随时改变。UC的人们可以经历长期的缓解，这些缓解可能是症状的“耀斑”。Jackie在预期潜在的复发时挽救了一些她获得的钱。
“当你生病时，你总是希望有一块钱，因为再次，即使你的保险确实涵盖了一切，它可能是惊人的，你可能无法正常工作。所以没有钱进来，你仍然有普通账单，并且没有患者帮助'本月我需要杂货'。
“The money out is just endless, and the money in stops really quickly when you can’t go to work,” she added, “so it’s a really expensive place to be.”