Reinventing American Health Care: How the Affordable Care Act Will Improve Our Terribly Complex

Book Preface

Erin is unlucky.
Truly American, Erin says that despite her hardships, “she is the luck-iest [woman] on the face of the earth”; that she “might have been given a bad break, but she has an awful lot to live for.”
Erin, who comes from a large, East coast Irish family, arrived in As-pen, Colorado, one winter to visit her brother, who was taking some time off between college and graduate school. She fell in love with the place and remained for the next 23 years. She also fell in love with Justin, an accomplished mountaineer whom she married in 1999.
Justin and Erin made a good life together. He worked each winter as a ski patroller on Aspen Mountain. She started a marketing company and was self-employed. In 2000 Erin gave birth to their irst daughter. Three years later they had their second.
Erin and Justin had the usual struggles of a young couple raising 2 children—inding afordable housing; expanding the hours in the day to accommodate the children, friends, work, themselves; keeping in touch with family out east.
But they also felt blessed. They lived healthy, active lives amid the beautiful scenery of Aspen. They hiked and biked and skied together as a family. And they formed close friendships.
They rarely needed to worry about their health or engage the health care system. Everyone ate a healthy diet. They were physically active. Neither Erin nor Justin smoked. Neither had any chronic condition nor took medications regularly. The girls did not have allergies, asthma, or any other childhood health problems. Besides 2 C-sections for the girls, no one had been admitted to the hospital.

Then tragedy struck. A few days before Christmas in 2008, Erin and Justin had an amazing morning skiing together. Two feet of fresh pow-der had fallen the previous night. Skiing conditions could not have been better. After lunch Erin left to meet their children, and Justin went back out to ski, alone this time, heading for his favorite, almost secret spot on the backside of Aspen Mountain. It was an area he had skied hundreds of times previously. Despite a promise to be home in a couple of hours, Justin never returned. A nighttime search of the mountain found his fro-zen body, buried in a freak avalanche 100 yards wide and 3 feet deep. The coroner’s report concluded that Justin had died almost instantly of blunt force trauma, a result of hitting a tree and being buried under the snow.
With the support of her parents and her Aspen friends, Erin carried on as a single mother of 2 young daughters. Over the next few years she recovered from Justin’s death. She began living her life again. Her daughters were recovering too. Her marketing business was thriving. They were still a healthy family.
In 2013 tragedy struck again. In March Erin and the girls went to Mex-ico with friends for a spring vacation. A few of the people on the trip got Montezuma’s revenge that lasted for a day or 2. Erin did not expe-rience any problems. But after being home 2 weeks she began to have severe abdominal cramping, followed by bloody diarrhea. Because of the blood, Erin went to her family physician. Once she heard Erin had been in Mexico, the physician thought it might be a bacterial infection. She ordered some stool cultures. Erin tested positive for a Campylobacter intestinal infection. She was treated with some antibiotics.
The cramps subsided and the diarrhea resolved. After she inished the treatment Erin did not feel great, but she seemed to be recovering. About 2 weeks later, however, the cramps returned. Erin’s physician thought the medicine may not have gotten all the infection or that she may have developed a secondary infection. So they tried a combination of 2 addi-tional antibiotics that would kill “90% of anything that was there.”
It didn’t work. Instead, Erin was getting worse. And then she felt a mass-like something in the lower part of her abdomen.
It was clear to Erin that something was wrong. On May 9 she went to the emergency room of the small Aspen Valley Hospital. The health care team was still focused on the possibility of an infection. They ordered a CT scan. While Erin was waiting for the CT results a nurse asked her whether there was anything she needed. Not having had anything to eat or drink all day, Erin asked for some water. After Erin had taken just 2 sips of the water, the nurse rushed back into the room and took the water away. “The doctor is coming to see you,” she said.
Clearly something was wrong, seriously wrong. The ER physician said that Erin had a large section of “telescoping colon.” Technically that is an intussusception in which one part of the colon swallows or over-rides the other. Though regularly seen in younger children, this is very rare in adults. In the report the radiologist reading the CT wondered whether some fat bulge might be causing this telescoping. The ER phy-sician said the intussusception could cause serious problems, strangu-lation of the colon and perforation, and that it had to be dealt with by emergency surgery in the next 20 minutes.
Trying to keep her head, Erin asked whether the surgery could be done laproscopically. Could the doctors wait to get a second opinion? Maybe send her to Denver for such a serious operation? But no other surgeon was available for a second opinion; indeed, the surgeon on call was not an Aspen hospital physician but rather a visiting surgeon from Maryland. The surgeon thought it was an emergency because they could not see what was wrong and a large stretch of colon was involved. He told Erin he felt it was imperative that he get in and operate immediately to investigate what was causing this telescoping and deal with the prob-lem, hopefully before any serious damage was done to the colon tissue.
Erin, feeling that the situation was quite out of her control, had to “pretty much release myself to the medical team and trust that they were going to take good care of me.” She went into surgery.
The next thing she remembers is groggily waking up in the recov-ery room. “I was later told that the surgeon had explained what he had found, but I don’t remember any of that,” she said. “I overheard some-one saying something about cancer. I pulled over the surgical nurse. I looked at him and asked him, ‘Are they saying I have cancer?’ Poor guy. He was the one who had to tell me.”
Erin was shocked. Neither the emergency room physician nor the surgeon had focused on cancer as a possibility. While dodging a perfora-tion, Erin had suddenly become a cancer patient. “The surgeon thought I would need 6 months of chemo and suggested that I should ‘prepare’ myself and my children. I had no idea where I would ind the strength and what it was going to do to my children, who had already been through so much loss at just 12 and 9 years old. I was trying to process all this as a single mom.”
Fortunately, Erin’s support structure kicked into place again. Her mom was on a plane from New Jersey 24 hours later. Her friends took care of the children and lined up meals. “In these resort communities, where people live far from their relatives, they quickly ind other peo-ple who become their circle of friends, their extended family,” Erin observed. “It is a very supportive community, and I have a lot of close friends. I couldn’t keep them out of my hospital room. I am not alone in Aspen.”
Nevertheless, Erin says, “I never felt so all alone in all my life, includ-ing after my husband died. It was a really” she trails of for a long time, as though the moment is returning to her, then mumbles, “a very tough time.”
A few days later the pathology report came back: “A 6.5 cm invasive adenocarcinoma of the right colon that is well-to-moderately diferenti-ated. All margins uninvolved with tumor. Fifteen lymph nodes are nega-tive for tumor.” It meant that Erin had a very large colon cancer that did not look aggressive and did not appear to have spread.
The surgeon, however, did not believe the report because the lymph nodes he removed were too big and hard. He thought the cancer must have metastasized. So Aspen Valley Hospital sent the tumor and slides to the Mayo Clinic in Minnesota for another reading that conirmed the irst report: no spread.
Erin followed up with a local Aspen oncologist whose view was pos-itive that although her tumor was big and he could not say the surgery cured her, his review of all the recent studies indicated that chemother-apy was unnecessary, and that having the chemo would improve her survival prospects no more than 1% to 2%. In his view Erin would not need 6 months of debilitating chemotherapy or any other treatment.
For Erin it had been a wild ride. “On Thursday I had diarrhea. On Fri-day I had cancer and needed 6 months of chemotherapy. And on Mon-day I was cured,” she said. “I had a lot to process and take in. It was really unbelievable that I was being told to forget I had cancer and get on with my life.”
But Erin was not done yet. Given that she was only 48 years old, the oncologist wanted to get a genetic test to see whether she had Lynch Syn-drome, an inherited disease characterized by colon and uterine cancers that present at a very young age. The oncologist said that the test would cost over $4,000, but given her situation, Erin’s insurance company would probably cover the cost. Although cancer didn’t run in her family—rel-atives had had heart disease and heart attacks, but no one had ever had cancer of any kind—the oncologist recommended it, so Erin agreed.
This was the irst time anyone had ever mentioned the cost of any-thing. It was not the irst bill Erin had seen. The bill for the initial stool culture test had come back in the weeks between the diarrhea and the visit to the Aspen emergency room. It was a whopping $1,200. Erin as-sumed her insurance would cover it.
Because she was self-employed, Erin had bought her own health in-surance. In 2012 the monthly premium was about $800 for her and the 2 girls. She had chosen a high deductible plan, so every year she put $5,000 into a health savings account (HSA) to cover the deductible. If she did not spend it all, the remaining money would “roll over” to the next year. If she spent it all, the health insurance kicked in to cover the remaining bills. For the irst few years Erin was able to roll over some money, but recently, because of higher health care costs, she knew she would be spending the full $5,000.
Many of her friends were urging that Erin get a second opinion from a colon cancer expert. “One of the nice things about living in Aspen is that everyone knows someone,” she said. “A friend who grew up in the Houston area told me that her father has his name on a building at M.D. Anderson Cancer Center in Houston and could help open some doors there. She helped me get in contact with them.” M.D. Anderson began the process to have Erin come for a second opinion, and she began illing out the paperwork. Three weeks later, however, as Erin was about to purchase her plane ticket to Houston, M.D Anderson called back. They told her that they contacted Erin’s insurance company and that they were “out-of-network.” This meant that to see an oncologist at M.D. An-derson, Erin would have to pay, in addition to her $5,000 deductible for in-network services, another $10,300 deductible for out-of-network ser-vices. The clerk said M.D. Anderson would be happy to see her, but she had to come to the appointment with a $10,300 check. For any services over that, her insurance would cover 70% of the cost, and she would be responsible for the remainder.
“If this had been life-and-death and I thought M.D. Anderson was going to have the magic bullet for me, I would have found a way to get the money,” she said. “But given the circumstance—that I wasn’t dying—I decided to see if there was a highly regarded colon cancer ex-pert ‘in-network.’ I spent a lot of time on the phone with my health insurance company to see if they could help me ind a Colorado colon cancer expert. The representatives I spoke with were based in Michigan and didn’t have a lot of information about my network in Colorado. Af-ter several fruitless conversations with multiple representatives from the insurance company, I was directed to a website. The best I could come up with was a list of Colorado oncologists in-network with no hospital ailiation listed or designation of their speciic cancer specialty. Basically the insurance company told me to call the doctors myself and ask if they were colon cancer experts.”
Fortunately, Erin found that the colon cancer experts at the Univer-sity of Colorado Cancer Center in Denver were considered in-network; it wouldn’t cost her anything more to see them. “They were very accom-modating and very helpful. They reviewed my case with their ‘tumor board’ and spent a good amount of time reviewing my pathology, my history, and my surgical reports. I was really pleased with the care and service there.”

Ultimately, the University of Colorado colon cancer expert con-curred with Erin’s Aspen oncologist: “We would not recommend adju-vant therapy in this setting.We do recommend colonoscopy at 3 months out from surgery [and] CT imaging at 1 year.”
But Erin was still not done. Even though the Lynch Syndrome test did not show evidence of an inherited cancer, the University of Colo-rado oncologists recommended Erin be seen at the Hereditary Cancer Clinic for further evaluation of other potential genetic changes.
About a month after her surgery Erin was feeling much better. Al-though her energy was not completely back to normal, she was able to resume biking, hiking, and a full work schedule. And she had started to recover emotionally as well. Of course, the episode left her and her daughters with a host of unanswered questions: Was she cured? How much should they worry about a recurrence? Should she change her diet or exercise or do anything diferently? But Erin was grateful too—grate-ful that she had good care, grateful that her cancer was not as serious as it might have been, grateful for her life. “I am taking every day as a gift,” she said. “I am not focusing on what could happen in a year or 5 years. No one knows better than me that we don’t know what might happen tomorrow. Overall I feel really good—and lucky.”
Then the bills began pouring in. The bill for the hospital stay for the CT and surgery, with the 6 days in postsurgical recovery, was a monster $71,397.91 (Figure I.1). The largest portion, nearly $30,000, was for the operating room services. Anesthesia added another $7,155, and sterile surgical supplies in the operating room added $8,655. Six days in a hospi-tal room came to $9,031. The CT scan was $3,829, and the pathology for determining the cancer was $2,368. The surgeon’s fee came separately at $4,174. The insurance company’s negotiated rates with the hospital reduced that bill by about 8%, bringing it down to $66,382.11.
And there were other bills. The physician oice visit and blood tests for the initial evaluation of the diarrhea came to $858. Another $287 was owed for the physician visit to change antibiotics after the cramping came back. Various antibiotics and other drugs added $96.71. For all the work they did reviewing the CT scans, medical records, and pathology, the consultation at the University of Colorado seemed reasonable—maybe even a bargain—at $480.42.
Altogether there was just about $73,000 in bills after the insurance company’s savings. The total was nearly 140% of the median family in-come in the United States.