Her leg inexplicably purple, painful and double its size, University of Arizona student Aimee Snyder cried herself to sleep, desperate to avoid going to an emergency room.
She wouldn't have health insurance coverage for 28 more days. Just hold on until then, she told herself.
A healthy athlete in her 20s, Snyder had no idea that her pain was from a clot that spanned from her abdomen to her knee, blocking the return of blood from her left leg. Smaller clots were breaking off and had lodged in the blood vessels of her lungs, causing several pulmonary embolisms that put her at risk for sudden death.
Snyder was one of about 1.2 million Arizonans who do not have health insurance. And it's not unusual for people who are uninsured to forsake medical care because of cost, but that mentality can be deadly.
If the federal Patient Protection and Affordable Care Act works the way its supporters predict, such behavior could change. Health experts predict the state's number of uninsured could drop 50 percent in the next two years as a result of the law.
One of the reasons for an anticipated drop in uninsured in Arizona is that childless adults, who have been frozen out of the state's Medicaid program, will be allowed back on Jan. 1. Medicaid is a government insurance program for low-income people.
Medicaid in Arizona is AHCCCS, the Arizona Health Care Cost Containment System. The end of the state's freeze on childless adults is expected to add about 300,000 people to its rolls, provided an effort to repeal the expansion does not force a referendum.
That's not soon enough for Snyder, who was denied Medicaid before she got sick.
Money before health
In the summer of 2011, Snyder resigned from her teaching job to pursue a master's degree. In the shuffle of moving, securing a teaching-assistant job and starting classes, she missed the deadline to enroll in the UA's student health plan. She asked if she could pay a late fee and enroll. The answer was no. She would have to wait until the following semester.
Her income level was low enough to qualify for Medicaid. But Snyder learned that due to budget cuts, the state had frozen Medicaid enrollment for adults without children.
Snyder, then 28, weighed her options. She could enroll in the student plan in January. Private insurance was expensive and the choices were overwhelming. She was young, healthy and fit. She rode her bike up Mount Lemmon, ran marathons and had no history of health problems. What was another four months? It seemed like a low-risk decision.
She was wrong.
Two weeks after she rode 111 miles in El Tour de Tucson in November 2011, Snyder started having shortness of breath and thought it was anxiety from the end of her first semester in graduate school.
A week passed and the shortness of breath continued. Then on Dec. 7, the last day of classes, her leg went numb and began to swell. It got worse throughout the day and Snyder tried to ignore it. She had a lot to do and besides, she had no health insurance. An emergency-room visit could cost thousands of dollars that she couldn't afford. Quitting teaching and going back to school was a big enough financial decision. She had student loans and feared crushing debt. She went home and elevated her leg. The pain was terrible and she felt helpless.
By the next morning she had a talk with herself. She was a public-health student, after all. She needed to take control. What would she recommend to someone in her situation?
At 2 p.m. Dec. 8 she was sitting in a local El Rio Community Health Center clinic. Clinic workers helped her sign up for the Pima County Access Program (PCAP), which is not health insurance but for a yearly fee provides access to local health providers at discounted rates. PCAP's enrollment has increased by about 41 percent since the Medicaid freeze, officials with the program say. Snyder joined PCAP for $40 and paid a $30 co-pay to be triaged.
Medical staffers at El Rio were alarmed at Snyder's condition. They wanted to call an ambulance. She needed to go to a hospital right away. Snyder resisted.
The doctors pushed back. There is no price tag on life, they said.
Snyder agreed and went to Carondelet St. Joseph's Hospital, but she still couldn't help thinking about money. She declined the ambulance and drove herself. Once in the emergency room, she was flagged as a priority and doctors told her they needed to do surgery to scrape the clots out of her poor veins and place a filter below her heart to protect her lungs.
Snyder recoiled. But she was terrified by what the doctor said next - she was at a high risk of death if she didn't have surgery. And even if she survived, her leg would never return to normal.
Throughout her six-day hospital stay, Snyder asked for minimal treatment, stressing to doctors that she didn't have health insurance. She had the surgery, recovered and ran a half-marathon two months later.
Eventually she found out that she has a congenital condition called May-Thurner syndrome, in which the left iliac vein is compressed by the right iliac artery, increasing the risk of deep-vein thrombosis blood clots. She believes her athletic life and healthy diet contributed to both her survival and fast recovery.
Snyder knows she could have died from delaying seeking medical attention and says in retrospect she's ashamed she was putting money before her health. She is grateful that her doctors at St. Joseph's did not listen to her pleas to minimize treatment.
But she's certainly not the only American who has avoided medical care because of the cost.
About one person dies in Arizona every day because of a lack of insurance, says Dr. Dan Derksen, a physician who is section chair of public-health policy and management at the UA's Mel and Enid Zuckerman College of Public Health. He is not familiar with Snyder's case, but says it rings familiar.
"Sadly, this story plays out across the country for 49 million uninsured Americans," he said. "As a family physician, there are tragic consequences for the uninsured who have to delay necessary care because they don't have money."
Derksen, who helped draft a portion of the Affordable Care Act, noted the word "affordable" in the legislation. The idea is to reduce health-care spending that often spikes because of delayed care, which makes treatment more expensive. Deep-vein thrombosis if caught early is often treated on an outpatient basis with medication - far cheaper than Snyder's treatment, which was surgery and hospitalization.
After the Medicaid freeze on childless adults began in 2011, uncompensated care in Arizona hospitals skyrocketed, particularly in rural areas where there is a higher concentration of uninsured people, Derksen said. He said what's so often missed in the health-care debate is that the costs of delayed care accrue to the entire system. Studies have shown that people on Medicaid have better health outcomes than people who are uninsured.
About 18 percent of Arizonans are uninsured, says the Kaiser Family Foundation, which bases its numbers on U.S. Census data. It's one of the highest uninsured rates in the country. Texas has the highest - 24 percent.
"The U.S. pays twice per capita what any other developed country pays for health care, yet has worse population health outcomes," he said. "The evidence shows that getting the uninsured covered - through Medicaid, or by health insurance purchased in the new marketplaces - will improve health outcomes. The underpinning of the Patient Protection and Affordable Care Act is affordable health care."
Gov. Jan Brewer surprised many when she announced she would support expanding Medicaid, thus lifting the freeze on childless adults, earlier this year. Her decision caused friction with many fellow Republicans.
The Legislature passed the expansion, but not without contentious debate.
"The good news in that is that Arizona has the potential, because it is moving forward with Medicaid expansion, to have one of the highest percent decreases of uninsured in the country," Derksen said. "It will make a huge difference for people here to have coverage."
mountain of debt
Two years after her health crisis, Snyder is still paying off costs of her care. Without the Pima Community Access Plan (PCAP), however, she'd be facing much more crushing debt. The cost of a six-day stay including a night in the intensive care unit at St. Joseph's resulted in an eight-page bill for $107,000. Under PCAP terms and its agreement with local hospitals, Snyder needed to pay 10 percent - $10,700, and the hospital absorbed the rest of the cost.
Snyder did not have $10,700 and says she's fortunate her family was able to give her the money.
One month after her hospital stay, Snyder went back in for surgery to remove the filter under her heart. Though she was by then enrolled in the UA's health plan through Aetna, she had a $1,000 deductible and a 20 percent "co-share," so Snyder was on the hook for another $3,000.
She has a clear pink plastic folder of more than 30 bills ranging from $400 to $3,000 that continued to come in the mail for months after her hospital stay. The bills were for each service contracted through the hospital, like radiology, vascular specialists, anesthesiology and X-rays. She added those bills to her student loans.
She recently earned her master's degree and will continue her studies in a doctoral program. But she'll focus on maternal and child health, not the payer system.
"Insurance-policy mumbo jumbo and run-around makes me angry," she said. "Especially when it's adding confusion to my personal medical and financial decisions."
Individuals who have felt overwhelmed and confused about buying private insurance should have some relief when open enrollment in an Arizona insurance "marketplace" through the Affordable Care Act begins Oct. 1.
The marketplace can be accessed online or by phone, or with the help of trained people who will be at health clinics and other places closer to enrollment. The marketplace will screen individuals and send them to Medicaid or to the private insurance market. It will act a bit like Expedia does with airline flights, sorting out individuals' preferences and showing options that will range from bronze to platinum plans. Some Americans will be eligible for federal subsidies for their health insurance.
Contact reporter Stephanie Innes at firstname.lastname@example.org or 573-4134. On Twitter: @stephanieinnes