Last year, a $1 million lifetime cap on health care expenses meant nothing more than fine print on an insurance policy to Jim Bucher.
"I never thought I'd hit that," Bucher said. "Who's going to spend a million dollars?"
That was before his 6-year-old son, Landon, was diagnosed with leukemia last July.
What followed were hospital stays that lasted weeks at a time, expensive chemotherapy drugs and a bone marrow transplant at Duke University Hospital.
Landon has now accrued about $700,000 in medical expenses, and there are still some hefty outstanding bills.
For Jim Bucher and his wife, Patty, health care reform can't get here fast enough. The act signed by President Barack Obama in March eliminates lifetime caps from health insurance policies.
That part of the law goes into effect Sept. 23, one of the earlier pieces to fall in place. But because the Buchers have an existing policy, the cap will stay until their policy is renewed on Jan. 1.
In the meantime, Bucher, 40, bird-dogs his medical bills, organizes fund raisers and spends hours on the phone with insurers and benefit specialists.
"It's turned my life upside-down," said Bucher, a mortgage loan officer.
It's also given the Virginia Beach resident a new perspective on health care reform. Before, he didn't really think government should get involved. "The way it was presented, it seemed like a negative thing. I figured, 'I have insurance, so I don't need to worry about it.' "
Now he's finding out just how critical the new law will be to his family.
For one thing, the label of "pre-existing condition" that his son now carries cannot be used to deny him insurance coverage or charge him prohibitive rates. That provision starts Sept. 23 for children and in 2014 for adults.
The elimination of lifetime limits will also help Landon, eventually, along with annual limits, which will be prohibited starting in 2014.
People affected by lifetime and annual caps are usually those who have suffered a major medical crisis, such as a car accident or the need for high-dollar procedures such as transplants. There are also certain chronic diseases that rack up medical bills.
Ellen Riker, a policy adviser for the National Hemophilia Foundation, said treatment for severe cases of that condition, in which blood doesn't clot properly, can cost $300,000 a year. That organization is one of about 60 that created a "Raise the Cap" coalition that commissioned PricewaterhouseCoopers to do a study of people affected by insurance caps.
The study found that about 55 percent of individuals with employer-provided health insurance - about 91 million people - were subject to lifetime limits in 2009. More than 20 percent of people covered by employer plans had lifetime limits of $1 million; 32 percent had limits of $2 million or more. Self-insured employers were more likely to have lifetime limits.
As health care costs were increasing, the limits were reached earlier. Because of that, some companies were getting rid of lifetime limits or raising them. Still, an estimated 20,000 to 25,000 people hit the cap in 2009, according to the study.
Michael Dudley, president of Optima Health, said it's unusual for people to hit their cap, but caps have been a way for insurers to keep expenses in check so premiums are more affordable. His concern with the health care overhaul is that while some provisions go into effect this year, some elements that would help balance the equation, such as mandating that people be insured, will not kick in until 2014.
"To remove the lifetime limit will have costs associated with it," Dudley said. "It may not have a huge impact in terms of the number of people, but when you add them all up, it does."
Because of that, he expects premiums to rise.
Meanwhile, those who hit their limit before caps are eliminated have a short list of options. People pay more out of their own pockets, and hold fund raisers. They try to curtail medical expenses. They file for bankruptcy. Or they can "spend down" their assets in order to qualify for Medicaid, the state and federal insurance for the low-income.
Erin Moaratty, a spokeswoman for the Patient Advocate Foundation, said that organization often helps patients find alternative sources through charities or by working with health care providers who offer discounted rates. Sometimes hospitals will "write off," as charity care, expenses that families can't pay over their limits.
Insurance companies, meanwhile, have been implementing some aspects of the act.
For instance, some major insurers have announced that they will end the practice known as rescission, which involves scrutinizing the applications of people who develop costly illnesses and dropping their coverage based on minor misstatements. Also, some health plans are allowing dependents up to age 26 to stay on their parents' plans ahead of the September deadline.
Riker is hoping the same will happen with lifetime caps: "We are trying to encourage the Secretary of Health and Human Services to reach out to insurers to see if it can't be done sooner."
Tracy and Lance Cleghorn of Suffolk will breathe a sigh of relief when their insurance policy is renewed in January. That's when the $2 million limit on their insurance expenses will fall off their policy.
Their 7-year-old son, Nicholas, was diagnosed with hemophilia shortly after birth. Since he was a year old, he's had preventive infusions three times a week that help his blood to clot.
Before the treatments, he was having a bleeding episode every couple of weeks, which once landed him in the hospital for five weeks. Since the treatments started, he has rarely had a problem.
The treatments, though, cost $10,000 a month, and Nick's parents expect he will need them for life.
While most parents might not worry about their children's insurance until they're about to graduate or age out of their parents' insurance, Nick's parents started thinking about it when he was a toddler: Would his condition keep him from getting insurance as an adult, or would an insurance cap eventually force him to stop the treatments?
They don't think they'll reach the cap before it's eliminated from their policy in January, but they can't be sure.
"All it takes is a single catastrophic event for you to cap out," Tracy said.
Other health care reform provisions will help their son, such as ridding the system of pre-existing-condition policies and allowing them to keep Nicholas on their insurance until age of 26.
Those same provisions will benefit Landon Bucher, whose illness dates back to last summer, when he first started feeling tired and sick. His lymph nodes were swollen, he had bumps on his neck, and his eyes were puffy. At first, the Buchers attributed the symptoms to mosquito bites and swimming pool chlorine.
During Fourth of July weekend, Landon developed a fever and started vomiting. A visit to his pediatrician found his white blood cell count off the charts. He was diagnosed with acute lymphocytic leukemia, the most common cancer in children, and was admitted to Children's Hospital of The King's Daughters by the end of the day.
Jim and his wife, Patty, chronicled their story on "Caringbridge," a website that families use to update family and friends on a relative's illness. In mid-July, Jim wrote:
"To be honest, I have not yet taken a close look at my own insurance to see exactly what is and is not going to be covered in OUR case. That was never a concern to me. I am confident we will be okay, and we will be fine... however, there are others out there that are not as fortunate as I am to have adequate insurance coverage."
He went on to talk about participating in fundraisers for cancer services and research. It wouldn't be long before he needed to raise funds for his own family.
Several early courses of chemotherapy did not work against Landon's cancer, and doctors continued to change medications and intensify treatment. By August, the family was told he needed a bone marrow transplant. Landon was scheduled for a transplant at Duke on Dec. 8.
Leading up to that were weeks of testing. After the procedure, Landon needed to stay in the Durham, N.C., area for at least 100 days. So the family found an apartment with a three-month lease. The Bucher s' health insurance policy didn't cover housing and travel, so their out-of-pocket bills soon started to mount.
Patty and Jim juggled caring for Landon in North Carolina and taking care of their other son, Chase, who is now 3.
The financial concern paled in comparison to their worry about Landon. One of Bucher's Caringbridge postings read:
"One of the worst moments, and one that I know pierced Patty's heart, was when he was laying in the bed on his side, curled up in the fetal position, drifting in and out of "sleep". He looked up at her, unable to lift his head, and whispered "I'm sorry Mommy" before falling to sleep again. He must be wondering what could he possibly have done to deserve all of this, and we have made it a point to explain to him numerous times that this is not his fault, and it's nothing he has done."
The transplant was successful and Landon returned home in late March. He still has weekly blood draws at CHKD and takes five medications a day. He won't return to school until next year because his immune system is still on the mend.
While most people may take a cursory look at their "explanation of benefits," Bucher began combing over his, especially after a representative with his insurance company told him early this year the bills had exceeded Landon's lifetime limit.
He went home early that day, too upset to work, and spent the next several days on the phone with lawyers and financial experts trying to figure out a way to liquidate his assets, file for bankruptcy, even get a different job with a different insurance policy to reset the starting point.
Luckily, when he checked Landon's medical bills himself, he realized the amount cited to him over the phone was the amount billed, not the amount paid.
He found out just how difficult it is to keep track of where you are on the lifetime limit clock. Health care providers rarely receive the amount they charge because insurance companies negotiate to pay discounted reimbursement rates for specific services, or they challenge certain charges.
"I go through all of my insurance now, head to toe. I could probably sell insurance now. I'd call on every single bill."
Landon's medical bills are smaller now, but Bucher said there are still $400,000 worth of outstanding bills that are being negotiated: "It's going to be close."
And because Landon's condition is so fragile, a fever can land him back in the hospital. In fact, he spent last weekend at CHKD.
F amily members and friends have held golf tournaments, children's carnivals and silent auctions to put money in a trust account to pay for the medical expenses that insurance doesn't cover. A CHKD spokesman could not comment on the Bucher case specifically but said in general that when families are unable to pay bills over their limit, the hospital writes off expenses as charity care.
For the Buchers, the past 10 months have been an education on the expense of medicine and the complexity of insurance billing. An e-mail Bucher recently sent to friends and family telling them about their latest fundraiser read:
"Soon, with the recent Healthcare Reform, the 'cap' on insurance coverage will no longer be allowed - ironic, as I initially did not support any sort of government sponsored healthcare reform... and as it turns out, I will be one of those who benefits the most from it."