Yahoo Finance Managing the High Cost of a Chronic Health Condition
According to the 2012 National Health Interview Survey, roughly 117 million U.S. adults have at least one chronic health condition such as diabetes, hypertension or cancer. And a quarter of adults have multiple chronic conditions.
Even with health insurance options, Americans living with a chronic health condition often find themselves with huge out-of-pocket costs, not just for medical treatment but also for mobility devices, lost wages and modifications to their home to make it more accessible.
[Read: 7 Ways to Keep Your Health Care Costs in Check.]
Just ask Lou Ann Loveless, a mother of two in Buffalo, New York, who stopped working in 2003 after her multiple sclerosis flared up. At the time, she didn't know it was MS. After applying for disability benefits in 2005 and getting approved in 2008, she tries to stretch every dime that she can while shopping for groceries. "I realize everyone is short on money, but a lot of people [who work] have the potential to get raises," she says, adding that the cost of living adjustments on disability are often less than 3 percent -- in years that they happen at all.
"It is a constant exercise in juggling, trying to figure out where I'm going to get the most of my dime and quarter," Loveless says. "Lack of money creates stress, and that can create flare-ups," she adds.
While each individual's financial and medical situation is different, here's how some Americans with chronic conditions handle the extra financial burden.
Taking on freelance work. For some individuals with a chronic illness, working long hours is a necessary evil so they can keep up with bills. "Some people are working two jobs despite the fact that most are probably not healthy enough to work one," says Michael Osso, president and CEO of the Crohn's & Colitis Foundation of America. Others turn to freelancing, which is more flexible but also lacks benefits like health insurance.
A few years ago, when Jenn Greenleaf, a teacher and writer in Boothbay, Maine, was diagnosed with hypersomnia (a condition that triggers sleepiness throughout the day), she was struggling to keep up with her work teaching at a summer camp. Last summer, she went back to work at the camp part time to try to make up the difference with freelance writing assignments that allow her more flexibility to sleep when necessary. She and her husband are both self-employed and buy health insurance through their state.
The medication her doctor advised her to take wasn't covered by her health insurance, so she takes a less effective medication that helps keep her awake for part of the day and requires her to sleep for a few hours in the middle of the day. "I have what I refer to as 'crash days' once a month, sometimes twice, when I sleep for about 12 hours on top of what I sleep during the night," she adds. "Those days are incredibly tricky."
Greenleaf doesn't collect Social Security Disability Insurance. Those who do collect insurance risk potentially losing their disability benefits if they make too much income from freelancing, and many people can't get a clear answer on what that amount is.
[Quiz: Test Your Medicare Knowledge.]
Moving in with family. In 2006, Jaime (who asked to be identified by her first name), was diagnosed with Crohn's disease at age 25 after suffering from the illness for most of her life. Because her Crohn's disease had gone untreated for so long, she'd also developed unmanageable thyroid disease and arthritis. Jaime tried to continue working, but by January 2012 her situation changed. "My symptoms were so out of control that I would either have to leave work early or I would have to beg them to let me work from home," she says.
After losing multiple jobs through a series of layoffs, Jaime realized she was too sick to find another job. She petitioned her mortgage lender to allow her to restructure the loan to no avail. She also had medical bills piling up on a credit card to the tune of around $20,000. Jaime sat down with her parents to discuss her options, and her mom told her: "Your only responsibility is your health. Whatever happens with the house happens."
In 2013, Jaime sold her home in a short sale, moved in with her parents in Tampa, Florida, and went on her mother's employer-sponsored health insurance as a disabled dependent. A disability lawyer helped her apply for Social Security Disability Insurance, and after appealing her initial denial, she won six months of backdated disability checks.
Drug assistance programs. Surging medication costs hit those who need to take prescriptions on an ongoing basis and those who are on multiple medications the hardest. Most of Jaime's medical debt is from medication-related fees not covered by her insurance. Before going on her mother's health insurance, she was on a health plan that didn't cover her medication, so she was able to receive it for free through a patient assistance program offered by the drug company to people who are uninsured or underinsured. However, she still needed to pay upwards of $400 every six weeks for an infusion treatment to get the medication administered.
[See: 10 Things You Need to Know About Medicare.]
"Each of those [patient assistance] programs has different criteria, but it has to be private insurance," Osso says. Those on Medicare or Medicaid typically don't qualify for drug assistance programs even if the drug isn't covered by their insurance.
While Americans' experiences with chronic conditions are vastly different, Loveless' words resonate with many: "It does not pay to be sick."
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