Vanessa Swain, age 13, has been battling juvenile arthritis (JA) since she was a toddler, and for most of her life, her mother has been by her side, helping her deal with every aspect of her condition.

“I was a stay-at-home mom for 10 years, so I was always with her, always the one to give her meds, always the caretaker,” Dana Swain says.

A lot of care has been required to manage Vanessa’s arthritis, including frequent doctor visits. And the mother daughter duo never missed an appointment – at least until last year, when the economic downturn hit home.

The Swains live in Michigan, which has one of the nation’s highest unemployment rates, due in great part to the contraction of the auto industry there.

Dana’s husband, Don, was one of many in the state who was laid off. 

With their income reduced, Dana was forced to work full-time and that doesn’t leave a lot of time to get Vanessa to her clinic visits.

“I only have a certain amount of days I can take off, and unfortunately, I am in the medical field at a cancer center and you can't just up and leave,” Swain says. “I’d be worried about getting written up,” she continues. “If [Vanessa] has to go, am I going to lose my job? And then what do you do? You’re back at square one.”

The family has had to reschedule several of Vanessa’s appointments in the last year, and her grandmother is now pitching in to help with transportation. But no matter the challenges, the family agrees on one thing.

“Her health is the most important thing,” Swain says. “We will make it work. It’s not always easy, but somehow we muddle through.”

Even with Insurance, Health Takes a Hit

The Swains aren’t the only ones feeling forced to make difficult decisions between health care and job security.

Rheumatologists say that as the economy took a downturn and unemployment skyrocketed, they expected patients to skip appointments because of lost health insurance or unwieldy transportation costs. And they have seen that.

But doctors say what’s more shocking is how many people are having trouble making it to appointments even though they still have insurance and a job.

“One family missed a couple of appointments because the mom and dad work in the same place. They’re feeling like they have to be at work every day so they don’t get laid off,” says Barbara S. Adams, MD, a pediatric rheumatologist at the University of Michigan Health System in Ann Arbor.

Other doctors say they’re seeing the same thing.

“Yes, it’s a much more common problem now than it has been in the past,” says Daniel Lovell, MD, a pediatric rheumatologist at Cincinnati Children’s Hospital Medical Center, which serves patients in Ohio, West Virginia, Kentucky and Indiana.

“If your child has a more severe case or is in a more active phase of disease, those visits could be as often as every couple of weeks or a month and that can end up being enough days off of work that it puts people at jeopardy at work,” Dr. Lovell says.

Rheumatologists say their adult patients with arthritis are cutting their health care, too. 

“The thing that has surprised me so much is the generalized anxiety in the population,” says Leslie J. Crofford, MD, chief of the Division of Rheumatology at the University of Kentucky Hospital, in Lexington. “People are afraid of losing their jobs so they want to minimize the time away. So for example they’re afraid to take the time off to get their blood drawn, or they’re delaying appointments so they don’t have to miss a day of work.”

The Dangers of Uncontrolled Disease

Doctors say in some cases, patients will be OK if they miss an appointment or two. But in other cases, there could be serious consequences.

“For us as a doctor, the whole issue is, if we don’t see kids often enough to know what is going on and what may be going wrong, then their disease can become a lot worse,” Dr. Adams says.

That goes for adults, too.

Doctors say regular visits and routine blood tests allow doctors to notice changes in disease activity and change medications if disease activity escalates. Failure to control autoimmune conditions like rheumatoid arthritis and juvenile arthritis can result in long term joint damage and impaired function.

Doctors say active inflammation generated by inadequately treated arthritis can also increase your risk for coronary disease. Getting sicker can also cause your blood pressure to rise, and medications that people take for chronic diseases often have serious side effects they can’t always see or feel.

For example, medications commonly used for these diseases can cause changes in liver enzymes. Undetected, that can cause potentially irreversible liver damage. 

Delaying surgeries like knee replacement may require patients to take more pain pills, which increases their risk of falls and often leads to increased costs and worsening injuries down the road.

“This is so troubling because we’ve had so many studies done on chronic illness and there’s a chronic care model that supports ongoing evaluation of patients to prevent the progression of their disease,” says Mary Ryan, a nurse practitioner with Kansas City Family Medical Care, in Missouri.

“That saves us health care dollars, and right now, we can’t do that because the patients don’t come in. They don’t see that they have any choice but to stay home and hope their disease stays at least stable. A lot of choice has been taken away from the patients,” she says.

Hard Choices in a Soft Economy

Studies show that the problems faced by people who are trying to manage their health and protect their finances are widespread.

A poll conducted in December by the Kaiser Family Foundation found that within the last year, 31 percent of those asked had skipped a dental visit or checkup, and 29 percent had put off or postponed getting health care they needed.

“People are coming in less often for control and follow-up on their chronic diseases. They're coming in only when it’s a problem,” says Ryan.

“We have seen a lot of people, when they come in, they are sicker. Their blood pressures are higher. They have more swollen joints because they are trying what they can at home. They're trying to wait it out and see if it goes away or gets better,” she says.

The same Kaiser Family Foundation poll also found that 23 percent of those surveyed had skipped a recommended test or treatment.

Among the blue collar patient population treated in the orthopaedics department at Johns Hopkins in Baltimore, Bashir Zikria, MD, says he has seen at least a dozen people who have delayed much needed surgery in the last year, fearful it would put them out of work.

That delay means risking loss of function, jeopardizing their ability to work at all.

“I had a truck driver who injured his shoulder. I told him he needed surgery,” Dr. Zikria says. “But he said he couldn’t do it because he was afraid of losing his job because it would require so much time off."

"He lifts 50-pound barrels. He said he could tell his [boss] he could do lighter work, but he couldn’t go three months not lifting anything,” Dr. Zikria says. "They still make him lift 25 pounds. It’s tough out there.”

Dr. Crofford says many of her patients with chronic diseases in rural Kentucky who have physically demanding jobs in areas like manufacturing have been afraid to even ask for adjustments in their job duties because they worry it will get them fired.

“There are incidents where repetitive motion or the kinds of work they are doing are aggravating their condition and in good times people would say – ‘hey, could you write me a letter asking me to be reassigned so I’m not doing something that say aggravates my shoulder,’” Dr. Crofford explains. "But now people don’t want to do that because they are afraid of getting laid off. So there are many ways that fear of the economy affects patients and their rheumatic diseases,” she says.

“This is as bad as I’ve ever seen it over the last 25 years,” Dr. Crofford continues. “It’s just very noticeable and very pervasive.”

Stress Takes a Toll on Children

Dr. Lovell says that financial anxiety isn’t just affecting adults. He says some children he sees haven’t been telling their parents when their symptoms worsen because they are worried about how their disease is affecting their family’s financial health.

“Some of them are, I think, quietly internalizing their concerns about how extra doctor visits, extra lab visits may impact the budget,” Dr. Lovell says. “You see elementary aged kids thinking about this. So it's going down to a younger age group that’s thinking about this and wondering what the impact of their disease has on the family.”

Dr. Lovell says some of his young patients are also expressing resistance to new treatments and when he probes into the reason, they talk about the cost.

“Many times it’s younger kids who really don’t understand the role of insurance. So when you talk about a biologic cost of $15,000 a year, a little child can sense that’s a lot of money, but what they don’t understand is that insurance can pay for a large proportion of that,” he says.

“So the kid’s thinking this is a $15,000 hit on the family budget when they are seeing their parents struggle with $100 or $200 charges," says Dr. Lovell.

“You have to be sensitive about what kids understand and don’t understand about the big picture so they don’t carry home anxieties that aren’t based on fact,” he continues.

Dana Swain has noticed that her teenage daughter, Vanessa, has some financial concerns.

“She is like our little caretaker,” Dana says. “So her thing is, ‘do we have enough money for that?’ A week ago, she bent down, and I heard her crack her knee and say ‘ow.’ She didn’t hit it. It just popped.

“I’ve been asking her for the last few days, ‘how are you feeling,’ because I want to keep an eye on things, and she says, ‘I’m fine. I’m fine.’ And I ask her, ‘are you really fine or are you just saying that?’ Because she is the worrier of the group,” Dana says. “I know she worries about our finances.”

James McKoy, MD, a rheumatologist and pain specialist in Honolulu, says he sees these same stresses with patients of all ages that he treats. And he says he worries because this kind of anxiety actually makes arthritis worse, which can set up a vicious cycle.

“It actually increases pain. And when that happens, that would require more visits to a physician, requiring more time for a parent taking their child or themselves to the doctor. So the economy is having a major effect on anyone with any ailment,” he says.

Doctors stress that some states have programs to help cover the costs of treating children with chronic medical problems. Drug companies and foundations have patient assistance programs and some charities will help provide transportation to medical appointments.

Medical professionals also say they’re also doing their best to work through these problems with patients too. Doctors and hospitals are scheduling lab tests closer to home, offering more appointments earlier and later in the day and even offering gas cards to help cover transportation costs.

“We’ve had to change our business because of the economy,” Ryan says. “It’s heartbreaking. It's absolutely heartbreaking.”