1. "Your deductible is only the beginning."
Ellen Stephenson, 57, was fully insured when she was diagnosed with an aggressive form of breast cancer eight years ago, so she never imagined she would be on the hook for $100,000 in medical bills. But after meeting her plan's $3,500 annual deductible, she has to pay another $40 for each doctor visit and another $250 for each test. Over years of treatment, those extra costs have added up, and there's no end in sight. She's still being treated for the cancer, which has spread to her pelvis, spine, brain and lungs. "It's a challenge," says Stephenson, who was the director of a nonprofit before her illness. "I don't know what will happen, but right now my physician's office is very, very kind and is working with me."
Consumers typically assume that once they meet their health plan's annual deductible, the plan pays the rest. Not true, says Nancy Metcalf, a senior program editor at Consumer Reports Health, who notes consumers still often have to kick in thousands of dollars in co-pays and other expenses. And those costs seem to be rising. The average out-of-pocket medical costs hit $3,091 in 2006 (the most recent data available), up 26% from 2001, according to the Center for Studying Health System Change in Washington. And workers will likely shoulder an even bigger chunk of their health bills in the future. A report last year by consulting firm Mercer found that 57% of the 1,100 employers it surveyed planned to shift "a somewhat greater share" of the health care cost in 2011 to workers. Many plans don't cover seemingly common care such as fertility treatments.
2."Avoid the individual market if you can."
Buying individual health insurance isn't as easy as having a clean bill of health and enough cash. Insurers can and often do refuse to sell policies to individuals with existing conditions, says Wendell Potter, a senior analyst at the Center for Public Integrity. Those "preexisting conditions" aren't limited to serious illnesses like cancer or diabetes seemingly minor ailments like corns or cataracts might also be grounds for disqualification. The Affordable Care Act, the health insurance legislation signed into law a year ago, would prohibit the practice, but it doesn't take full effect until 2014. Until then, consumers are on their own.
Should an insurer agree to provide coverage, it will almost certainly be costly and confusing. The average out-of-pocket costs for people insured individually is almost double what people covered by an employer pay, according to the Center for Studying Health System Change. And Metcalf says that a consumer likely won't know what out-of-pocket expenses occur until they get sick; for example, the same plan may cover in-patient treatment for a heart attack, but only a small part the outpatient care for a breast cancer patient. Better to extend coverage through Cobra if you can, try to get on a spouse's policy, or see if you're eligible for coverage through a professional association.
3."If you fight hard enough, we'll back down."
Don't assume that because your insurer initially rejected a claim that it won't eventually pay up. You just need to fight harder. In fact, many companies routinely reject claims, while others regularly turn them down on a technicality. "If the treatment is denied, and you and your doctor think it was necessary, you definitely should appeal," says Cheryl Fish-Parcham, deputy director of health policy at Families USA, a nonprofit health-care advocacy group. A few areas are responsible for most of the appeals, according to a study in the 2003 Journal of the American Medical Association. The report found that more than a third of all disputes were about whether treatment was necessary and more than a third were over the contractual agreement of the plan.
Persistence often pays off. About a third of the contractual disputes were overturned, and about half the medical necessity disputes were reversed. One biomedical engineer, who asked not to be identified, spent more than a year battling his insurance company to get his wife's physical therapy covered. The insurer was paying for her expensive MRIs and genetic tests but not physical therapy because the doctors had a hard time diagnosing the neuromuscular disease; without a clear diagnosis, the insurer was unwilling to pay for coverage. Another glitch the insurance company was using outdated research on medically appropriate treatment, so physical therapy wasn't even included on its list. "You really need to know the science of your disease because they don't," says the husband, who did much of his own research. Some, but not all policies and states, allow for an appeal outside of the plan. The Affordable Care Act will provide consumers with a formalized way to appeal and will create an external review process.
4."We will pay out-of-network expenses."
Yes, there are times when insurance companies will completely cover care even if it's provided by an out-of-network provider. That typically occurs when a plan covers the treatment but an in-network provider often a specialist is not available close to home or when there's an emergency and you have to get care at an out-of-network hospital. If you know ahead that you're going to an out-of-network provider because no one is available in your community, get the insurance company's permission in writing, says Helen Darling, president of the National Business Group on Health, a nonprofit association of large employers. That way, months later if the insurer disputes the claim, there's proof of the agreement.
5."We won't cover therapy. And how does that make you feel?"
The Mental Health Parity and Addiction Equity Act of 2008 was supposed to improve mental health coverage by requiring companies with more than 50 workers that offer mental health benefits to have the same deductibles, co-pays and treatment limitations for mental health and substance abuse care as they do for medical or surgical treatment. The law, however, doesn't require mental health coverage so some plans responded by dropping it completely. "In mental health, people assume certain things are covered and they're actually not," Allison Wishon Siegwarth, a policy analyst at The Bazelon Center for Mental Health Law in Washington.
Nearly one-third of employer-provided plans with more than 50 workers changed their mental health benefits, according to the Kaiser Family Foundation/Health Research & Educational Trust 2010 annual survey of employer benefits. Of that group, about two-thirds raised or eliminated the limits on coverage for this care, but 5% dropped it. Wishon Siegwarth warns consumers to check even if they are covered because many plans don't include treatment for conditions such as eating disorders.
6. "Go ahead, buy the brand-name drug."
The pharmaceutical industry spends billions to get consumers to ask for drugs by brand name, and the insurance industry certainly isn't standing in its way. Insurers and employers have increasingly shifted the costs of prescriptions to patients. As it is, the average co-pay for so-called "fourth tier" medications the most expensive was $89 in 2010, up 20% from 2005. Ten years ago, the fourth-tier didn't even exist the most patients would pay for medication was typically $29.
Compare that to the price of generic drugs, which work just as well as brand-name medications. The average co-pay for a generic prescription is $11. But the insurance companies won't be the one to tell you. Jackie Kosecoff, CEO of Prescription Solutions, says insurance companies do make generics significantly less expensive than brand name drugs but it may not be enough: "People get conditioned by the advertising that they brand-name is the latest, greatest and best." Another problem the doctors continue to prescribe them.
7. "Our reputation isn't what you think it is."
A brand name or a national presence may not mean much when it comes to health care coverage. Because plans vary by state, an insurer's plan may be radically better in one area of the country than another. Or so says the nonprofit National Committee for Quality Assurance, which accredits and ranks health insurers. Companies like Aetna, Kaiser, and Group Health, which administer plans across the country, are highly-rated in some states, poorly evaluated in others. Meanwhile, some of the top-ranked insurance plans - like Capital Health Plan, Geisinger Health Plan and Tufts Associated Health Maintenance Organzation aren't nationally known at all.
"There's more variation in terms of how health plans take care of their patients than people realize," says Andy Reynolds, a spokesman for NCQA. The ranking is based on several factors including how often insurance companies use scientifically-supported care to prevent or care for medical conditions. Patients also have a say in the rankings by rating customer service and how well doctors communicate. There's also a score for how well the plans verify providers' credentials and safeguard privacy. Married couples who are trying to decide between his plan or hers may find it particularly useful as a starting point.
8. "We don't speak your language."
Yes, many insurers offer customer service in languages other than English, but the only language in which it's truly critical to be fluent is insurance-speak. That means understanding Current Procedural Terminology (CPT) and diagnostic codes from the International Classification of Diseases (ICD),says Jane Downey, a speech- language pathologist in Albany, N.Y. and president-elect of the New York State Speech Language Hearing Association. It might not seem fair to ask consumers to understand all that, but experts say it could make the difference between getting coverage or not.
Fortunately, the internet is a wealth of resources for patients trying to get information. That means understanding the technical codes and avoiding words that raise red flags for the insurance companies, says Lisa Geng, co-author of "The Late Talker," about caring for her speech-delayed son: "Do not use the words 'childhood development' or 'delay.' The insurance company will think the child will outgrow it." But the words "developmental disorder" rather than "development delay" may unlock the door. "You really have to indicate it's a treatment and not enhancing," says Downey.
9. "We'll do anything to keep you in network."
Your favorite doctor is out-of-network, but you don't want to end up with a bill the size of your first mortgage. Finding out the actual cost, however, can be difficult, say consumer groups: When patients call and ask how much an out-of-network procedure will cost, insurers will typically cite the plan's general benefits. If you actually want to know what you'd end up paying, it will take more work -- probably CPT codes for the exact procedures you'll need, plus a strong sense of determination and a fondness for hold music.
In-network doctors are simply less expensive for the insurance company. Robert Zirkelbach, a spokesman for America's Health Insurance Plans, says insurance companies want consumers in the plans because it's less expensive and the insurers have screened the providers to ensure quality. "Health plans are able to negotiate significant discounts," he says. Members' going outside the plan can also be bad publicity, indicating they may not be satisfied with the doctors in the plan, Darling says.
10. "You'll get your rights -- eventually."
Assuming the Affordable Care Act remains in place, consumers will be entitled to a number of new protections and coverage. For example, the Patients' Bill of Rights is expected to address some of the most challenging obstacles for many consumers. For example, consumers in health insurance plans will no longer have to pay for routine screenings and check-ups provided in network including routine immunizations and cancer screenings. Insurance companies are required to notify consumers of the changes as they go into effect some don't begin until 2014.
But it will still be up to consumers to learn the details of the plans. As it is, many are confused. A February Kaiser Health Tracking Poll found that nearly half of Americans are confused about the status of the Affordable Care Act. Fifty-two percent think the law still exists, but 22% think it has been replaced and another 26% aren't sure. "I think a lot of people don't know what they have a right to and aren't asking to get them," says Fish-Parcham at Families USA.