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The message boards on the Spondylitis Association of America's web site light up with talk of difficulties with insurance companies: inadequate coverage for prescription medications and treatments such as physical and occupational therapy; problems with co-pays and deductibles; and lack of coverage for pre-existing medical conditions.

It is the last of these-pre-existing conditions-that Karrie Shogren knows well. An assistant professor of special education at the University of Texas at Austin and a member of the SAA board of directors, Shogren first showed symptoms associated with ankylosing spondylitis (AS) during her last year of undergraduate studies. It took about three years for her to receive a diagnosis of AS, a time during which she experienced ongoing issues with insurance coverage and access to specialists to obtain a diagnosis.

Because she was a student, she found that her student health insurance policy did not provide the level of coverage she needed, so she was forced to take a job during her master's degree study that provided insurance benefits. The coverage, however, was with a "relatively restrictive HMO," she says, which led to problems with receiving authorization to see the appropriate specialists to obtain a diagnosis. Most of these problems arose because Shogren had a pre-existing medical condition.

"I had to incorporate health issues into my plans and decision-making process and had to make some difficult choices," says Shogren. "I also had to learn to advocate for myself with the insurance companies . . . particularly in the early years when my symptoms weren't managed well."

Posters on the SAA message boards echo Shogren's frustrations. In one post, a frustrated AS patient writes: "There are few things more frustrating than dealing with insurance companies . . . I've had to battle with many insurance companies over the years. I think they count on a certain percentage of people giving up. The problem with AS is that you are more likely to give up, as you're already tired and overwhelmed to begin with."

A pre-existing condition is any condition-physical or mental-for which medical advice, diagnosis, care or treatment was recommended or received within a six-month period immediately preceding an individual's enrollment in a health plan. Certain conditions, such as pregnancy, cannot by law be considered a pre-existing medical condition. Nor can genetic information about an individual's likelihood of developing a disease or condition, unless a doctor diagnoses the disease or condition. Many health insurance providers consider AS a pre-existing condition.

The definition of a pre-existing condition may vary considerably from one health plan to another. In fact, some policies consider certain medical problems to a pre-existing condition even if the individual did not know they had the problem before buying a policy or joining a health plan. Thus, insurance experts say, consumers should become completely familiar with policy definitions and provisions prior to purchasing an insurance policy.

Location, location, location
The question becomes, then, how do people with pre-existing conditions obtain health insurance or how do they ensure that their health insurance coverage remains intact if they change jobs?

Obtaining health insurance can be tricky for people with a pre-existing medical condition. Insurance companies are naturally reluctant to write policies for people who are likely to need expensive treatments and medications over the course of their illness.

"Unfortunately," says Mila Kofman, of Georgetown University's Health Policy Institute, who studies issues concerning the uninsured and underinsured, "there are not many [health insurance] options for people with pre-existing conditions."

Kofman says that where an individual with a pre-existing condition lives may be a key factor in getting health insurance. "Each state is different," she adds. "There are more options in New York than there are in Utah, which has few options [for insurance]."

On its web site, www.healthinsuranceinfo.net, Georgetown's Health Policy Institute publishes consumer health insurance guides for most states. These guides provide detailed information about consumer rights and protections under federal and state laws. The New York guide, for example, says that the Empire State "has enacted comprehensive reforms to expand your access to health insurance and to guarantee fair pricing of policies." The Utah guide, on the other hand, says that "your health insurance options [in Utah] are somewhat dependent on your health status," meaning that if you have a pre-existing medical condition, your choices for health insurance coverage in the state are limited.

Group health plans the best route
The best route for an individual with a pre-existing medical condition might be group health insurance. These plans are usually sponsored by an employer, union or professional association and cover at least two employees. They typically cover physician visits, surgery and hospitalization for ongoing illnesses or care through a health maintenance organization (HMO). HMOs are centralized service providers that couple a general medical practitioner with specialists upon referral. They also cover physician visits, surgery and hospitalization, as well as reduced-rate prescription medications.

Unfortunately, many group health insurance plans, like other health insurance policies, have what are called pre-existing condition exclusion periods. This is the time (usually six months) during which a health plan will not pay for covered care related to a pre-existing condition. If, for example, an individual has AS when he starts a new job, his new employer-sponsored health plan could deny coverage for AS-related care for a specified period of time. At the end of that period, however, the plan must cover the cost, minus co-pays and deductibles, of his AS care.

"When you switch jobs," says Kofman, "and you had continuous coverage [no break in insurance cover for more than 63 days, according to federal law], then pre-existing condition exclusions must be reduced or eliminated." In other words, the exclusion period is not open-ended and must be stated in benefits materials.

If you had no prior insurance coverage (or a break in insurance for more than 63 days) and took a new job, employer-sponsored health plans can impose exclusions on coverage for the condition you had when starting the job. However, that exclusion period can last for no longer than one year. For example, if an individual has cancer and no insurance coverage, the employer can impose exclusions for cancer-related care for one year. When that year is up, the employee is eligible for coverage under the employer's health insurance plan.

In both cases-the AS and cancer-the insurance plan must pay for any unrelated health services or conditions that arise once coverage has begun.

"There are possibilities, however, that some people can never get health insurance," says Kofman. "In the United States, employers voluntary offer health benefits; they are not required to do so."

As part of this system, the employer has flexibility on coverage. Some employer health plans may cover cancer-related care, but only up to a certain dollar amount. Kofman says that employers can do this as long as the same rules are applied across the board to all employees covered under the plan.

Note: Part II of this article is available now in the SAA Member Area - click here for the full article. Part II will also appear in the next issue of Spondylitis Plus.