Image: Sick child © Bananastock, age fotostock

Millions of Americans suffer from illnesses that add insult to injury by being virtually uninsurable.

Patients with controversial or poorly understood conditions often can't get coverage, even if they have robust employer plans. Many with diagnoses such as temporomandibular joint disorders or autism are left to pay significant out-of-pocket costs to treat their conditions.

Take TMJ disorders, which typically involve pain around the jaw and difficulty chewing and speaking. Some 35 million Americans, or 12% of the population, suffer from it. For some people, it's mild and intermittent, while others have unrelenting pain that precludes them from eating solid food.

Yet labeling the complex condition TMJ can be the "kiss of death" in terms of getting insurers to cover it and dentists and doctors to see patients, said Terrie Cowley, the president of the TMJ Association, a patient-advocacy group in Milwaukee.

"It's unconscionable this mess we are in," she said.

Sometimes employers and insurers don't want to pay for medical treatments that don't help or, worse, harm people further. By refusing to cover treatments that aren't proved to be effective, health insurers say they can hold down premiums for the broader pool of their members.

But it's not always so straightforward. If you have a diagnosis that insurers don't want to touch, you should investigate your options, health care advocates say.

How to fight back

Here are eight tips to protect yourself.

1. Talk with your doctor or health care provider about your treatment options. Ask whether the ones he or she recommends are supported by scientific evidence, said Dr. John Santa, the director of Consumer Reports' Health Ratings Center in Yonkers, N.Y. Or are the recommended treatments based on the doctor's expert opinion or perhaps something more speculative?

2. Contact nonprofit patient-advocacy and support organizations. These groups can help you determine whether your state has any coverage mandates and give you a sense of their treatment priorities. (Some groups are research-oriented and don't assist individuals.) You may be surprised at how conservative their approach is.

The TMJ Association, for example, suggests patients stick with therapies that are reversible and the least invasive, whenever possible, including pain medications and palliative treatments. The reason is that there are little data on what works for TMJ disorders.

Surgery and implants have caused some TMJ patients even worse pain and dysfunction over the years, Cowley said. "Coverage is extremely haphazard," she notes. "It boggles the mind to think (health plans) won't pay for a heating pad, but they will pay for a surgical procedure."

Applying hot and cold compresses to the jaw, the most common therapy, was deemed the most effective of 46 treatments, including splints, physical therapy and cortisone injections, according to a survey of 1,511 TMJ sufferers published last year in The Clinical Journal of Pain.

For severely autistic children, intensive treatment called applied behavior analysis is a standard of care, said Lorri Unumb, the Lexington, S.C.-based vice president of state government affairs for Autism Speaks, a nonprofit research and advocacy group. Even so, only 28 states require insurers to offer it. Families who don't benefit from such mandates sometimes find recourse through the group's efforts, she said. "We routinely help families petition their (human resources) department to try to get this benefit added."