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Health Insurance Issues
for persons with Tourette Syndrome

by Mitzi Waltz

Here’s a nightmare scenario: you’ve just signed up with a brand-new health insurance plan, and you find out that Tourette Syndrome isn’t covered, or that your medications will now cost you hundreds of dollars every month.

Unfortunately, this nightmare is a reality for thousands of people with TS. Whether it’s ruled out as a pre-existing condition or just plain ruled out in general, problems with insurance companies are rife.

First, the bad news: it’s legal for insurance companies in most states (but not all) to refuse to cover pre-existing conditions; to refuse to cover neurological conditions, psychiatric conditions, or both (TS can be placed in either category) at all; to force you to use specific providers who may not know much about TS; or to refuse to sell you health insurance at all.

Now, the good news: some states offer consumers more protection—insisting that plans cover neurological conditions, for example; and there are often ways to get around some of the other problems.

If the company you or your spouse works for offers insurance, take it. Company plans spread the risk, and that almost always means more coverage for less money. If there’s a medical questionnaire for new signers, answer it honestly, but also find out how the company defines and deals with pre-existing conditions. Most will only leave your pre-existing condition uncovered for a fairly short amount of time, like three to six months. Others will rule out care for up to a year.

If you’re given a choice between two or more insurance plans, the PRE-EXISTING CONDITIONS ISSUE  is one to make a comparison on.

Here are five more criteria for your decision:

  1. Does the plan list TS as a neurological condition, or a psychiatric condition? This determines where you get your care.

  2. What’s the monthly cost for you (and any dependents)?
  3. How big are the deductibles and co-pays for care?

  4. What kind of medication coverage does the plan have? You’ll need to know whether or not the medication(s) you take now are covered, and the size of any co-pays for medication.

  5. Which plan has the best local TS experts on its list of providers?

The first question is more important than you might think. If the plan uses an outside psychiatric-care provider, that can be a problem. Also, some plans cover less of the cost of medications prescribed by a psychiatrist, but would pay 80 percent or more of the cost if the same prescription was written by a neurologist.

For employer-provided insurance, the answers to these questions should be in the Summary Plan Description, available from your Personnel office. If not, call the company directly or check its Web site. Most major health insurers keep preferred provider lists online, for example, so you can search for familiar names.

If you’re buying insurance directly, ask any plan you’re considering for a complete contract, and take a look online to see if customers with TS have reported problems. Online lists for people with TS are a good place to ask insurance questions, but in a pinch, just pop “Tourette Syndrome” and your possible insurer’s name into Google and see what turns up!

You may find a better deal on price with a plan that’s available through a group, such as a trade union or club that you’re a member of.

And be careful… scams are out there, including companies that will happily take your “cheap” premiums but provide no coverage at all when you actually need to see a doctor. Contact your state insurance commission before you buy (find contact information at Make sure the company is licensed, and ask whether complaints have been filed.

If you apply for a health insurance policy but are not accepted due to a pre-existing condition, this is also a job for your state insurance commission. They can tell you whether the company was within its rights to refuse you, and point you towards alternatives if it was. Some states run their own group plans for people who have been refused coverage. Also, some people with TS may be eligible for special state and federal plans for people with disabilities.

Whatever you do, don’t allow your coverage to lapse. Not only will you be running a huge risk, but uninsured people pay higher premiums when they buy a new policy. If you’re leaving a job, a COBRA plan can help you maintain your coverage until you find a new provider, or a new job.

NOTE: The Tourette Association offers a comprehensive booklet, Health Insurance: Issues and Solutions for People With Tourette Syndrome, that goes into much greater detail on getting insurance and dealing with insurance companies and HMOs. (the Tourette Association publication #LA-209; to visit the Tourette Association’s online store, click here).

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