Painful Side Effects Emotional strains, questions about insurance arise


June 20, 1993|By Liz Bowie | Liz Bowie,Staff Writer

By the end of this decade, gene doctors promise to offer a kind of voyage into the future.

Their "time machine" will be blood tests that will screen you for dozens of genes and provide a statistical peek at your health. Want to know the probability of getting certain diseases, from Alzheimer's to colon cancer to alcoholism? They will tell you.

Scientists have touted such genetic information as a powerful tool. Armed with such knowledge, you could change your eating habits to reduce the risk of getting cancer or heart disease. Or you could begin regular checkups that might lead to an early diagnosis of life-threatening illnesses.

But that information might also carry troublesome side effects. Insurers might deny you health, life or disability coverage because of genetic tests. That's already happening in some isolated cases; the trend could accelerate as such tests become more common.

And some people might have emotional problems from learning they have untreatable, fatal diseases. Such problems could even cause a backlash against genetic testing. At Johns Hopkins Hospital, for example, many people prone to Huntington's disease -- a fatal, untreatable disorder of the nervous system that strikes during middle age -- are forgoing a test the hospital offers.

Consider the case of Victoria Allene Reis, a 40-year-old Californian who has had trouble getting health insurance ever since she took a genetic test for cystic fibrosis in 1989.

Results of the test -- which she took on the advice of an emergency room doctor -- were inconclusive. And she isn't being treated for the fatal lung disease, although she does have bouts with bronchial infections, said Mrs. Reis and a doctor who verified her account.

But health insurers have denied her coverage six times, she says.

The one company that agreed to insure her -- for $300 a month -- has excluded lung ailments from the policy. "If I had known it would have meant I wouldn't get insurance, I would not have had the test," she said.

The impact on her life has been profound. Without full health insurance coverage, she fears that she could incur huge medical bills, wiping out her family financially.

So she and her husband have put everything they own in the names of their children. "We don't have anything. I am not going to lose a home I worked 25 years for," said Mrs. Reis, a foster mother for handicapped children.

Although her story is not common, cases of discrimination based on genetic testing are likely to increase with the explosion of medical research expected in the next five to 10 years. As scientists decipher the body's complex genetic code, a new gene is discovered nearly every month.

Congress and several states, including Maryland, have considered laws to limit or prohibit insurers' access to information about genetic testing. Wisconsin and Arizona have passed such laws; Maryland's General Assembly decided this year to defer action until proposals are studied over the summer.

A recent report by a National Institutes of Health task force recommends a moratorium on the use of results of genetic testing by health insurers. It recommends that health care reforms prohibit denying anyone basic health coverage because of results of a genetic test. In addition, it says a person shouldn't be required to take a test or to give an insurer the results before getting insurance.

Health care reform is likely to solve the problem, many doctors and geneticists believe, if a basic level of care is offered to everyone, including those with pre-existing conditions. But other doctors say that if health insurers have any access to such information, they will use it to discriminate.

The issue of disability and life insurance appears to be more complex. Many people say everyone has the right to receive proper health care, but should society give everyone access to disability and life insurance?

"You can't allow people to go to a [life] insurance company and say, 'Give me a $5 million policy and you aren't allowed to test me for what I know I have,' " said Robert Hunter, president of the National Insurance Consumer Organization. "If you give one side a peek at everyone's cards and then let everyone bet, you won't have a fair bet anymore."

Theresa Morelli, a 30-year-old Ohio lawyer, applied for disability insurance after law school. She was denied insurance after the company read a note scrawled across the medical records in her doctor's office. That note said her father had died of Huntington's disease, which gave her a 50 percent chance of inheriting the gene -- and the disease.

Ms. Morelli, who lives in Steubenville, has refused to have the genetic test for the disease. She doesn't want to know the result -- and believes she risks losing health insurance if she takes the test.

"I have already been branded uninsurable by a disease my father allegedly had. . . . I feel I can't risk it. A person needs health insurance," she said.

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