UCSF breast cancer specialist Laura Esserman, who leads one of the Bay Area’s first programs to screen patients for genes that are linked to inherited breast cancer, praises an effort by President Clinton to block insurers from denying people coverage because of their family histories or the results of genetic tests.

Esserman, who is conducting a study in which patients are given counseling and testing for the BRCA1 and BRCA2 genes linked to inherited breast and ovarian cancer, said "it is crucial that the government step in" to make sure patients are not discriminated against for taking genetic tests that may determine a predisposition to cancer.

The government currently forbids insurers to use genetic information to deny or limit coverage to people in group plans. On Monday, Clinton endorsed bills, opposed by insurance companies, and called on Congress to extend that protection to people who buy their own insurance. The measures, in both houses of Congress, would also prevent insurers from setting premiums based on genetic information.

"The bottom line is that if we were to use genetic testing to improve treatment of breast cancer and develop true prevention, this cannot be used to 'risk-adjust' by insurance companies to penalize people," Esserman said.

Genetic testing is still in its infancy, Esserman noted, and more research needs to be conducted to determine how it is to be used. Testing positive for the BRCA1 or BRCA2 gene doesn't necessarily mean a patient is guaranteed to develop cancer -- only that the person may have a higher risk, she said.

"Insurance companies should not hold an individual liable. If they are allowed to discriminate, we will never be able to do the research to help us take advantage of the wonderful advances in technology," Esserman said. “There is so much potential here, but not if it is misused.”

Nearly 25 patients have undergone genetic testing since the UCSF Cancer Center program began in January. More than 300 people have called to inquire about the program, with many of them receiving genetic counseling. Men who want to know their carrier status also may be eligible for the test. Participation in the program is strictly confidential. Patients who are shown to have a copy of the genes are more closely screened for ovarian and breast cancer to provide earlier treatment. Treatment options may include preventive surgeries, as well as dietary changes, intervention with MRIs and entry into clinical trials.

Although it is illegal in California for insurance companies to consider pre-cancerous susceptibility as a pre-existing condition for medical insurance, worry remains, and protection against discrimination is not always completely effective, according to legal experts.

The Health Insurance Association of America supported the legislation that bans discrimination based on genetic information, but it said this week that extending the protection to insurance to individuals could cause people to drop their coverage. Insurers may raise rates in the individual market to protect against higher costs of treating those with a genetic predisposition, industry representatives cautioned.

"That's complete nonsense and we should not let insurance companies get away with that," Esserman said. "If we really want to promote our understanding of genetic testing, we will really penalize insurance companies that try that."

Patients who want more information about the genetic testing offered at the UCSF Cancer Center should call (415)885-7779.

by Dale Martin

1st appeared 7/16/97