Legislation seeks full protection for those with breast-cancer gene

WASHINGTON, March 16 (JTA) — Sharon has always feared developing breast cancer. The disease has already struck her mother, an aunt and a cousin, as well as three great aunts, who died from it. “Knowing my family history, I’ve come to believe that I could have inherited the gene that causes breast cancer,” says Sharon, a Jewish mother of two in her mid-30s. But she refuses to be tested — or reveal her full identity — “because of the risks that I believe exist for me and my immediate family if genetic information about myself were to become public knowledge.” Simply put, she fears losing her health care. With the advent of testing for breast-cancer genes, health insurance companies have begun to deny coverage to — or impose higher premiums on — women who test positive for a mutated gene that can cause breast cancer. Angered by what they point to as evidence of genetic discrimination, health-care advocates for women are now leading a charge to ban the practice. “No American should have to worry that their genes — which they did not choose, and over which they have no control — will be used against them,” said Rep. Louise Slaughter (D-N.Y.), who has introduced legislation in the House known as the Genetic Information Nondiscrimination Act. Some Jewish groups, including Hadassah and the American Jewish Congress’ Commission on Women’s Equality, have been at the forefront of the effort for such legislation. In addition to their concern with issues relating to women’s health care in general, breast cancer strikes a particularly scary note. Sharon is not alone. Other Jewish women believe that they have a heightened risk of developing the disease. Last year, researchers identified two cancer-causing genes found to occur with higher frequency in women of Ashkenazi descent. The mutations, in genes known as BRCA1 and BRCA2, affect as many as one in 50 Jewish women of Eastern European descent. One of the researchers involved in the study of cancer-causing genes, Dr. Mary-Claire King, is launching a major study this month to further last year’s findings. The four-year study will include 1,000 Jewish women in the New York area. Ashkenazi women thus have a distinct and potentially heightened hereditary susceptibility to breast and ovarian cancers. Some studies indicate that those carrying the genes have a 90 percent chance of developing cancer. Jewish women in general, however, are only slightly more at risk of developing breast cancer than the general population. After last year’s discovery, many Jewish women rushed to get tested, unaware of potential pitfalls. “It quickly became clear that if women either got a genetic test or participated in a research study, there was no sure way to protect them against insurance or employment discrimination based on genetic information,” said Judith Palkovitz, national vice president of Hadassah. Those who test positive for the genes face the prospect of health insurers raising their rates or denying coverage, or employers refusing to hire or promote them. All this has given rise to fear in the Jewish community that some Jewish women could become part of an insurance underclass. “I honestly believe that women dread getting breast cancer more than almost any other disease,” Palkovitz said. “Imagine then, the additional burden on women if there exists the possibility that they will be unable to obtain health insurance to actually treat the problem, solely because they sought more information.” Slaughter’s bill would prohibit insurance providers from denying, canceling or varying the terms of coverage on the basis of genetic information. It would also prohibit providers from requiring an individual to disclose genetic tests, or releasing genetic information without prior written consent. A companion bill, sponsored by Sen. Olympia Snowe (R-Maine), has been introduced in the Senate. The proposed measure follows health insurance legislation signed into law last year that made some initial strides in addressing the issue. That bill, known as the Kennedy-Kassebaum health reform bill, includes genetic information under its definition of a pre-existing condition, and prohibits insurers from discriminating on that basis. But the reform measure, which goes into effect July 1, limits protections to those covered under group medical plans, provided that they meet certain criteria. Twenty states have passed laws preventing health insurers from charging people more if they are found to have a genetic mutation. The state laws, however, only affect state-regulated insurance companies. This does not include large multistate employers that are regulated by the federal government. The proposed legislation aims to make the protections universal. Richard Coorsh, a spokesman for the Health Insurance Association of America, believes that fears of discrimination are overblown. Most Americans, he points out, are insured under group plans and would retain coverage regardless of any pre-existing genetic condition. Those who must seek coverage as individuals, however, may be faced with higher premiums if they are found to have a cancer-causing gene, Coorsh said. Health insurers have little choice because “that’s what the industry is all about, assessing risk.” Meanwhile, women’s health-care advocates, including the Leadership Conference of National Jewish Women’s Organizations — an umbrella for several major groups — are gearing up for a concerted push to pass the legislation this year. So far, the measure has gained 77 co-sponsors in the House, while the Senate version has yet to attract supporters. Proponents of the bill, meanwhile, stress that genetic discrimination is not only a women’s health issue. The Human Genome Project has already identified genes for cystic fibrosis, Huntington’s disease, prostate cancer, multiple sclerosis and other diseases. People found to be carrying those genes, proponents say, are equally vulnerable to genetic discrimination. “As scientists race to map the whole human genome, and as they find genetic `markers’ for many diseases, this issue stands to affect each and every one of us — men and women alike, regardless of ethnic heritage,” Palkovitz said.