National Nurses United

GINA:1 RH Opener 2/28/09 12:44 AM Page 17 "Several [insurers] said they wouldn't take the person with genetic test results. Others said they'd offer coverage but charge more, or permanently exclude from coverage the condition for which they were genetically predisposed. So we documented that it could happen." —KAREN POLLITZ, DIRECTOR OF TH E H E ALTH POLICY INSTITUTE AT GEORGETOWN UNIVERSIT Y. cannot know genetic information about people they cover or employ, except in rare instances when employers use genetic tests to ensure that their employees aren't being exposed to unsafe chemicals at work. "It becomes quite a promising model because Congress has now in one law been quite thorough," said Pollitz. "It says you just can't discriminate at all. So many federal reforms—HIPAA being a prime example—outlawed some discrimination but left some alone. This one is an important precedent." Then she added, "It's important to really get the regulation right everywhere. Otherwise, there will be lingering concerns on the part of people that maybe it won't protect them completely." But there's a problem—or there may be. Remember, GINA bounced around the halls of Congress for 13 years. Desperate to pass it, supporters finally agreed to some considerable watering down of the law, said Michael Watson, a geneticist and executive director at the American College of Medical Genetics, a trade and professional group for geneticists. "When GINA started, there was a world more enforcement in the bill," he said. "Over the past eight years, there's been a constant reduction in enforcement [provisions]. When it was up for a vote this last round, it was getting serious and those involved recommended that we accept some reductions in enforcement to get enough Congress members to sign on." The biggest reduction in enforcement came in the legal arena: The right to sue is gone. Under versions of the law proposed in 2003, state attorneys general and individuals had the right to sue if one lost his job or health insurance, or if his health insurance premium increased, due to disclosure of genetic information. In the version proposed by Rep. Tom Daschle, there was no limit to how high the reward could be. The new law strips that right and replaces it with a series of penalties, to be enforced by the federal Equal Employment Opportunity Commission, the Department of Health and Human Services, Department of Labor, and Department of the Treasury: $100 per day per patient when an insurer or employer doesn't comply with the law; between $2,500 and $15,000 yearly for each violation. But the law also provides several limitations to soften the bite of regulation, including forgiving discrimination when it's corrected within 30 days of first occurrence, and forgiving violations that are corrected before the date on which the insurer receives a violation notice from regulators. The law also limits the overall amount of penalties an insurer can be charged if the violations of the law were JANUARY | FEBRUARY 2009 unintentional to 10 percent of its taxable income during the previous tax year or $500,000. "We made the penalties much less draconian," said Rep. Judy Biggert, one of the Republicans who cosponsored the bill. "We wanted to make sure they [insurers and employers] followed the law but we weren't going to make a nightmare out of it." What will enforcement look like once it's put into place? No one knows, said Pollitz, who recalls seeing draft language of changes to the law that would have "gutted it." Regulators at the applicable agencies are writing the regulations now. "Between passage and implementation is interpretation," she said. The Bush administration has been notoriously lax in regulating insurers and other industries. Take, for example, HIPAA. When it passed in 1996, the Department of Health and Human Services created the Health Care Financing Administration and the Office of Private Health Insurance. The Clinton administration hired state insurance regulators to run the office, and created a structure in which regulators could ensure that the law was being implemented equally in all 50 states. The regulators regularly traveled across the country, answering questions and assuring that people were protected from discrimination. "And then Clinton left town and Bush came in and it's just gone," Pollitz said of HCFA. "There's not an office of private insurance anymore. Someone might have that title, but they don't do anything. A lot of the state regulators quit and left. A lot of the people in the federal government got reassigned to work on Medicare Part D or whatever else. It's been pretty thoroughly dismantled." The office has been so dismantled, in fact, that when Pollitz attended a meeting of state insurance regulators recently and mentioned the passage of GINA, state regulators "had no idea" what she was talking about. Likewise, when HIPAA first passed, three states—California and two small states—refused to implement it. The federal HCFA was able to step in and force enforcement in the two smaller states. But with the large size of California, the federal government wasn't able to enforce it. "People in California didn't have HIPAA rights for the first two years," Pollitz said. "With GINA again, it raises the question of what happens when someone is in trouble? Even though Congress says you have these rights, that you have these protections, if there's no enforcement, you have nothing." I Heather Boerner is a health and medical writer based in San Francisco. W W W. C A L N U R S E S . O R G REGISTERED NURSE 17

• Cover