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If you have a chronic disease or a history of illness and you want to change your job, holding on to the health insurance you have can be a big challenge. It wasn't supposed to be that way.
Eleven years ago this month, Congress passed a law intended to free people who felt trapped in their jobs because they were afraid of losing their health insurance.
NPR's Joanne Silberner looks at how that law fell short.
JOANNE SILBERNER: After President Clinton's health reform plan crashed and burned in 1994, politicians offered everything from a Canadian-style health care system to a free market free-for-all. Voters wanted something, but what?
Republican Senator Nancy Kassebaum and Democratic Senator Edward Kennedy asked their health aides, Dean Rosen and David Nixon, to come up with a plan. Dean Rosen, now a health policy analyst, describes what happened next.
Mr. DEAN ROSEN (Health Policy Analyst): What David and I did is to sit down and say, let's spread out all the bills that have been introduced in the last couple of years on health reform, and let's come up with a chart and figure out what are the common elements that folks agreed on.
SILBERNER: They decided that common ground was making sure that people who have, say, diabetes or a history of cancer could keep their health insurance. In 1997, President Clinton signed into law the Health Insurance Portability and Accountability Act, HIPAA.
Now if you have health insurance through your job and move to another company that offers insurance, your new firm has to give you the same deal it gives other workers. But there's a hitch. If the company you switched to doesn't offer health insurance or you go into business for yourself, well, you may be in trouble says Karen Pollitz. She's a research professor in health policy at Georgetown University.
Professor KAREN POLLITZ (Health Policy Institute, Georgetown University): There's just really not a guarantee that you're going to have comparable coverage at a comparable price.
SILBERNER: Price. That's one problem with HIPAA. The law guarantees that people who try to switch to individual insurance can buy it, but it didn't set a limit on the cost. And that's created a lot of stories like that of 60-year-old Anne Marie Andrews(ph). She and her husband clean buildings in Dayton, Ohio. In 2001, Andrews was diagnosed with a type of bone marrow cancer. She's been in remission and back at work for about five years.
Ms. ANNE MARIE ANDREWS: I feel pretty normal, really. I feel very blessed. I've been very lucky.
SILBERNER: That is as far as her health is concerned. When she and her husband started their own cleaning business a couple of years ago, a federal law allowed her to buy health insurance through her old company for 18 months, but only 18 months.
Ms. ANDREWS: I started shopping for insurance probably eight months before it expired.
SILBERNER: She found some policies. HIPAA guaranteed that, even with her history of cancer. The problem was cost. In Ohio, where Andrews live, insurers can charge individuals more if they have a history of illness. Even on her family's income of $60,000 a year, Andrews couldn't afford health insurance.
Ms. ANDREWS: The bottom line for me would have been approximately $1,000 a month is what it would have been with a large deductible. It would have been a very difficult for us to pay for that.
SILBERNER: There's a second problem with HIPAA, says Karen Pollitz of Georgetown University.
Prof. POLLITZ: I think HIPAA is kind of like "Alice in Wonderland." You know, when Alice goes down the rabbit hole and she sees this little tiny door that she needs to get through and she doesn't fit.
SILBERNER: Alice had to drink a potion to get through the little door. People who want to take advantage of HIPAA have to do what Andrews did: continue to buy insurance through their old employer for the first 18 months after they leave the job. But the premiums are expensive and most people aren't in the financial position to pay right after they left a job or been laid off.
Polls show the public is still anxious. According to the Kaiser Family Foundation, 31 percent of people with job-based health insurance are very or somewhat worried about losing health benefits if they switch jobs, even Georgetown professor Karen Pollitz who had cancer 11 years ago.
Prof. POLLITZ: Yeah, I have some old friends who I knew from, you know, my days on Capitol Hill years ago. We all had birthdays in the summer and we used to fantasize that we'd go off in our own and start a consulting group called the July Associates and, you know, just kind of do policy work on our own. But I can't do that. I can't do that here.
SILBERNER: She doesn't think she could get or afford health insurance that would let her see the same doctors who got her through her cancer.
Dean Rosen, one of the staffers on the original bill, says HIPAA worked well for what it was, a way for some people to hold on to health insurance. The next step is to make sure everyone can hang on to coverage they can afford. That, he says, will be a lot harder.
Joanne Silberner, NPR News, Washington.
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