Susan Getka left her job 18 months ago to care for her elderly father and mentally ill brother. Her sacrifice came at a cost: She was unable to buy health insurance from private insurers because she had a pre-existing condition, a heart valve disorder.
"Trying to get health care on my own, what a nightmare," said Getka, 56. "If you could have heard a recording of all my phone calls, you'd hear me begging for help."
Health care reform legislation winding through the House and Senate gives her new hope because it would prevent insurers from refusing to cover such pre-existing conditions. But there's a catch - that important provision would not take effect for years.
Little-noticed fine print in the legislation includes delays on many benefits of health reform. And those extended timelines will likely come as news to many who need and are expecting aid now, according to some of those monitoring the rancorous and evolving process.
A recent report from the nonpartisan Kaiser Family Foundation shows that about half of those surveyed believe that if reform passes, insurance market rules would change, financial aid would start and insurers would have to begin accepting customers with pre-existing conditions, all within the first year.
None of that would happen under the major bills being considered, though some changes would kick in immediately.
"The difficulty is these are pretty significant changes to the health care system, so they'll take time to initiate," said Jennifer Tolbert, a policy analyst at Kaiser who has studied the legislation. "At the same time, people with real needs may benefit from the more immediate help."
Parents, for example, could start covering their children past their 21st birthdays right away if the legislation takes effect, and insurers could not impose lifetime benefit limits.
But provisions aimed at vastly increasing coverage by expanding Medicaid and subsidizing insurance premiums would not begin for two to four years. A Senate proposal to expand access to Medicare might begin more immediately but also would not be subsidized right away.
Getka, who lives in Catonsville, had worked in a bookstore before quitting to care for her family members. That's when she looked for her own insurance and discovered that many carriers would not cover her. If legislation in Congress passes, the companies would still be able to deny coverage for people like her until 2013 under the House bill or 2014 under the Senate bill, according to Tolbert.
The House bill would immediately give people who have left their jobs the right to extend company insurance, known as COBRA, for years longer, but the Senate version does not contain that provision, Tolbert said.
Legislation also would establish a voluntary program right away to fund long-term care, which is the mostly nonmedical care that many seniors and disabled people such as Getka's brother and father need. But under both bills, participants would have to make contributions for five years before they could collect.
Both chambers' legislation also would immediately start to close the Medicare prescription drug "doughnut hole," which is the gap in benefits that costs seniors who spend a certain amount on medication.
Getka finally found insurance through a high-risk pool set up by the state of Maryland. That fund, similar to ones in 34 other states, may provide the backbone under reform legislation for immediate coverage of many more people with pre-existing conditions. But with subsidies not slated to kick in for the next few years, affordability would remain a problem for many people.
Getka said her plan is too expensive for her and she hopes to move to less expensive coverage next year. She bought it from the state because it was the only insurance available to her and she couldn't wait.
Jacki Schechner, spokeswoman for the advocacy group Health Care for America Now, said there are millions of people without insurance banking on health care reform. But there have been so many versions of the legislation that tracking the potential benefits is difficult. And there are sure to be more changes as the Senate debates its version. If it passes, it will have to be reconciled with the House bill.
With controversial topics such as abortion and "death panels" claiming much of the public debate, some other, less controversial measures are likely to have an easier time passing and becoming law right away, Schechner said. They include the insurance for older children, continuation under COBRA and the Medicare doughnut hole measure. They also include a ban on lifetime limits and an end to so-called recissions, in which insurers nullify a customer's policy when they file a claim for benefits.
"A lot of lawmakers have acknowledged the need for relief immediately," Schechner said. "There definitely will be some who will benefit from the provisions that take effect immediately. I don't know that anyone knows how many, though."