The New York Times - Awaiting Health Law's Prognosis | Friends of Cancer Research

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The New York Times - Awaiting Health Law's Prognosis

BY Reed Abelson

With a court decision on Monday declaring the health care law unconstitutional and Republicans intent on repealing at least parts of it, thousands of Americans

 with major illnesses are facing the renewed prospect of losing their health insurance coverage.

The legislation put an end to lifetime limits on coverage for the first time, erasing the financial burdens, including personal bankruptcy, that had affected many ailing Americans.

For example, Hillary St. Pierre, a 28-year-old former registered nurse who has Hodgkin’s lymphoma, had expected to reach her insurance plan’s $2 million limit this year. Under the new law, the cap was eliminated when the policy she gets through her husband’s employer was renewed this year.

Ms. St. Pierre, who has already come close once before to losing her coverage because she had reached the plan’s maximum, says she does not know what she will do if the cap is reinstated. “I will be forced to stop treatment or to alter my treatment,” Ms. St. Pierre, who lives in Charlestown, N.H., with her husband and son, said in an e-mail. “I will find a way to continue and survive, but who is going to pay?”

As judges and lawmakers debate the fate of the new health care law, patients like Ms. St. Pierre or Alex Ell, a 22-year-old with hemophilia who lives in Portland, Ore., fear losing one of the law’s key protections. Like Ms. St. Pierre, Mr. Ell expected to reach the limits of his coverage this year if the law had not passed. In 2010, the bill for the clotting factor medicine he needs was $800,000, and his policy has a $1.5 million cap. “It is a close call,” he said.

Exactly what will happen to the law’s specific provisions that prevent insurers from imposing lifetime limits and require them to phase out the annual limits now in place is unclear. While even Republicans concede that a full repeal is unlikely, Congress could strip certain elements of the legislation, like this one. As challenges to the law move through the courts, patients who have felt an immediate impact now confront added uncertainty.

“We’ve got to protect people from catastrophic health problems,” said Ron Pollack, the executive director of Families USA, a consumer advocacy group that favored the law’s passage. “We don’t want people bankrupted.”

Protecting people from facing these extremes is one of the main goals of the law, according to its proponents.

Asked about the effect of the law on those who had encountered an insurance ceiling, Kathleen Sebelius, the health secretary, said in a statement: “The Affordable Care Act is freeing Americans from worrying about having their insurance benefits run out when they need them the most.”

Before the law was passed, an estimated 20,000 insured Americans reached the lifetime limits of their coverage each year. Decades old, these restrictions were put in place when both medical care and health insurance were much less expensive than they are today, said Tom Wildsmith, an official with the American Academy of Actuaries.

In recent years, many employers, if they still had caps, set them fairly high, so that it was rare for someone to exceed the benefits unless they were seriously ill and required expensive care.

“This is the kind of thing that grabs a cancer survivor who has had several operations,” said Gary Claxton, an executive with the Kaiser Family Foundation, which studies employer coverage. Only the very sick were affected. “People don’t voluntarily use this level of services,” he said.

Ms. St. Pierre nearly lost her insurance in 2008. After her first bone marrow transplant failed, she realized the coverage from her husband’s employer would run out before she could receive another transplant.

She remembers reviewing her options and looking into treatments that would be less expensive. She enrolled in a clinical trial to test an unproved form of chemotherapy, for example, because it was free. She considered divorcing her husband, a move that could qualify her for Medicaid, or moving to Massachusetts, where she thought she might be able to afford and qualify for a policy. She has written about her experiences on her blog, called BaldiesBlog.

But she was spared from making those decisions when her husband’s company was acquired, and she was able to enroll in a new health plan. “Luckily, the cap started over,” she said.

Ms. St. Pierre also now qualifies for Medicare, the federal health insurance program, because she is disabled, but her husband’s plan remains her primary source of insurance. Medicare would still leave her with significant medical bills if she lost her husband’s coverage because she has no supplemental insurance.

Without the lifetime cap, Ms. St. Pierre says she can now focus on what treatment makes the most sense rather than gamble that the most aggressive care will cure her and allow her to escape the maximum limits on coverage. “It opens up all sorts of options,” she said, including viewing her cancer as a chronic condition that she can afford to treat for many years.

Cancer patients like Ms. St. Pierre who are concerned about running out of coverage often try to tailor their treatments to see if they can avoid hitting their lifetime caps, said Stephen Finan, senior director of policy at the American Cancer Society. “People have to think about what’s their strategy,” he said.

And while Ms. St. Pierre, who has worked with the cancer society, says she knows she is likely to be able to continue to receive some treatment without insurance, she also knows that it is not likely to be the optimal care. The same is true for any patient who runs out of coverage, Mr. Finan said. “You may well continue to get care, but the quality of care is markedly lower,” he said.

The last time Mr. Ell neared the maximum on his parents’ policies, he had only $77,000 in remaining coverage — about a month’s worth of his clotting medicine. He had been able to switch plans offered by his parents’ employers. He works part time and is not eligible for insurance from his employer.

Among employers, the feelings are mixed about whether the limits should be eliminated, said Andrew Webber, who is the president of the National Business Coalition on Health. One of the coalition’s members, the Midwest Business Group on Health, recently conducted a survey of opinions by employers. About a quarter of those surveyed wanted to repeal the new law’s ban on lifetime and annual limits to coverage. While about half wanted to keep the provisions, some employers object on the grounds that they do not want the government to dictate what benefits they offer their workers. “Employers, for so many years, have had so much flexibility to design and change their policies from year to year,” Mr. Webber said, and the new law changes that.

The expense of doing away with lifetime limits is fairly modest, said Mr. Wildsmith, the actuary. If a plan currently has a $1 million limit, eliminating it would add only 1 percent to the cost of the premium, he said. Many employers have much higher caps, making it even less expensive to eliminate them.

While proponents of the law favor the elimination of the caps, some Republicans also think health coverage should no longer be subject to caps on a yearly or annual basis. The plan being proposed by the House Republicans “banned annual and lifetime limits and lowered premiums for millions of people,” said a spokeswoman for the House Ways and Means Committee.

Ms. St. Pierre says she knows she will want to continue her treatment, regardless of whether she has private coverage, but she also knows that someone will have to pay the bill. “Where the problem lies is who is going to pay for that,” she said. “Will they take my house or car?”