An East Aurora woman spent months trying to persuade her HMO that a delicate, physician-ordered electronic monitor designed to keep her son alive was different from a crutch.
Like thousands of others forced to haggle over coverage with health maintenance organizations, Janet Stanek lived for months in bureaucratic deadlock, then got turned down by the plan.
Her son Bailey has a condition called sleep apnea. Without warning, he would stop breathing. His eyes would roll back and his complexion would turn blue.
His doctor prescribed a monitor that would alert the Staneks with a shrill beeping when he stopped breathing.
Stanek said the locally owned health plan ruled the doctor-prescribed machine was instead a "durable medical device" -- like a cane, walker or crutch -- and refused to pay because the employers' plan unwittingly did not cover such devices.
"I went through every step of the appeals process," Stanek said. "I wrote two letters to the insurance company. The doctors wrote at least two letters. I went before their (HMO appeals) board. They were very polite and very professional, and they said 'no.' "
Stanek had to pay about $1,000 a month out of pocket to lease the lifesaving equipment she and her employer thought was covered by the plan.
The U.S. Senate is now debating a reform bill that would require Stanek's appeal to be heard by an independent review board, not one picked by her insurance company.
But a massive political deadlock now threatens this new effort to pass a patients' bill of rights. As a bipartisan reform bill gained steam in the Democratic-controlled Senate last week, President Bush threatened to veto the legislation.
Only time will tell whether the clash will lead to new laws or a pivotal issue in next year's congres-sional elections. With maverick Republican Sen. John McCain of Arizona on their side, Democrats think they can't lose either way.
Sen. Hillary Rodham Clinton, D-N.Y., on Thursday inaugurated a van carrying a big tote board that purports to count the number of Americans who are denied help by their HMOs every second, about 34.
Sen. Charles E. Schumer, D-N.Y., was to be in Buffalo today to discuss a report showing that New Yorkers' grievances against HMOs outnumber their complaints on all other consumer issues.
Schumer and Clinton both support legislation sponsored by McCain and Sen. Edward M. Kennedy, D-Mass., mandating external review of HMO actions, and giving patients an unlimited right to sue their plans.
It also establishes a federal standard on grievance procedures, overriding weaker state laws. The bill also bars health plans from rewarding doctors who deny their patients medical care.
Democrats in the House, such as Rep. John J. LaFalce of the Town of Tonawanda, are lined up behind a tough patients' bill of rights. But most Republicans say they are still studying the issue, and hope for a compromise.
Bush and his allies in Congress say the McCain-Kennedy bill would trigger new lawsuits whose verdicts would drive up insurance costs. The health insurance industry claims the bill's new costs would force small businesses to cancel health insurance coverage, increasing the number of uninsured.
But the immediate past president of the American Medical Association, Dr. Thomas Reardon, calls the GOP's allegations "big lies that are being advanced by the insurance industry."
Reardon said the bipartisan Congressional Budget Office estimates that the lawsuits and added claims against insurers would increase premiums about eight-tenths of 1 percent a year.
"Last year, without a patients' bill of rights to blame," Reardon said, "insurers raised premiums 8.3 percent -- that's 10 times what it would cost for the liability provisions in the McCain bill."
After Bush announced he would block the McCain-Kennedy bill, Democrats appeared to intensify their interest in it. Clinton on Friday persuaded McCain to amend his bill to mandate coverage for the routine costs of patients in clinical trials at cancer centers such as Roswell Park Cancer Institute in Buffalo and Memorial Sloan-Kettering in New York. She also asked that coverage be extended to centers receiving support grants from the National Institutes of Health.
Clinton apparently sees the fight over patients' rights as an extension of her dashed hopes for a universal health care plan.
"When we began our work in 1993," she said in another speech last week, "there were approximately 33 million Americans without insurance.
"Today we are up to 42 million, and this is after the so-called managed-care revolution, where people have been finding it harder to afford coverage, afford the deductibles, (and) afford the copayments."
The McCain-Kennedy bill has a formidable ally that Clinton did not have eight years ago: the American Medical Association. In the early 1990s, two-thirds of the AMA's political contributions went to Republicans who opposed Clinton's health care bill.
Currently, about half of the AMA money is going to Democrats who back tough HMO reform measures. The association has given $15 million to federal candidates since 1990.
The legislative watchdog group Common Cause reported that the trial lawyers, who back the Democrats and want unlimited rights to sue built into the law, made $15 million in political contributions in the last two years.
On the other side, HMO interests have given $2 million to national parties since 1999, Common Cause said.
With Senate Majority Leader Tom Daschle, D-S.D., calling for passage by this weekend and Bush threatening a veto, many House Republicans are caught in the middle.
Few are more on the spot than moderate Jack Quinn, R-Hamburg. Quinn supported a strong reform bill in the last Congress, but has not signed on to this year's measure sponsored by Democrat John Dingell of Michigan, and Republican Greg Ganske of Iowa, a physician who specializes in reconstructive surgery on children.
Holding a large colored picture of an infant with a cleft palette and a harelip, Ganske angrily told a crowd last week that HMOs routinely reject coverage for corrective surgery on such children as "medically unnecessary."
Dingell and McCain are strongly backed by key unions in Quinn's urban district, the United Auto Workers and the American Federation of State County and Municipal Employees.
Quinn spokesman Mike Tetuan said Quinn is reluctant to oppose Bush but will listen carefully to what labor and other interests in his district want him to do.
Meanwhile, Mike Brady, a spokesman for Rep. Thomas M. Reynolds, R-Clarence, said that Reynolds is weighing various bills. Two of the elements Reynolds wants in a reform bill, Brady said, are assurances that patients will have an independent appeals process and that physicians will make decisions on patients' care.
Rep. Amo Houghton, R-Corning, a key member of the House Ways and Means Committee, is working with panel chairman Bill Thomas, R-Calif., on a compromise bill. It contains many features of the Dingell-Ganske bill, such as access to state courts for redress and independent external review.
The Republican compromise bill would satisfy some of Bush's concerns by capping damages in lawsuits against HMOs and barring punitive damages. In addition, the bill that Houghton likes provides for tax breaks for those creating individual medical savings accounts. However, the Senate has voted against the accounts.