Patients Rights DOA

A bill favored by insurance companies and managed care providers wins in the Senate.

Published July 16, 1999 7:00PM (EDT)

Ann Casey came to Washington to be a poster child for Republican health-care reform. She left feeling used, discouraged and disgusted after watching the Senate pass a diluted Patients Bill of Rights that was headed nowhere with the full support of its sponsors.

An outgoing woman in her late 40s, Casey owns a Parcel Plus business outside Baltimore with her husband Dave and is plagued by medical debts. Her sons were in car and bike accidents several years ago and she's still paying off their hospital bills. Dave got colon cancer last year and is still paying his bills. They pay $300 a month with a $1500 deductible for their insurance. So, when a trade group invited Casey to speak in Congress for holding down health-care costs, she said sure.

At a GOP news conference, she and two other small-business owners declared that increased premiums could sink their livelihoods. Senator Don Nickles, R-Okla., the slick floor leader in the health-care debate, put their remarks in perspective. "We're protecting the unprotected," he said. "These people are saying, 'Don't make it more expensive to stay in business.' They're saying, 'Government knows best is a bad idea.'"

By the time the conference ended, though, Casey was having second thoughts, and by the time the Senate passed a Republican bill, she was heartsick. "I guess I thought I was testifying about how important it was to keep insurance costs down, not to be a mouthpiece saying, 'Theirs is bad and ours is good,'" she said. What she really wanted went beyond what either party offered. "I think there should be affordable care for everyone. When I was growing up my father was in the military and we got great care. I guess that was socialism, but it was medicine."

This week Congress seriously discussed managed care for the first time in the decade since HMOs began metastasizing across the U.S. landscape. The Democrats, led by Minority Leader Tom Daschle of South Dakota and Edward Kennedy of Massachusetts, used a procedural tactic to force the Republicans to hold a debate on their proposals for reining in the worst abuses of managed care. It looked like savvy politics, and maybe something nobler, given how much fear and loathing health care inspires in Americans. But none of it got the country closer to what Casey and what most other Americans say they want.

The Patients Bill of Rights that Kennedy brought to the Senate was intended to reassert the primacy of the patient-doctor relationship. It guaranteed patients the right to see specialists and get the treatments their doctors order, to keep their doctors when their companies change health plans, to see an OB/Gyn or rush to an emergency room without getting permission from an HMO, and to sue, if necessary, when a health plan's refusal of coverage has led to injury or death.

The Republicans brought forth a dim reflection of the Democratic version and called it Patients Rights Plus -- the plus being various tax incentives. The GOP measure applied to the 48 million Americans covered by self-insured plans, which typically are offered by large corporations, and left in the hands of state legislators the reform of plans covering an additional 112 million Americans. The GOP spin was that their bill would be cheaper to implement, and thus prevent premiums from skyrocketing and companies from dumping coverage. The GOP said that liability would jack up prices and bring nasty lawyers swaggering into the pristine world of medicine. "You can't sue your way to good health," said Vermont Republican Senator Jim Jeffords.

Kennedy, red-faced and ornery, chuffed and shouted his way through the week. "The current GOP bill is a sham, a step back," he said. "It gives a false sense of security, it isn't worth the paper it's printed on."

Scores of patient-advocate and medical-professional groups -- nearly everyone in health care except those who control it --backed Kennedy's bill. The health-insurance and business lobbies supported the Republican bill. The insurance industry is said to have spent $100 million lobbying against managed-care reform in the past several months -- a modest slice of the $1.5 billion in profits reported by the five largest health insurers last year.

The layout of the reception room between the Senate floor and Vice President Gore's office provided an irresistible metaphor. Lobbyists glued to their cell phones paced inside the room's tiled corners behind red velvet ropes. The patient advocates, mostly women, held the dark interior wall. On the other side of the room, by the windows, legions of insurance lobbyists were camped at one end of a long table. At the other end, AMA lobbyists sat alone in a reflection of the tattered aloofness of doctors.

Outside in the Senate swamp (a patch of lawn under a big elm tree), pediatricians, ER doctors, student nurses and the like gathered with Kennedy at afternoon rallies. Justin Dart Jr., a polio-stricken Republican businessman, wheelchaired to a microphone in the 90-degree heat Thursday and likened managed care to a battle with death. "I've been sick for the past 18 months and I've had to fight for my rights as a consumer, for my right to live, every step of the way," he told 200 fired-up activists. "I'm willing to die for my country, but not for my insurance company."

The GOP, lacking organized patient support, faced more of a conundrum about how to handle its sound bites but decided to go with "hurtin' small-businessfolk who can't afford the higher premiums these tax-and-spend-liberals will give us." That's where Casey came in.

You had to admire the Republican moxie. The party that used universal health reform as a club to beat down the Clintons and then raked in HMO contributions while a million Americans each year -- mostly children -- lost their health insurance now claimed to be championing patient rights.

"Their bill is Step 1 toward government running the health care system, so when my mama needs to go see a doctor, she first has to talk to a government bureaucrat," said Senator Phil Gramm, R-Texas. "Our answer is, expand freedom and choice within the current system, empower families to decide."

The empowerment Gramm referred to was the expansion of medical savings accounts, tax-free funds that can be invested in health care or cashed in at the individual's discretion. Essentially they are a way for healthy people to opt out of insurance pools, which certainly improves that group's freedom but also increases the costs for everyone else.

Republican Senator John Chafee of Rhode Island, who voted with the Democrats throughout most of the debate, led a small bipartisan group that tried to post a compromise bill, but neither party would give him a slot to introduce it. Daschle was leery of the watered-down liability clause in the Chafee bill. Senator Trent Lott, R-Miss., gave no explanations, but imposed party discipline. "We've let the American people down," Chafee said sadly.

The bill that passed, 53-47, with Chafee and Republican Peter Fitzgerald of Illinois voting with the Democrats, was mostly the same one the GOP started with. It was not entirely bereft of substance. True, the highlighted abuses that it promised to end -- drive-through mastectomies, gag rules prohibiting doctors from discussing expensive options with patients, refused referrals for cancer patients -- are largely red herrings, since managed care has learned to shy from such viscerally unpopular measures already. But the bill promised patients the right to appeal refused services, contained a section prohibiting discrimination based on genetic diagnostics and offered better access to OB/Gyns for women and to emergency rooms for everyone. (Many plans routinely refuse payment for emergency room visits. In 1996, the state of Oregon fined a company called PacifiCare $20,000 after noting that in two years, the company initially denied nearly 5,000 claims based only on billing statements from the ERs.)

These are reasonable protections, but they are incremental. The Republicans shied from challenging the central power of managed care, which lies in the inherent structure of the new health-care marketplace. Even without gagging doctors, the large firms can force them to toe the line and avoid expensive treatments because doctors who disregard managed care guidelines risk being dropped from the firms' provider lists.

Daschle said, "Now we know what the Republicans mean by HMOs -- 'half measures only.'"

Whatever. Ramming home their bill, the Republicans knew it would be vetoed by Clinton. This had to be comforting to the insurance lobby since inaction was exactly what it wanted.

In his closing statement, Lott spoke about how wonderful the American health-care system was, with new drugs and therapies coming each month. Sure, some protections were necessary, he said, but "Congress should not imperil the continuing transformation of American medicine. It's not our job to interfere."

Even as he spoke, the invisible hand went on working its magic. There was the psychiatrist in Maryland, ordered by a mental health HMO to submit the transcript of her session with an obsessive-compulsive if she wanted reimbursement. There was the physician in Oregon who sought a blood-sugar test to see if a patient had diabetes, and was told the test could only be given to diabetics. An asthmatic in Washington, D.C., got to see a specialist after waiting for three years. And everywhere across the land, doctors with years of training and experience spent hours on the phone arguing with clerks about how to treat their patients.

Oddly, despite the relative absence of "government bureaucrats," private enterprise hasn't streamlined the U.S. health care system. In the United States, somewhere between 15 and 35 cents on the dollar of health care is spent on overhead. In Canada and Britain, with socialized care, the numbers are more like 5 to 10 cents. "The system is going to collapse of its own weight," predicts Judith Shindul-Rothschild, a Boston College nursing school professor who was an early critic of managed care. She compares the growing national alarm over HMOs to the 1960s panic about nursing homes that led to passage of Medicare. "I predict that we'll have a single-payer system in this country by 2010," she says.

Kennedy, meanwhile, promised to keep fighting for more meaningful reform. "I was here in 1964 when a Medicare proposition lost, and in 1965 when 18 senators who voted no the year before switched their votes," he told reporters. "I'm sure we'll be successful in the long run."


By Arthur Allen

Arthur Allen writes on health, science and other issues for Salon and Kaiser Health News. He lives in Washington.

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