While rummaging through the National Archives a few years ago to prepare
for a family reunion, Lorenzo Nichols stumbled upon a family secret — great-aunts and -uncles who had died in infancy back in South Carolina in the 1920s. The records said nothing about cause of death, but Nichols, a blunt-spoken retired Secret Service agent, had his suspicions. His son Zakee, born in 1980, had been hospitalized repeatedly from the time he was a year old with shooting back and leg pains from sickle cell anemia. “In the old days they’d call it ‘growing pains,’” says Lorenzo, 51. “They’d say, ‘So-and-so got the growing pains and died.’ And that’d be all.”
The days when infant sickle cell patients simply caught cold and died
without even being diagnosed are mostly, though not entirely, in the past.
Befitting his profession, Lorenzo and his wife, Veronica, 49, have taken no
chances in Zakee’s care. They brought their only son up with the conviction
that sickle cell could be survived if its dangers were respected, and made
sure he avoided cold drafts, hard exercise and other behaviors that put
patients at risk for pneumonia, pain crises and other ravages of the
disease. But there were things even they couldn’t control. Around the
time his father began peeking into the history of the family’s sickle cell
genes, Zakee, a seriously thin, bespectacled youth, left the pediatric
clinic and entered the world of adult care. And that, say advocates of
patients with chronic illnesses, is a dangerous place to be.
Washington Children’s Hospital Center had been Zakee’s home away from home from the time he could crawl. Children’s coddled its young charges with social workers and play rooms, treats and family services. The adult clinic at the hospital where Zakee goes now has none of that. To be sure, Zakee had the good fortune to be living at home, comfortably, in a small subdivision in the countryside south of D.C. He was under the protection, as a college student, of his father’s excellent government-issued insurance. But the future loomed menacingly. Once he entered the workplace. his “pre-existing condition” would be an albatross, warning away prospective employers leery of jacked-up insurance premiums.
Sickle cell disease is a genetic illness characterized by fragile, crescent-shaped red blood cells that are inadequate oxygen carriers and cause painful
clogging of the blood vessels. The adult sickle cell patient’s world is
laden with obstacles — unpredictable, wrenching pain episodes; complications of the spleen and liver; leg ulcers and hip replacements; stroke. Worst of all, for many patients, is the vulnerability — the fear of being forced to enter a strange emergency room whose staff, unfamiliar with sickle cell, are skeptical of the typical patient’s need for large doses of powerful narcotics like morphine, Demerol and Dilaudid.
The Nicholses were taking no chances. “I’m studying business,” said Zakee,
now 19, “because I’m going to have to be independent, and well off.”
Increasingly, as science gains new footholds in its comprehension of
genetic disease, patients with inherited disorders are surviving well into
adulthood. Sickle cell and cystic fibrosis are two good examples. In a
sense, the diseases are shadow images of each other: Both are caused by
mutations in a single gene that, in our evolutionary past, conferred
advantages: A single sickle cell gene protects the carrier against malaria;
a single cystic fibrosis gene helps stave off cholera. But until the last
few decades, children who inherited copies of the mutated sickle cell or
cystic fibrosis genes from both parents did not survive. Credit molecular
medicine with changing that. Today, the 90,000 or so Americans with sickle cell have a median life expectancy of about 45; the 30,000 cystic fibrosis patients, on average, will live into their 30s — and beyond, if new
treatments live up to their promise.
But in the era of cost-cutting managed care, the world in which these
patients survive is not all that welcoming. These patients are at the crux
of the central paradox of American medicine — increasingly sophisticated
diagnosis and treatment, and increasingly short funds to pay for them. The
20 or so top sickle cell centers across the country are struggling
financially because of low reimbursement from insurers for the myriad
services required to take care of this chronic disease. Patients too poor
to afford good private insurance (or the supplemental care required) find
themselves switched from doctor to doctor, struggling to get referrals to
specialists who know how to take care of them. When their regular care
suffers, they end up being treated in the emergency room, and suffering
unnecessary complications.
Take Floyd, a 48-year-old Baltimore warehouseman who was forced to stop
working in June when he developed leg ulcers, a frequent complication of
sickle cell. Floyd, who didn’t want his last name used, was switched from
his employers’ insurance to a welfare HMO, and found that everything got
harder. “You’re trying to see the doctor you’re familiar with and you need
to get written permission from the stranger they send you to and most of
the time you can’t get it. You’re dealing with the doctors’ egos — you know
what kind of treatment you need but they all have their own opinions and
you don’t want to insult them. I stopped work because they want me to stay
off my feet. But I’ve been running from agency to agency trying to get my
disability for six months, so I’m still on my feet, but I ain’t getting paid
for it. And I could write a book about my experiences in ERs. I’ve been
thrown out of hospitals bodily.”
Floyd says he’s learning the system — but
“a lot of sickle cell patients do not fight,” says Joan Wise, chairwoman
of Floyd’s sickle cell support group. “They just go along with the
program, and they are treated badly because they don’t know nothing about
fighting.”
“A lot of people are being denied treatments that could extend their
lives,” says Beth Sufian, a Houston attorney and cystic fibrosis patient
who frequently defends people with disabling illnesses. Two new cystic
fibrosis drugs — Pulmozyme, which liquefies excess lung-clogging DNA, and an aerosol antibiotic called Tobi — have become the standard of care for CF patients, but together they cost about $50,000 per year. HMOs sometimes refuse to pay for them; that’s when Sufian steps up. “We can have the best drugs, but if there’s nobody to pay for them, nobody’s going to get them,” says Sufian. The chronically ill survivor of an inherited disease is the nightmare of the insurance industry, she says: “Doctors try to tell the insurance companies that these drugs will save lives — but the insurance companies in fact could really care less.”
As difficult as their lives are, cystic fibrosis patients have some
advantages. Almost exclusively white people, they have the well-run Cystic
Fibrosis Foundation, started in 1955, working on their behalf. The
foundation has attracted numerous well-heeled, well-connected sponsors
(Bill Gates gave $20 million to the group last month; and the CF gene was first isolated in 1989 by Francis Collins, now head of the NIH’s genome
institute). By contrast, sickle cell patients lack resources and
clout — perhaps because AIDS and asthma, two other diseases that
disproportionately affect poor African-Americans, have absorbed so much
attention and money. Sickle cell disease “hasn’t caught on for
philanthropy,” says a leading sickle cell doctor. “The white population
looks at it as a disease of African-Americans and the African-American
philanthropic community really hasn’t championed it — I don’t understand
why.” Despite huge annual budget increases at NIH, the National Heart, Lung and Blood Institute’s funding for sickle cell research has declined
steadily since 1994, when it peaked at $47 million.
About 90 percent of American cystic fibrosis patients are treated in
specialty clinics certified by experts in the disease; fewer than half of sickle
cell patients are believed to enjoy such care. Whereas the Cystic Fibrosis
Foundation has mandated that the clinics it funds and certifies each have
at least one adult specialist by the end of 2000, there is no similar
standard of care for sickle cell.
In fact, many specialty clinics are
reeling under cutbacks. Dr. Elliott Vichinsky, a prominent specialist who
cares for about 600 sickle cell patients at Children’s Hospital in Oakland, Calif., estimates that fewer than 20 percent of the services he provides are
reimbursed by insurers, about a third the level of a decade ago. “Managed
care and chronic illness are a devastating combination,” he says. “Managed
care wants to cherry-pick out the sick patients, and with sickle cell
you’re dealing with a rare illness in a group with limited political clout
and a shortage of physicians interested in treating it.”
This observation is seconded by Dr. Oswaldo Castro, who heads the adult
sickle cell clinic at Howard University, the largest in the Washington area, where Medicaid patients — a large segment of the sickle cell
community — are now funneled into HMOs. “These patients require continuity of care by specialists. With the new gatekeeping paradigm, they have difficulty getting the follow-up visits. We’re seeing fewer patients than
before because they have more trouble getting referrals.”
The industry responsible for the care of the chronically ill readily admits its failings. “The opportunity is there to establish personalized care for the chronically ill, but in too many locations the approach is to ratchet down payment to the doctors and providers who have the courage to take on these patients,” says John Selstad, vice president of the National Chronic Care Consortium, which represents large health care companies that care for the chronically ill. “Those seeking to do a better job get penalized.”
Because of their poor health, sickle cell patients frequently have trouble
living independently as adults. That leads to depression. The social
workers and family counselors available to kids aren’t there for them as
adults. “They must fend for themselves,” says Vichinsky. “The majority
become ER patients or get connected with a well-meaning doctor but they’re unable to benefit from integrated services that can prevent deterioration.” Vichinsky sees these patients after they’ve “been brutalized by the health care system.” By then it’s often too late. “Two out of three deaths in my adult population are preventable,” he says.
Ivor Balin Pannell, a 35-year-old retired dancer in the Bronx, set up a
patient advocacy group several years ago in reaction to his bitter
experiences in emergency rooms. “When you’re a baby with this kind of
disease they fawn all over you; they say, ‘Oh my goodness, this poor baby is
in pain,’” he says. “That same baby comes in as an adult and they say, ‘Look at this pain in the ass.” Pannell was 25 when he found himself asking a skeptical nurse for a shot of Dilaudid one evening in the emergency room at Cornell Medical Center. “She told me, ‘You’re just trying to get drugs.’ I was just stunned. But since then I can’t tell you how many times I’ve been
called a drug addict to my face.” Patients who tire of such humiliations
often try to medicate themselves at home, Pannell says. But it’s a tricky
business, and sometimes they die. “I must have known a dozen people that’s
happened to,” he says.
Research has yielded improvements in sickle cell treatments, but they are
slow to come on line — and the disease’s lack of political clout plays a
role here, too. In the past few years, studies have come up with the first
effective treatment for sickle cell symptoms — a drug called hydroxyurea,
which had been used to fight cancer. Bone marrow transplants have cured a
handful of sickle cell patients, and cord blood transplants and fetal
therapies have shown promise. NIH-sponsored teams developed a tool helpful for stroke prevention, and the FDA is evaluating a new drug, Flocor, which seems to shorten pain crises by lubricating the slide of sickle cells through the blood vessels. But these new therapies require further testing and refinement, as well as ancillary tests and treatment, and they are seldom reimbursed. So they aren’t widely used.
“The problem with all these treatments is availability,” says Dr. Lewis
Hsu, co-director of pediatric sickle cell at Georgia Comprehensive Sickle
Cell Center in Atlanta. There aren’t enough doctors around the country
interested enough, or well-funded enough, which sometimes amounts to the
same thing, to test them out. “We’re a pretty well-funded center,” says
Hsu, “and yet we’ve had to turn down some drug studies for lack of
personnel. We have data that’s just sitting there because we can’t get the
time to put it out.”
Adults, who now make up more than half the nation’s sickle cell patients,
are particularly underrepresented in research on new treatment. “This is a
large population, whose care we have really studied very little,” says Marilyn Telen, who directs the joint Duke-University of North Carolina sickle cell clinic in Durham, N.C. Adds Vichinsky: “These
are really the orphans of managed care.”
Representatives from all quarters of the health-care debate came together in the White House Rose Garden Tuesday to get behind a pretty simple premise: Health-care workers shouldn’t make the kind of mistakes that cost the lives of as many as 98,000 patients a year.
Flanked by representatives of the health-care industry, business, labor and government, President Clinton signed an executive memorandum directing his health-care quality task force to analyze last week’s Institute of Medicine study that quantified the deaths attributable to medical errors, many of them as a result of wrong prescription-drug doses.
The independent study estimated that medical mistakes kill between 44,000 and 98,000 Americans each year. About 7,000 deaths were attributed to errors in prescribing or dispensing drugs. The IOM found flaws in the way hospitals, clinics and pharmacies operate. “Once you know about a problem, you’re under a moral obligation to deal with it,” Clinton said when asked whether admitting mistakes might expose health-care professionals to increased lawsuits. “Whatever the consequences are, we have to go forward.”
Clinton did more than use the presidential bully pulpit to get medical plans and hospitals on the right track. Each one of the more than 300 private health plans that insure federal workers will now be required to institute quality-improvement and patient-safety measures, the president said.
Clinton also said he plans to make sure there’s enough money in his 2001 budget — scheduled to be released early next year — to “provide the largest investment to eliminate medical errors, improve quality and enhance patient safety we’ve ever offered.”
About 85 million people — one in three Americans — get their health care paid for all or in part by the federal government. This gives the federal government significant leverage over these private health companies. And if such practices are put in place for federally covered workers and their families, others covered under such plans are likely to benefit as well.
Like the managed-care industry, which Tuesday said it supports Clinton in this effort, the head of the largest hospital organization also said his group is on board. “We can and we must do better,” American Hospital Association president Richard J. Davidson said at the White House. In a letter to its 5,000 members, the AHA said, “We have to create an environment in which we can learn from failure — a safe, non-punitive environment that supports candid discussion of errors, their causes and ways to prevent them,”
Clinton’s effort got a boost from the nation’s largest private-sector health-care purchaser, General Motors. “The IOM study suggests that of the 1.25 million people GM covers, on average more than one life is lost each day due to preventable medical error,” said Jim Cubbin, executive director of GM Health Care Initiatives. “That is unacceptable.” GM’s purchasing clout, like that of the federal government, could lead to substantial changes in the health-care system. For example, GM will require the hospitals that serve its employees to use the Computer Physicians Order Entry system. The system, said Cubbin, has been shown to reduce serious prescribing errors by more than 50 percent. Yet fewer than 1 percent of hospitals use it.
At the other end of Pennsylvania Avenue, Sen. Ted Kennedy, D-Mass., announced he will introduce the Error Reduction and Improvement of Patient Safety Act. His legislation would make sure the IOM’s recommendations are carried out. He would create a new Center for Patient Safety, which would require hospitals and nursing homes to adopt concrete measures to reduce medical errors as a condition of participating in Medicare and Medicaid. And he would require health organizations to report to their states any medical errors that result in serious injury or death. About one-third of states currently have such requirements. Kennedy said he was “amazed and enormously distressed” over the IOM report and predicted a “strong bipartisan bill” next year.
We knew Mrs. Appel had at least two liters of fluid in her lung, a result of the pneumonia that had forced her into the hospital. So where were they? In one final attempt to remove the fluid and ease my patient’s breathing, I pulled back the syringe plunger as hard as I could. However, no yellow liquid came out through the tubing like it was supposed to. My intern watched and finally instructed me to remove the plastic tubing from the lung of the 76-year-old woman. As it came out, I noticed the very end of the tube was slightly frayed.
We met up with my resident in the radiology room and described our failure to extract much fluid. He apologized for not being there with us, but another patient had needed him. Within minutes the technician emerged from the darkroom with our post-procedure X-ray: Indeed, the right lung was just as full of fluid as before. The left lung, however, was clear — except for six centimeters of plastic tubing. It must have broken off during the procedure.
Even a second-year medical student such as I was could see that not only had I tapped the wrong lung, but I’d also left an irretrievable foreign body inside my patient as testimony to my mistake. I thought I was going to vomit.
As I looked at the X-ray and the startled faces of my superiors, my first thought was “Poor Mrs. Appel.” This was silently followed by “I hope this wasn’t my fault” and then “We don’t have to tell anyone about this, do we?”
Apparently we did. Of course, as a student, I feared for what this would do to my grade. But far scarier than this was that after working so hard and doing so well up to that point, I didn’t want the other doctors, whom I truly liked and respected, to end up remembering me for this one, albeit large, blunder. After all, they had respected my medical ability up to this point — the last thing I wanted to do was risk losing that.
Looking back, I can’t honestly remember which was harder: telling frail old Mrs. Appel, exhausted from both her recent procedure and the pneumonia that had caused it, that we had to do it all over again the next day because I had screwed up; or telling my irate attending the same thing. I knew it was only right that the patient be told what had happened. I also knew that I had no choice; my attending would find out later anyway, when he saw the X-ray. Nevertheless, it broke my heart to do both.
It’s well-known that mistakes occur in the hospital. Some of these are preventable. Now a newly released study by the Institute of Medicine shows the consequences of these mistakes. Each year, the report claims, between 44,000 and 98,000 hospitalized patients are killed.
One proposal to prevent these gaffes in judgment is to create a Federal Center for Patient Safety. This would involve, among other things, having doctors voluntarily come forward and admit when they make a mistake.
Although I applaud the intentions, I have to wonder whether it’s feasible. I just don’t know if doctors would come forward. Part of the reason may be because of a “culture of secrecy,” which the report says exists behind the walls of hospitals and clinics. But this culture of secrecy is less clandestine than the way it’s portrayed — sometimes we don’t air our mistakes because we have already learned from them, and not much can be gained by a formal discussion.
Of course, there is secrecy within any profession. It’s no more common to hear lawyers talking at length about their blunders, or investment bankers going on and on about all their miscalculations. But when it happens in medicine, the stakes are higher. These silent mistakes can sometimes be a matter of life and death.
It was only the third day of my residency when I found myself in charge of handling all the dermatology consults for the hospital. A long day was promising to go longer; we still had two more patients to see on our afternoon rounds.
“Take two biopsies: one for pathology, one for immunofluorescence,” my attending told me. Satisfied that I could handle these simple instructions, she began to walk away. I’d already asked enough questions for a month, it was late and everyone was tired. Two biopsies. How hard could that be?
I stood at the bedside, needle in hand, and explained to the 87-year-old man covered with strange red bumps that I needed to use a tiny cookie-cutter to take a couple samples of skin, and that the only pain would be when I injected the numbing medicine. Ten minutes later, I was done. His only relief came in knowing that he wouldn’t have to go through it again.
How was I to know that skin samples sent for immunofluorescence — a special stain used to diagnose certain diseases under the microscope — were supposed to be placed in saline, rather than the usual formalin?
The odds of the immunofluorescence actually giving us our diagnosis were, my attending admitted, fairly low. So I found myself with several options: I could wait for the pathology diagnosis to come back, and then tell my attending that the immunofluorescence coincided with that result, which it almost certainly would; I could fish the ruined specimen out of the formalin and put it in saline, and then blame the lab for not performing the test correctly; or I could even discard the incorrectly bottled specimen and blame the nameless, faceless “transport system” for our eventual lack of results. It wouldn’t be the first time a physician would use these excuses, and it most certainly wouldn’t be the last. I decided to not say anything at all.
Nevertheless, 40 minutes later, I was at the whimpering patient’s bedside, taking out the cookie-cutter again. Unless my attending went back to count the Band-Aids, though, she would never know.
There are so many pressures that keep doctors from coming forward voluntarily with their errors. The creation of another bureaucracy would only further encourage this secretive behavior. Even getting into medical school is a competitive process, and as a result, the field is saturated with people who don’t like to admit they’re wrong or discuss their shortcomings. And no matter how many times they’re told that their name will be kept anonymous in connection with reported clinical errors, somehow, doctors still tend not to trust outside agencies, especially the government. And who’s to say that a physician who reports one too many mistakes won’t lose his livelihood? He knows better than anyone that unlike any other profession, if you lose your job in medicine, you’re finished. Forever.
While on my gynecology rotation as a second-year med student, my favorite resident was preparing to graduate and start her own private practice. She’d done dozens of hysterectomies over the previous year alone. Yet all her experience couldn’t prevent her hand from slipping just a fraction of an inch, pushing the razor-sharp blade into the patient’s ureter, the tiny vessel that carries the urine from the kidney to the bladder.
The ureter belonged to an elderly woman with cancer, who would not have lived much longer regardless. But the extra two hours of anesthesia and mechanical respiration required while repairing the damage was too much for her and, eventually unable to get enough oxygen to her brain and other tissues, she died.
This was an honest mistake: The ureter is located right in the middle of the surgical area and is very hard to find. Every doctor knows this. Furthermore, every doctor knows that sometimes, no matter how hard everybody tries, the vessel will still get nicked. What good would reporting this accident have done? Who would have learned anything from it?
I urged my resident to put it behind her, told her there was nothing else she could do. Then my gynecology rotation ended two weeks later. I’m still not sure whether she has ever forgiven herself.
Most doctors go into medicine, on some level, to help others. However, most doctors are also rational people. Yes, they don’t want to lose their livelihood and source of income. Yes, they don’t like to be wrong. But when they make a mistake, most doctors know that they’ve erred, have learned from it, already feel terrible enough about it, and can’t do anything to change what they did. Why should they then go around discussing it?
Of course, one answer to this question is that lifting the shroud of silence would allow those doctors too intimidated by its tradition to finally relieve themselves of the burden of carrying around past mistakes. An environment in which failure can be openly and honestly discussed would allow people to get the guilt off their shoulders of events long past.
And the truth is, patients do die because of mistakes made in the hospital. These mistakes are made, at one point or another, by everyone. Nobody doubts that these people are trying their best, sincerely doing everything they can for their patients. But every great once in a while, something happens, and once it has, the terrible results cannot be undone. The number of deaths reported by the Institute for Medicine is tragic, and I do believe that something should be done to shrink that number, to save more lives.
But I’m not sure that the answer lies in having to tell the whole world that you misplaced a skin sample, or sliced a ureter. The culture of secrecy is there for a reason. When dealing with people’s lives in a field that focuses almost exclusively on what you do wrong and not what you do right, it’s hard enough to accept that you might have made a mistake, let alone know that your colleagues and perhaps the world at large are judging you as well.
In my short medical career, I don’t think I’ve ever met a doctor who didn’t have a story of some type about a mistake gone unnoticed. Nor do I think I know one who doesn’t still carry it around inside today.
Leave it to the lawyers to muck up a perfectly good “right-to-sue” law.
The last thing that congressional defenders of the Patients’ Bill of Rights wanted to hear, as they battled their way to a decisive victory in the House of Representatives earlier this year, was that the same pinstriped gang that successfully sued Big Tobacco was gearing up to mount an offensive against the managed-care industry.
Some proponents of the managed-care reform bill now fear that the highly publicized legal attack could derail the legislation on its way to the president.
“It doesn’t make a lot of the proponents of the bill very happy to see these people running after lawsuits,” says Dennis Fitzgibbons, a Democratic staffer on the House Commerce Committee, who has been an active supporter of the legislation. “The timing could have been better.”
In October, the House voted 275-151 to pass the Norwood-Dingell Patients’ Bill of Rights legislation, a sweeping reform package that, among other things, gives HMO members the right to sue managed-care plans that deny them access to care.
The passage was a landmark victory for House Democrats, who — with the aid of massive public outcry over managed-care abuses — got a lot of Republicans to support the legislation.
The strongest argument against the Norwood-Dingell package — that it would create a whole new universe of costly legal warfare that would ultimately benefit nobody but the nation’s trial lawyers — was vehemently refuted by bill supporters, and ultimately failed to persuade moderate Democrats and Republicans to turn against the legislation.
But since then, as details of a coordinated attack against the managed-care industry by some of the nation’s top attorneys have emerged, key legislators now appear to be reconsidering the liability provisions contained in the bill.
While that legal offensive is being mounted under existing law, and has little if anything to do with the Norwood-Dingell bill, it has provided opponents of the legislation with a valuable rhetorical tool to use in the ongoing debate.
“The trial lawyers’ activity is beginning to make [the] individuals that voted for Norwood-Dingell think again,” contends Karen Ignagni, president of the American Association of Health Plans (AAHP). “I see a palpable shift in individuals’ thinking.” As the HMO industry’s foremost trade and lobbying group, AAHP has been an active participant in the managed-care debate.
Moderate House Democrat Cal Dooley agrees with Ignagni’s assessment.
“To see what is a very aggressive and coordinated attack by trial lawyers on the [managed care] industry as a whole, you can’t be under any illusions that this is not going to cost the health-care system money,” says Dooley, D-Calif., who voted in favor of the Norwood-Dingell bill.
Dooley and Ignagni are referring to the revelation, first reported by the Wall Street Journal in late September, that the cadre of attorneys who mounted successful multi-million-dollar class-action cases against the tobacco industry have now turned their eyes toward the managed-care industry.
Class-action suits aren’t even allowed under Norwood-Dingell, but the trial lawyer activity belies, to some extent, the argument of the bill’s supporters that existing law does not allow patients to sue their managed-care plans. Managed-care companies are protected from a great deal of litigation by the Employment Retirement Income Security Act of 1974 (ERISA), which Norwood-Dingell would amend.
Dooley, who represents a low-income agricultural district in Southern California, says that much-needed managed-care reforms should not come at the expense of reduced access to health insurance. “I don’t have people in my district complaining about managed care [abuses], I have people complaining about having no health care whatsoever. They would be absolutely thrilled to be in a managed-care plan,” Dooley says. “I struggle with accepting that dollars that are going to be spent on lawyers fees and defending class-action suits are really going to be providing” better care to patients.
For the bill’s supporters, the revelations about mounting trial lawyer activity couldn’t come at a worse time.
When Congress reconvenes after the holidays, the House bill will have to go to conference with Senate legislation that includes far fewer patient protections and does not allow HMO members the right to sue their health plans.
Senate Republican leaders — who hold great sway over the conference process — have adamantly opposed liability provisions and are almost certain to raise the specter of trial lawyer activity in upcoming managed-care debates.
Trial attorney David Senoff agrees that the timing of the tobacco attorneys’ class-action efforts could end up hurting the House bill’s chances of passage. “Ultimately the lawsuits will impact on the decision,” Senoff says. “Republicans are gloating. All of the things they have been trumpeting … are coming true.”
But Senoff, who specializes in suing on behalf of managed-care patients who feel they have been wronged by health plans, says that it would be a “miscarriage of justice” if the current legal activity were to derail the managed-care legislation — particularly since the cases in question are being pursued under existing law.
Fitzgibbons agrees. “The [Norwood-Dingell] legislation itself does not enable class-action suits; in fact it specifically would [prohibit] all of the [types of cases now being pursued] under existing [law],” he says. Under the Norwood-Dingell bill, a managed-care patient would be required to go through an out-of-court third-party review process before filing any lawsuits.
Still, such fine distinctions will probably be lost in the bombast that will doubtless surround the managed-care debate in the coming congressional session, observers say.
“The politics next year are going to be even more prominent than they were this year,” says a highly placed Senate leadership source who asked that his name not be used. As the managed-care debate becomes fodder for pointed campaign speeches, the chances that the combatants in the debate will come to an amicable compromise will dwindle markedly, the source says.
Democrats who want to use the legislation as an issue in their campaigns will be in no hurry to push the bill through conference, and Republicans who oppose the legislation certainly won’t be in a rush to craft compromise managed-care legislation, observers say.
Compounding the problems facing the House managed-care legislation is the fact that the conference committee, which must reconcile the Senate and House bills, is “pretty heavily stacked” against a compromise, Fitzgibbons says.
The House leadership pointedly excluded Rep. Charlie Norwood, R-Ga., from the conference committee. A doctor and adamant supporter of managed-care reform, Norwood helped draft the House legislation and was largely credited with building the massive bipartisan support that the bill enjoyed.
The Senate source, who opposes the House bill, agrees with Fitzgibbons’ assessment. “You couldn’t get a more diametrically opposed group of conferees,” he says.
Given the increasingly acrimonious dissension between the two camps — aided in no small part by mounting concerns about managed-care litigation — the possibility that the managed-care legislation will die on the vine is a “very likely scenario,” Dooley says, adding that he doesn’t think the debate will be resolved next year.
Since George W. Bush took office as Texas governor, 9,921 Texans have died of AIDS and 19,532 new cases have been diagnosed. Texas ranks fourth in the country — behind only New York, California and Florida — for reported AIDS cases.
In those 60 months, Bush has never said the word AIDS publicly in either a health, social or policy statement, according to leading AIDS organization leaders on a city, county and state level, reporters covering the governor’s office, and gay community leaders.
“To the best of my knowledge he has never even said the word AIDS, in any form,” says Rep. Glen Maxey, the state’s only openly gay legislator. Echoes Don Maison, executive director of AIDS Services of Dallas: “Through the context of funding on AIDS and HIV and through two legislative sessions that we’ve been through with him, there’s no AIDS record.”
“AIDS? He’s never mentioned the word,” says Harry Livesay, the former director of advocacy and public policy for Bering Community Service Foundation, an AIDS service organization in Houston. Livesay founded the HIV policy group that brings together the state’s agencies to work on HIV and AIDS policy.
Technically, Bush has in fact said the word “AIDS,” Livesay admits, but only in “letters of commendation to organizations on anniversaries, or things like, ‘Laura and I join you in praying for recovery from AIDS,’” Livesay says.
A senior Texas official, who oversees and sets policy in the AIDS and HIV field, and who spoke only under the cover of anonymity, said that “in my … years [in this position], I have not heard AIDS addressed publicly” by Bush.
AIDS is off Bush’s radar screen, period. Bush is the only governor in the country who ignored an urgent letter in September from Children Uniting Nations chairwoman Daphna Ziman for feedback or resources regarding the AIDS epidemic in Africa.
“Forty nine governors responded, including his brother,” says Ziman, who just received the global peace and tolerance lifetime achievement award from the Friends of the U.N., along with Mikhail Gorbachev. “I mean, it’s a crisis for everyone. Ten million children with AIDS, can you imagine? One governor helped to arrange the shipment of 100,000 basketballs. Gray Davis offered me the support from the medical facilities at UCLA. We sent Bush the letter twice. A letter and a fax. We didn’t want to take a chance.”
Ziman says flatly: “When it comes to AIDS, I just think he doesn’t care.”
POZ magazine reported this summer that a request to Bush spokeswoman Linda Edwards for transcripts of Bush’s statements addressing AIDS yielded nothing beyond congratulations and condolences sentiments. A request last week by Salon News was fielded by Bush campaign spokesman Scott McLellan, who said he would respond. No transcripts were sent, and the Bush campaign offered no comment on the governor’s AIDS record.
While the national media has painted Bush in lavender-friendly hues, at least partly because he doesn’t engage in the gay-baiting rhetoric of a Pat Buchanan, gay, lesbian and gay-friendly Texans are alienated across the board.
AIDS is only one of several hot-button gay and lesbian issues Bush has at best ignored and at worst opposed since he took office in January 1995. He vehemently opposes both same-sex marriage and gay and lesbian child adoption. The latter has raised the ire even of gay Republican Log Cabin leader Rich Tafel, who thus far has maintained a measured response to Bush. Tafel hopes Bush is still open to being convinced.
“If he doesn’t think gays are fit to be parents, that would be a serious issue for an organization like ours,” Tafel says. “That’s an issue our members are asking about.”
It is common knowledge in political circles as well as among gay leaders that Bush scuttled the Texas hate-crimes bill that would have protected gays from discrimination based on sexual orientation. “Everyone knew that all he had to do was give the signal and the hate crimes bill would have sailed through,” says Maxey.
During his first-term election campaign, Bush allowed his strategists to use gay rights as a wedge issue, baiting then-Gov. Ann Richards for her support of repealing anti-sodomy laws. Once elected, Bush appointed a health commissioner unpopular with the gay community for his support of mandatory AIDS testing.
“He has been totally ineffective in dealing with HIV and AIDS issues as well as issues that are important to the gay and lesbian community, especially the hate-crime bill,” says Francisco Sanchez, the openly gay secretary of the Harris County Democratic Party.
Tim Thetford, a legislative aide to Rep. Harryette Ehrhardt, thinks Texas gays need to alert gays around the country to Bush’s policies.
“I think we need to make a statement that we have a do-nothing governor on gay and lesbian issues who is paternalistic and will avoid any confrontational issue,” says Thetford. “I think it’s more dangerous to have a president who ignores our concerns than it is to have one who opposed them. At least we can dialogue with someone who opposes us.”
Bush’s blind eye toward the gay community has also been apparent to the local press. “He has never been that sympathetic to gay issues,” notes Wendy Benjaminson, the political editor of the Houston Chronicle. “He is not sympathetic on hate crimes, on gay adoption or gay marriage.”
Bush’s attitude toward gays was reported in an exclusive story by political reporter Polly Hughes on the cover of the Houston Chronicle on Aug. 19. Maxey disclosed to Hughes what had been whispered about since the spring: a private conversation between the governor and Maxey, an openly gay legislator, after a particularly grueling legislative battle. According to Maxey, Bush pulled him aside and confided, out of earshot: “I value you as a human being, Glen, and I want you to know that what I say publicly about gay people is not directed at you personally.”
Though the Bush camp dismissed Maxey’s story as partisan spin, rumors had been circulating for months because Maxey had immediately after the exchange repeated the story verbatim to colleagues sitting nearby. “Do you believe what Bush just said to me?” is how a fellow legislator, who requested anonymity, described the interaction. Maxey also reported the story to several colleagues within days, and to another newspaper reporter, who confirmed the alleged Bush-Maxey exchange, but had not reported it because at the time Maxey had revealed if off the record.
But the cover story raising the issue of Bush’s two faces toward the gay community barely made a ripple outside of Texas, because it collided with the late-summer firestorm that consumed the national media at the time: the did-he-or-didn’t-he cocaine story. “We got the Maxey story the same day that the cocaine story broke, and it got overshadowed,” Benjaminson says.
Another Bush trait that has dogged him on the campaign trail — his unpreparedness on issues that don’t personally interest him — has been a longstanding irritation to Texas’ gay community.
“There was a major demonstration in March, 6,000-8,000 marching to protest anti-gay-and-lesbian foster care and adoption legislation. The next day he’s asked, ‘Where do you stand?’” Maxey recalls. “He has no answer. None … That kind of demonstration, and the very next day he’s totally unprepared to respond.”
Sanchez admits he is watching the Bush campaign with concern. “Over the past seven years [of the Clinton administration] we’ve seen tremendous progress at the executive level in how gays and lesbians are treated in the federal workplace and in the provision of health-care services and in the funding of HIV and AIDS issues. Those have been large-scale executive initiatives,” says Sanchez. “If you put a person in that office who has exhibited no leadership in those areas, then we either don’t move forward or we fall back, very far back.”
Proving once again that there’s nothing quite like a legislative threat to
grease the wheels of corporate altruism, HMO giant UnitedHealth Group
earlier this week announced that it would give physicians outright control
over all patient care decisions. With federal managed-care reform
legislation looming and the economic basis for micromanaging physicians
eroding, other HMOs may soon follow suit, observers say.
“Winston Churchill said, ‘In the long run, Americans will always do the
right thing — after exploring all other alternatives.’ That is so much
the case in the American health-care system,” says Princeton University
health-care economist Uwe Reinhardt.
“Eventually these people will realize that [the pre-authorization model]
buys them ill will and costs them too much money,” he added.
United’s announcement — which came conveniently one day after the start
of the federal government’s open-enrollment period, during which 8 million
government employees will be allowed to switch their health coverage –
has resulted in a deluge of uncritical press for the HMO giant, and has
set combatants on both sides of the managed-care debate into full spin
mode, molding the news to support their widely disparate positions.
“The market has been leading and is ahead of legislation,” says Karen
Ignagni, president of the American Association of Health Plans (AAHP), the managed-care industry’s most visible trade and lobbying group.
A recent AAHP member survey largely supports Reinhardt’s predictions about the decline of pre-authorization, Ignagni adds.
While “it’s not going to be a one-size-fits-all” approach, “a number of
plans are going to reduce their procedure-by-procedure” involvement with
physician decision-making, Ignagni says, citing preliminary findings of
the survey.
The survey, which Ignagni says was initiated long before United’s
announcement, polled a number of HMOs on the subject of pre-authorization.
Full results of the survey will be released in the next few months.
Advocates of managed-care reform have a different take on the United
decision.
“The other side has given up tremendous ground and we are winning,” says John Stone, a staffer for Rep. Charlie Norwood, R-Ga. “The other side would
say: ‘See, the managed-care industry is coming around through free market
means.’”
But, Stone warns, “as soon as we announce that the conference report is
dead, [United] can turn around and reverse [its policy].”
Norwood was the principal author of the Norwood-Dingell “Patients’ Bill of
Rights” legislation that passed the House of Representatives 275-151 last
month. That bill is set to go to conference with a more lenient Senate
managed-care-reform package.
The passage of the Norwood-Dingell bill — which, among other things,
would give patients the right to sue managed-care companies that deny them
access to care — played a “very large role” in United’s decision, Stone
contends.
“Because of their decision, United, under the Norwood-Dingell bill, would
remain entirely shielded from all litigation,” Stone says.
The ironic thing in all of this is that United and other health plans may
actually save money by scrapping their controversial pre-authorization
measures, Reinhardt says. “If you supervise every doctor’s [decisions] but
turn down only 1 percent of their proposed treatments, then obviously you
are losing money.”
Ignagni confirms that the average HMO approves 97 percent of all physician
treatment recommendations. At the same time, managed-care companies
maintain huge staffs to evaluate those recommendations.
“They [United] have seen in their records [that they were spending] $100
million a year to deny $20 million a year worth of coverage,” Stone
asserts.
Far less expensive than pre-authorization is the “profiling” method that
is being adopted by United, Reinhardt says. Under a profiling approach, a
health plan gives physicians more or less free rein to make care
decisions and then examines those decisions at intervals to identify
physicians who don’t hold to accepted care practices.
“If a physician … winds up being a very heavy prescriber of an expensive
antibiotic or orders a lot of MRIs, then that physician will be taken
aside” and spoken with, Reinhardt says. “It’s much cheaper to do and just
as effective.”
United representatives could not be reached for comment.
