By the time she finished medical school at UNC-Chapel Hill, Carol Kirschenbaum was committed to the goal of universal health care, which means "appropriate health care on a regular basis for everyone," she says. By then she was in her mid-40s and had seen a lot more than the typical new doc. She'd taught school in New York, trained as a physician's assistant at Duke, then worked for six years in the radiation oncology department at UNC Hospitals.
The R.O. work was a big part of it: seeing women come in with advanced cervical cancers and knowing that, if the health-care system were better at providing preventive care, they might have had Pap smears sooner and their disease, now likely to be fatal, could have been spotted and controlled. Most of these women had health insurance, but not all. She remembers one in particular who had a temp job with no benefits; she worked at Duke Hospital.
Really, it was a lot of things that convinced Kirschenbaum, now a Durham internist, that it was time to change the system. It was the migrant workers at the farm labor camp in Newton Grove where she assisted one summer studying the resurgence of tuberculosis--the workers most at risk, it seemed, weren't the migrants from Mexico but rather the African Americans whose poverty, rates of untreated alcoholism and lack of access to health care in general was actually worse. It was the people she'd seen who came to the hospital emergency room with heart infections caused by bad--no, by the lack of any--dental care. A disease that started in their gums now threatened their lives.
This just shouldn't be happening in the richest country in the world, Kirschenbaum thought. But it was, and is. The United States remains the only country in the industrialized world that does not assure every citizen access to health care on an equal basis. "For me, not providing that access, in a country as advanced in as many ways as ours, is immoral," Kirschenbaum says. "I don't think we can offer the excuse that we can't afford it and watch people die. And I did, I watched people die."
By coincidence, Dr. Kirschenbaum finished her residency and started her medical practice in 1994, just as President Clinton's proposed health-care reforms, meant to move the country closer to universal coverage, were crashing and burning in Congress. The November elections that year saw a Republican landslide widely attributed to the failure of Clinton's plan.
In North Carolina, too, GOP victories put a final nail in the coffin of reform efforts. The year before, advocates of universal coverage had gotten the General Assembly to create a special Health Planning Commission with Gov. Jim Hunt as its titular chair and legislative leaders from the House and Senate as members. The commission found that 920,000 North Carolinians were without health insurance of any kind. They were mainly the working poor, people making just enough money to be ineligible for Medicaid but not enough to buy their own insurance. Thousands more had inadequate insurance plans. The result: One-fifth of the state's residents were sicker and dying sooner than they should have been.
Moreover, the commission's studies indicated that--depending on how it was done--extending adequate coverage to everyone need not cost more money and might, in fact, save some. All told, the bill for health care in North Carolina then was $21 billion a year, and $5 billion of that was for administration. By establishing a so-called "single-payer" system that would slash into the overhead--a single government or nonprofit agency, instead of hundreds of for-profit insurance companies and HMOs--North Carolinians could cover every resident and still save a net $1.13 billion in 1994 dollars.
But, facing the same kind of entrenched health-insurance industry opposition that defeated national reform, the state commission couldn't bring itself to recommend an overhaul of the system--especially after Republicans seized control of the state House, ending a century of Democratic dominance in Raleigh. The commission's last report, in December 1994, called for further studies. A month later, the newly elected legislature put the commission out of business.
That's when Kirschenbaum went into action. She got in touch with a Chicago-based group called Physicians for a National Health Program. It sent her a list of people in North Carolina who'd supported the Clinton reforms. She called them up and started to organize. By 1997, the North Carolina Committee to Defend Health Care emerged with Kirschenbaum as its chair.
The N.C. Committee's goal is to amend the state constitution so that it assures residents "appropriate" health care as a right, in the same way it guarantees a "general and uniform system" of public schools. Amending the constitution is a two-step process: The General Assembly has to approve, by three-fifths majorities in both houses, and then the voters must give majority approval in a referendum. House Bill 1396, introduced by Rep. Verla Insko, D-Orange, started the process last year. If ultimately enacted, it would give the General Assembly the job of turning this new constitutional right into reality by May 31, 2004.
Insko's bill started to move a week ago in Raleigh, and she expects it to come to the floor of the House shortly. It isn't thought to have much chance of getting all the way to the ballot this November. But at a minimum, it has put the issue of health care back on the table after a long absence.
Kirschenbaum knows full well how hard it will be to reach the goal of universal coverage. But she is unfazed by the task. For one thing, she's put together an impressive coalition of supporters, and its ranks are growing daily as health-care costs continue to escalate and the number of people without insurance--now more than 1 million in North Carolina, or 15 percent of the population--continues to grow. For another, she's a fighter, and the biggest fight of her life is also a daily reminder of why decent health care is perhaps the most fundamental human right: Kirschenbaum herself has ovarian cancer.
Kirschenbaum was diagnosed with ovarian cancer three years ago, when it turned up in an ultrasound examination for otherwise routine surgery. She was treated and continued to work as the cancer went into remission. Following a recurrence, she has cut back her practice to limited consultations in cases of lymphedema (swelling associated with cancer treatments), in which she has specialized training.
"Having had a terribly unfortunate thing happen to me," she says, fighting her emotions, "I have also been very fortunate to have the resources to take care of myself. A lot of people don't have those [insurance] benefits. I just feel more than ever that it shouldn't depend on the whims of your good fortune."
Kirschenbaum undergoes chemotherapy treatments three Thursdays every month. They knock her out physically until the following Monday, when she rallies and tries to jump back full-force. Talking about her case, she bounces between psychic poles. On the one hand, she admits she's scared: scared that she won't live a long life, scared of the pain that may come. On the other, she's proud of being a hard worker who still has "a lot of energy" most of the time. She's working hardest on the N.C. Committee, running it out of her home with the help of her husband, Dennis Lazof, a research biologist by trade.
Kirschenbaum has two distinct minds, as well, about health care. Yes, she's a critic--sometimes a scathing one--about the way the system functions and the profit motives of those who increasingly control it. But what's equally clear is that she's proud of her profession and of the people who work with patients. And she's thankful to live in a place where her disease is being treated at two top-ranking medical centers, UNC and Duke.
When it's allowed to work, the United States' health-care system is the best in the world, Kirschenbaum declares. And if it's also the costliest, that's not because the patients and the healers make it that way. "You hear that 10 percent of the population uses 70 percent of the health-care resources," she says, repeating a common complaint. "Those resources are used because people are desperately needing them.
"And," she adds, "you don't ever know if you're going to be one of those people."
But if her disease has reminded her of the system's strengths, the cancer has also put the system's weaknesses front and center. For one thing, it's piecemeal. Some insurance companies pay only for this treatment, others pay only for that one. Some treatments--for kidney failure, to cite one example--are supported generously by government programs. Others, especially preventive services, are not. Kirschenbaum notes ruefully that pending federal legislation is expected to help Medi-caid recipients by paying more of the costs of breast- and cervical-cancer treatments. But what about low-income people who have ovarian or colon cancer, she asks? Or brain tumors? "We're picking a disease here and a disease there."
Also, the system makes access to insurance--and therefore to care--heavily dependent on your employment. Kirschenbaum doesn't have an employer anymore, since she left the group practice she was in. On her own, she's covered for one more year by a generous disability insurance policy. As of next April 1, she'll be eligible for coverage under Medicare. But that's only if she doesn't return to work and earn 70 percent of her former income. If she does, Kirschenbaum's disability plan disappears. It will be critical that her next employer have a large-group plan, so it can absorb the high insurance rates her "pre-existing condition" will precipitate.
"My job choices will be limited," she says. "The fact is, my insurance is no longer tied to my job. It will determine my job."
The last big kink in the system: For-profit companies have replaced the charitable, public-trust organizations of old. They promise to "manage care," and one way they do that is by discouraging primary care doctors from sending patients to expensive specialists or for "unnecessary" tests and treatments.
In her practice, Kirschenbaum's been up against managed care procedures in connection with a massage treatment called decongestive lymphatic therapy. It's been "the standard of care" for 20 years in Germany, where Kirschenbaum learned about it, but is little known here. She recommends it for patients with the kind of swelling often associated with lymphedema, and it can be done by a group of physical therapists in Durham with whom she consults. But insurance companies don't want to pay for it.
The point of the therapy is to move fluid from the arms and legs back into the lymphatic system, Kirchenbaum says, and it can make the difference between a patient being able to work or being in too much pain. Not paying for it is "penny-wise and pound-foolish." But the last time she asked to take an insurer's denial to outside review, the lightly trained employee who'd just overruled her medical opinion had to ask Kirschenbaum what kind of doctor might be able to hear her appeal.
This interference (or oversight) by insurers has been a growing force in health care for the last 15 years. Its growth has accelerated since the failure of the Clinton reforms and the subsequent "corporatization" of the industry, as it's termed by the group Physicians for a National Health Program, which advocates changing to a single-payer system.
Dr. William Cromartie, distinguished professor of microbiology, immunology and medicine emeritus at UNC-Chapel Hill School of Medicine, says that while it's supposed to ferret out "waste" in the system, managed care by private companies is a huge waste all by itself. "You've got 500 insurance companies and HMOs" in North Carolina, he says sarcastically. "They all want to have someone in the hospital watching? It's a mess."
Cromartie is part of a small core group of N.C. Committee supporters who've been meeting regularly with Kirschenbaum for a year to help build support for universal coverage in general, and for the idea of the constitutional guarantee in particular. Another in the group is Dr. William "Bootsie" Edmondson, a Raleigh internist who maintained a solo practice until the maze of insurance rules and overseers finally drove him into retirement. "When I was in practice, medicine was considered an art," Edmondson says, smiling. "It used to be fun." What is it now? "It's drudgery," he says. Listening, a third regular, Dr. Dan Young, a retired Chapel Hill cardiologist, adds: "It's a business."
Young says his own doctor can't see patients for more than 15 minutes at a time--at least that's all the HMOs he belongs to will pay him for. He knows another doctor, working in a practice controlled by a single HMO, who gets gonged by a bell, schoolboy-style, if he exceeds 15 minutes. "It's crazy," Young admits.
For-profit insurers are nothing new in health care, of course. But until the '80s, they were a secondary force in an industry dominated by nonprofit hospitals, Blue Cross organizations and doctors themselves. With medical costs escalating, however, along with the insurance premiums that employers were paying, business groups started to promote the idea of managed care--that is, paying management companies to keep an eye on the labcoats. Soon, the management companies were buying the hospitals and the doctors, producing what critics have termed "the vampire effect": for-profit companies sucking the life out of nonprofit organizations, then forcing them to compete-or-die by getting predatory too.
That was the situation Kirschenbaum walked into when she started private practice in '94. The standard 20-minute visit was cut to 15; hourlong exams were churned out in 30 minutes. As a result, problems were missed. "If you don't have time to really listen to your patients," she says, "it affects how much you can learn about their medical problems." It's especially difficult for doctors seeing new patients; they don't have time to read with care what's in the charts from past visits. And new patients are more and more common as people jump from HMO to HMO, and as doctors join bigger and bigger groups to cope with the blizzard of insurance forms and administrative overhead.
Another problem Kirschenbaum saw: Patients were whipped in and out so quickly, even when the diagnosis they got was right, they didn't always understand it--or understand the seriousness of their medical conditions. "They were diagnosed," she says, "but not treated."
These problems have helped the N.C. Committee gain the support of more than 600 physicians, nurses and other health-care professionals for HB 1396 and its proposed guarantee of "appropriate health care." The Committee also has the backing of a number of influential groups, including the N.C. Public Health Association, the N.C. Pediatrics Society, the N.C. Nurses Association and the N.C. Council of Child and Adolescent Psychiatry.
But the biggest group representing doctors, the N.C. Medical Society, has stayed neutral while it launches its own study of how to achieve universal health care. Dr. Jonathan Kotch, a pediatrician and faculty member at the UNC School of Public Health, tried to talk the Medical Society's legislative committee into getting behind HB 1396 but came away frustrated. "It reminded me why I don't belong to the Medical Society," he says.
Why? All the members seemed concerned about, he says, is that if health care is a right, will that somehow increase their legal liability? In other words, will they be sued more often?
Private doctors, Kotch says, tend to be very conservative--and selfish. "They don't ask, what's good for patients? They ask, what's in it for me?" What's in HB 1396, they think, is inevitably a single-payer system, and they don't want it because it would cut into their earnings.
Who would the winners be if the state assured that everyone could "access appropriate health care on a regular basis" as a fundamental right?
Those speaking out in favor at a public forum in the General Assembly building last week made the answer to that question clear. The winners would be the working poor and their children; people of color; Latinos and Hispanics; people with mental illnesses and physical disabilities; folks with addictive diseases, including alcoholism; and older people needing long-term care.
All are badly served by the existing system, say a host of organizations that represent such folks. The reason: In their zeal to cut costs and stay competitive, everyone in the system--the insurers, the HMOs and the hospitals--is trying to avoid the neediest patients in favor of the younger, the healthier, the more affluent.
For instance, African Americans suffer from a long list of diseases--including diabetes and heart attacks--at rates two to five times higher than whites, according to Carol Parks Bani, a UNC-Chapel Hill professor who specializes in minority health issues. In some parts of rural North Carolina, communities of color have virtually no access to health care, she said, terming that "a slow form of genocide."
But if insurers are ducking the costs, the rest of us cannot--not in the end, anyway. We pay the tab when the underserved must be admitted to hospitals and nursing homes with serious illnesses that a little inexpensive care up front could have prevented or ameliorated. So says Dr. Ronald Levine, also a UNC professor and former state health director. Levine says it's both "the best of times and the worst of times" in medicine: Doctors have a profusion of treatments and drugs at their disposal for people who can pay, but are trapped in a system that too often prevents their use.
We also pay the tab, says advocate Tony Mulvihill, for the 80 percent of prison beds that are occupied by people who needed treatment for alcoholism, drug addiction or mental illness but didn't get it because funds weren't available.
The disabled community faces an especially cruel choice, according to advocate Dave Richards of N.C. ARC. Most want to work and can, he says. But to continue receiving the physical therapy they need, they have to stay on government assistance programs that include Medicaid, since the jobs they can get won't include insurance benefits.
The almost complete absence of insurance lobbyists at last week's forum was a sign that House Bill 1396 has barely registered so far inside the four walls of the General Assembly; if it had, the opposition would have been out in force. Neither of the major political parties has embraced universal health care as an issue since the debacle of '94, notes Jim Jensen, who's followed the issue for the progressive Common Sense Foundation in Raleigh, and legislative leaders have steered clear.
Well, there is Rep. Thomas Wright, a Wilmington Democrat and chair of the House Committee on Insurance and Health. Wright's support for HB 1396 is indicative of interest among black legislators, who may be influential in moving the issue up the legislative agenda.
If the right-to-health care bill does start to move, it will raise once again the question of how to get everyone covered in the health-care system. Can it be done by tinkering with the current system, or will it require moving to a single-payer setup? (See "Does 'universal' lead to 'socialism'?", page 25.)
Rep. Insko is adamant that support for her bill doesn't settle the question in favor of a single-payer system. "A lot of us believe it can be built on the current system," she says.
Likewise, Kirschenbaum and the other N.C. Committee regulars would prefer to win agreement on the principle that health care is a right before starting to debate how to achieve it. Still, most of the Committee members believe personally that a single-payer system would be the best solution. Competition, Cromartie says, "works well for some things, but I'm not sure health care can be bought and sold like groceries."
Cromartie is 87, old enough to remember well the first big burst of health-care reform in North Carolina, which took place in the 1940s. It grew out of two amazing facts from World War II. First, North Carolina had the highest rate of any state--nearly 60 percent--of potential inductees rejected for military service because of health problems. Second, young men who'd been raised in orphanages in the state, and thus given the most basic health care and nutrition, were rejected at only a 3 percent rate.
In the '40s, state leaders realized that to have a productive work force, they needed to create a statewide health-care delivery system. So they did. They appropriated enough money to put teaching hospitals on the campuses in Chapel Hill and, later, in Greenville. They spent enough to take full advantage of the Hill-Burton law, which offered federal funds for building general hospitals all around the state. And to ensure separate-but-equal access to health care, they set up public-health departments--one of the most extensive networks in the country, according to Kotch,--to serve black folks and low-income whites.
"There was a North Carolina Hospitals and Medical Care Committee set up," Cromartie remembers, "and Clarence Poe, who was the editor of the Progressive Farmer magazine, was the head of it. They set up committees in just about every community, and Kay Kyser came in and brought his friends from Hollywood to help mobilize support--and there was enthusiastic support for investing a fair amount of money in the system across the state."
There was no question, Cromartie adds, that the leaders of the movement intended it to serve everyone, not just the better-off. "They assumed everyone would get health care. But they didn't require it."
In the 50 years since then, the members of the N.C. Committee complain, a health-care system meant to serve everyone and paid for with everyone's tax dollars has been allowed to mutate so that it now leaves out many taxpayers and their families. "It's almost immoral what we're doing," Cromartie says.
That's why, to Carol Kirschenbaum, who started the committee and keeps it going, the question isn't single-payer or not. It's whether, 50 years after North Carolina started toward universal health care, we think it's still worth finishing the job. If so, she says, let's put it in our constitution and get to work on the details. If not, why not?
Information about the effort to pass HB 1396 is available at www.defendhealthcare.org, a Web site which links the N.C. Committee to nine affiliated groups in other states. Or call 402-0133.