February 18, 2013, 7:53 p.m. When I clicked my cell phone to take the call from Jim Raper, the first words I heard were, “The house next door is on fire!” I’d not yet gotten out, “Oh no, Jim, are you and Scott okay?” when Jim continued: “I’ve been telling them for years, Mike. They wouldn’t listen. And now it’s in flames and the clinic is in jeopardy.”
Then I got it: Jim wasn’t at home. He was at the clinic. He was referring to the dilapidated, two-story wooden tinderbox building adjacent to the 1917 Clinic building. For more than ten years, Jim had pleaded with city officials to condemn the building so it could be torn down. No response. Repeatedly. He went to UAB officials who said there was nothing they could do. We joked that it proved healthcare wasn’t the only screwed-up system in America.
“It’s gonna burn down, Mike, and it will take the clinic with it. It’s only a matter of time.”
The building wasn’t just adjacent to the 1917 Clinic building; it virtually abutted the clinic building, less than a foot of space between its rotting wood wall and the brick exterior of our clinic.
Dr. Bob Bourge had tried to help Jim get rid of this eyesore. A burly Cajun and UAB cardiologist, Bob was the vice chair for clinical services in the department of medicine. Hearing Jim’s concerns, Bob poked around and learned that the building was owned by a local bank that had foreclosed on it years earlier. During several meetings and phone calls with the bank, Bob encouraged them to donate the building to UAB, which would tear it down at university expense to prevent a future catastrophe. Bob pitched the idea as a win-win: The bank would rid itself of a liability and get a tax deduction, the menacing building would be gone, and UAB would pave the area to add an additional twelve to fifteen parking spaces for 1917 Clinic patients. Somehow, the deal never materialized.
During the twenty-minute drive to the clinic, all I could think was, “Jim’s prophecy came true.” I envisioned the clinic engulfed in flames. I began a mental inventory. The clinical data was safe because it was stored off site. Many of the office contents could be replaced—the equipment, the computers, the furniture. But science depended on the 400,000-plus specimens in the repository, which I had begun to collect in 1986. I thought about the letters and keepsakes from patients and families. The artwork created by patients and donated to the clinic, including the chalk pictures Brian had drawn for me while he was blind. Gone. Irreplaceable. Senseless, preventable, foreseeable loss—all of it. No one had cared enough to do what had to be done. Including me.
As I drove up, the streets surrounding the clinic were blocked off. The air stank of smoke, and I could see it billowing into the night sky, illuminated by the orange flames below. I got out of the car and headed at a trot toward the building. When a policeman blocked my path, I told him, “I work here, I need to meet with the UAB officials on the scene,” and he waved me through.
As I rounded the corner I saw Jim, staring at the scene in disbelief. Firefighters were on all sides of the burning building, pouring enormous amounts of water on it—and, to my great relief, an equal number of fire-fighters were on the roof of the clinic building, hosing it down to keep it from catching on fire. The clinic building was mostly unharmed. We had dodged the bullet.
When I went by Jim’s office the next day to see how the cleanup of the clinic was going, he turned toward me with an anguished look.
“They found three bodies in the rubble, Mike.”
Squatters had moved into the building. To escape the twenty-five-degree, wind-chilled night, they’d probably started a fire to keep warm, and it had gone out of control.
“These people are dead because we couldn’t get the job done,” he said. “They were seeking shelter they couldn’t get elsewhere. And now they’re gone.”
Our nation’s healthcare system is like the abandoned building that until recently stood next to our clinic.
In the 1950s, the building housed the office of a family physician, Dr. Rhett Barnes, who also lived in the house. I bet Dr. Barnes provided compassionate care to his patients. In the custom of the day, he probably accepted whatever payment his regular patients could provide—and if they couldn’t pay, he’d see them anyway. That was the way physicians practiced in those not-so-long-ago simpler times. There was less they could do technically—fewer drugs, simple X-rays, no CAT scans or PET scans or monoclonal antibody therapeutics. But they were their community’s healers, public servants who took pride in making house calls on stormy or freezing nights.
That bygone approach to healthcare has been abandoned as surely as the tinderbox Dr. Barnes left behind. In comparison with what once existed, the structure that remains is barely recognizable. We can see it is a building. But it is a building in serious disrepair, ready to burst into flames at any moment, taking with it all the unfortunates who seek shelter there. Is this “the finest in the world,” the pride of America? Can we even say this is consistent with our political, moral, or religious principles?
In the days after the fire, the local newspaper identified the men who died. As county residents, they would have sought care at the county indigent hospital, Cooper Green Mercy Hospital. But two and a half weeks earlier—February 1, 2013—Cooper Green had closed. Among other displaced persons were all 800 HIV patients being seen at its outpatient clinic, all of whom were transferred en masse to the 1917 Clinic patient rolls. We absorbed them into our clinic as best we could, stretching staffing and resources that were near the breaking point already.
When asked about the fire, Birmingham’s mayor was quoted as saying, “Condemning that building was on our short list in the short term.”
I suppose lawmakers in Washington will say the same thing if asked about the nation’s healthcare infrastructure when it goes up in smoke. Like the tinderbox next to our clinic, it’s a disaster waiting to happen. When it does, who will we blame for the truth: No one had cared enough to do what had to be done, including us?
If you did a person-on-the-street survey and asked, “Who has the best healthcare in the world?” I suspect most Americans would say proudly, “the United States, of course!” The answer implies that we have our healthcare act together; that people can get the healthcare they need when they need it in a cost-efficient fashion.
Under just the right circumstances, the United States does provide the best healthcare has to offer—say, for certain cancer treatments, or the latest technology to fix clogged coronary arteries. Unfortunately, these are the exceptions to the rule—and the illustrations always cited by “leaders” who love the status quo.
But in aggregate and in truth, we are far from the best. To be best would imply a persistent, reliable pattern of best outcomes for the cost, and this nation is nowhere near this. In almost every category of objective outcomes, we have worse outcomes than found in other industrialized countries.
In 2011, the National Research Council (NRC) reported that life expectancy at age fifty had been increasing at a slower pace in the United States than in other countries. The obvious question was, Why?
To answer this question, the NIH commissioned a study by the NRC and the Institute of Medicine (IOM), branches of the National Academy of Science, an independent advisory body to the federal government. In 2013, the NRC/IOM study panel released a report whose title summarizes its findings: U.S. Health in International Perspective: Shorter Lives, Poorer Health.
Perhaps I should just leave it there. The title says it all. But it’s amazing to see how the researchers arrived at their title.
“The United States spends much more money on health care than any other country. Yet Americans die sooner and experience more illness than residents in many other countries,” said their report, and they listed “elements of the U.S. health disadvantage”:
The study pointed to contributing problems such as “adverse social conditions” (read: poverty), then summarized findings in a two-sentence indictment: “The U.S. health system is highly fragmented, with weak public health and primary care components and a large uninsured population. Compared with people in other high-income countries, Americans are more likely to find care inaccessible or unaffordable and to report lapses in the quality and safety of ambulatory care.”
Astoundingly, the report also noted that most Americans “do not realize that their expensive, world-class health care system—and the very large economy that supports it—has not enabled them to keep pace with the health gains achieved by people in other high-income countries.”
If we are willing to sniff around the US healthcare system today, we can smell smoke. Victims are already being claimed. And crisis of massive, senseless, preventable, foreseeable loss is upon us. Someone needs to care enough to do what needs to be done. Including me.
After more than three decades serving and observing the US healthcare system, I see a burning need to tackle three big issues: Inequity, fragmentation, and information (or lack thereof).
The quality and quantity of Americans’ healthcare varies so dramatically, and dangerously, because of profound inequities in access to care—what I earlier described as differences in “tickets.” What ticket we have when we enter care dictates who sees us, what they are able to do, and at what speed they can do it—and, ultimately and most importantly, with what results.
When we call for a medical appointment with a new provider, we almost always will be asked what insurance we have. When we get to the medical appointment, we need evidence that we’ve told the truth: our insurance card. The Ticket. Once the ticket has been reviewed, the inequity will begin: services are chosen based on the type of ticket we have.
When we have a good ticket, we are smugly entitled to the best the provider has to offer. When we have a new symptom, we don’t think twice about calling the provider’s office to request an appointment. Our provider performs preventative tests, sees us at regular intervals, and encourages healthy lifestyle changes. We gain comfort and security from having the ticket in our pocket. We have confidence that our access to care is assured and our health outcomes are among the best in the world, so … “Bless our hearts.”
But if our ticket is for the “cheap seats,” a low-cost insurance plan, we have much less certainty of care. We think we’re probably covered should we experience a catastrophic illness or injury, but we know we have to pay out of pocket for most of our routine care. And when we’re charged for the care provided, we don’t get the deeply discounted rates the insurance plans pay; rather, we get bills for inflated, full-cost charges. God help us.
That’s what happened to many of the 800 HIV-positive patients our clinic absorbed at the closing of the Cooper Green and its HIV outpatient clinic, the St. George’s Clinic. In an agreement made in 2011 with the Ryan White program at the Health Resources and Services Administration (HRSA) and the St. George’s leadership, the UAB 1917 Clinic agreed to provide care for those patients followed at St. George’s should the day ever come when they had to close. When that day came in February 2013, the Ryan White Part C grant that covered patients at St. George’s was transferred to us to help cover the cost of outpatient HIV care because it paid part of the salaries of nurses, nurse practitioners, and physicians at the 1917 Clinic.
But for services provided outside of our clinic by other clinics in the UAB system (e.g., urology, radiology, cardiology, and the like), the grant had to be used as a quasi-insurance policy that would pay for services delivered at the Medicare/government rate. In the first two months after 1917 Clinic assumed these patients’ care, the non-Medicare-discounted charges for care they got at other clinics totaled $179,810, of which $38,755 was covered by the grant.
Where does this leave patients who do not have insurance that covers these other clinics’ outpatient services—that is, patients with the “cheap seat” tickets, or no insurance at all? They are billed at the full rate, or in this case $179,810 in aggregate. Were it not for the Ryan White program, they would have had to pay out of pocket at the top dollar rate.
An unintended consequence of this inequity is the barrier it builds between the patient and the healthcare system.
“I have this new lump in my neck—but I don’t want to see the doctor because I’d have to pay $250 just for the appointment, $550 for the lab tests, and more than $1,200 for the CT scan. I don’t have that kind of money. I’ll just wait a while; maybe the lump will go away.” This means this patient’s cancer diagnosis just got delayed by several weeks or months—time that providers might have used to save the patient’s life, had he or she come in the day they found the lump.
As of 2011, about 48 million Americans were without health insurance, according to Census Bureau data. Between 2003 and 2010, the number of Americans who were underinsured—in other words, holding the “cheap seat” tickets—rose by 80 percent to some 29 million, according to data reported by the Commonwealth Fund. Having poor or no insurance discourages these Americans from seeking preventative and early medical care—and that obviously affects the nation’s overall health outcomes. Here’s how the NRC/IOM study report described it (italics mine):
One explanation for the health disadvantage of the United States relative to other high-income countries might be deficiencies in health services. Although the United States is renowned for its leadership in biomedical research, its cutting-edge medical technology, and its hospitals and specialists, problems with ensuring Americans’ access to the system and providing quality care have been a long-standing concern of policy makers and the public (Berwick et al., 2008; Brook, 2011b; Fineberg, 2012). Higher mortality rates from diseases, and even from transportation-related injuries and homicides, may be traceable in part to failings in the health care system. The United States stands out from many other countries in not offering universal health insurance coverage.
A related, unintended consequence of the United States’ approach to healthcare delivery is the poor access to primary care services. It’s the same point author Shannon Brownlee made: While most industrialized nations have many more primary care physicians (PCPs) than specialists, in the United States we have nearly two specialists for every PCP, as well as millions of patients who are without a regular PCP.
Lack of a well-staffed, high-functioning, first-line primary care system is the main cause of what I consider the second big problem area in US healthcare today: fragmentation.
Let’s go back to our person-on-the-street survey and ask this question: “Do you think preventative care is associated with better health outcomes?” I bet almost everyone who knows the meaning of the word “preventative” would answer yes. As Americans, we say that we value primary care and its providers; we love our pediatricians and respect our internists (whom I fondly describe as “pediatricians for adults”). We appreciate the value of routine colonoscopies after age fifty, mammograms and Pap smears for women, and annual digital rectal exams to assess prostate cancer for men.
So we say we love our PCPs, our primary care physicians, but this statement rings hollow considering how we reward them. There are huge discrepancies in pay between primary care folks and specialists, particularly the specialists most associated with doing procedures (e.g., surgeons, radiologists, dermatologists). We reward for Doing, so all eight hours of, say, a surgeon’s eight hours of surgery are billable. Very billable. But we don’t reward for Not Doing, so when our much-loved PCP carefully evaluates all the possible data on our case and concludes that “watchful waiting” is the most prudent choice—after hours of deliberation, consultations with others, and an extended conversation with us—no payment results. If “follow the money” is the rule for making a career choice, head for a specialty practice.
This flow of money toward rewarding procedures skews the system in both obvious and subtle ways.
The obvious effect: Surgeons, radiologists, and dermatologists are paid substantially more per year than pediatricians, internists, and psychiatrists, often four to ten times more per year. As a result, a disproportionate number of graduating medical students choose the better-remunerated Doing specialties, which creates an overabundance of specialists and a shortage of PCPs across the country. As the NRC/IOM report puts it, “The United States has a relatively weak foundation for primary care and a shortage of family physicians.”
The subtle effect: The overspecialization of medical practice gives rise to greater fragmentation of care. Specialists are very happy to perform their particular procedure and move on to the next case. They prefer not to engage too much in the broader details of a case or the long-term view of the patient they are asked to see. They need to know only enough to (1) determine whether the procedure is indicated, (2) prepare for the procedure in a way that heads off complications, and (3) conduct the procedure for the desired outcome as safely and effectively as possible. But no more than that.
To the patient, this proceduralist is just another provider who breezes in and breezes out of their care. After the procedure, Dr. Do-er reappears only on the patient’s extensive bill as a name barely recognized, who may have performed a procedure the patient can’t even remember having. The ultimate in piecemeal care.
The NRC/IOM report did not mince words about the harm done by this approach:
In the United States, health care delivery (and financing) is deeply fragmented across thousands of health systems and payers and across government (e.g., Medicare and Medicaid) and the private sector, creating inefficiencies and coordination problems that may be less prevalent in countries with more centralized national health systems. As a result, U.S. patients do not always receive the care they need (and sometimes receive care they do not need): One study estimated that Americans receive only 50 percent of recommended health care services (McGlynn et al., 2003) … The difficulties Americans experience in accessing these services and receiving high-quality care … cannot be ignored as a potential contributor to the U.S. health disadvantage.
Thanks to the inequity and the fragmentation in the US healthcare system today, many patients lack an affordable, reliable way to get treatment. “Access to health care services, particularly in rural and frontier communities or disadvantaged urban centers, is often limited,” says the NRC/IOM report. As a result, “Many Americans rely on emergency departments for acute, chronic, and even preventive care.”
The use of emergency rooms for primary care is pervasive in the United States. But in terms of continuity of care and cost-efficiency, it is everything we do not want healthcare to be.
“Experts estimate that the cost of an (emergency room) visit for a non-urgent condition is two to five times greater than the cost of receiving care in a primary care setting for the same condition,” says a research brief by the New England Healthcare Institute. The brief reports that emergency room “overuse is on the rise across all patient populations, irrespective of age or insurance coverage”—and that the use of ERs instead of an office or clinic for primary care “is responsible for $38 billion in wasteful spending each year.”
Each time a patient accesses primary care in the ER, they are very likely to see a provider they never have seen before and never will see again. The ER provider is expected to focus solely on the primary complaint: “What brought you in to see us today?” Once that problem is addressed, the provider is done. All of us who’ve worked shifts in an emergency department know the unofficial slogan, “Treat ’em and street ’em.”
I worked in the University Hospital emergency room as the attending physician throughout my chief residency and fellowship years at UAB. It was a nice way to make extra money. All by itself, it’s an advanced course in stress. Our ER was busy. I moved from room to room like a hummingbird skitters from flower to flower, extracting the information I needed to address the primary complaint, ordering just enough tests to assure my diagnostic hunch was correct and that I wasn’t missing something big. Then I prescribed a therapy or remedy that I hoped would resolve the current problem.
In “working up” these patients, I thought very little about their home circumstances, who their families were, or whether they were likely to take the medicines I prescribed. I tried as best I could to assure they could access the medicines, frequently contacting the social worker on call to get medicines that the patients had no apparent means to buy themselves. But once I signed the paperwork that discharged them from the ER, they disappeared from my consciousness. I moved on to the next patients. I certainly hoped they would keep the appointment I ordered to help assure follow-up as they left the ER, but I really had no way to see that they did. It wasn’t my job. Even then, as a moonlighting ER physician, I was paid more than many primary care physicians. And ER docs today typically are paid more than outpatient internists and pediatricians.
From many nights in the ER, I recall one in particular. We were swamped from 7:00 p.m. until 1:00 a.m., when it got quiet. A half hour passed with no more new patients arriving; I actually got caught up on my paperwork, a very unusual circumstance. I headed for the call room to get whatever rest I could and was soundly asleep at 3:30 a.m. when I got the call: “Someone for you to see in room 7.”
I got up, threw some water on my face, and staggered down the hallway to room 7. Waiting for me was a memorably sweet, reserved eighty-one-year-old African-American woman, her hair wrapped in a scarf. She was in a wheelchair with her right foot elevated, her shoe off, and her swollen knee visible at the hemline of her skirt.
I summoned what I hoped was a convincing smile and asked, “What brings you here to see us at this time of the morning?”
“My ‘gouch’ is acting up,” she explained, pointing to the inflamed knee suffering from what is otherwise known as gout.
“How long have you had the ‘gouch’?” I asked.
“Oh, honey, for years. I can’t remember when I didn’t have it!”
“Who follows you for this?”
“Dr. Heck, the rheumatism doctor.”
“When are you supposed to see Dr. Heck again?”
“I had an appointment yesterday morning, but I didn’t keep it.”
“Why not?”
“My leg hurt too bad to go!”
So, I think to myself, your “gouch” was acting up all day and into the night, you didn’t see Dr. Heck, but you are now here in the emergency room to see me at 3:30 in the morning? The question that passed my lips was much more civil: “Ma’am, why did you come in now as opposed to seeing Dr. Heck yesterday morning? I’m guessing your leg hurt as badly then as it does now.”
“It did,” she said brightly. “But by coming in this time of day, I didn’t have to wait to see you!”
It took all of my professional training to keep from screaming.
This episode spotlights the third area where the US healthcare system falters, and it’s the most multifaceted and complex of the three: information.
Many of the most vexing problems in US healthcare today relate to information and communication, or lack of it. Among them:
Realistically, in this media-saturated age, we aren’t likely to eliminate medical misinformation. But if we help patients become smarter healthcare consumers, they can arm themselves against the propaganda. We’re still a long way from universal implementation of electronic medical records and other health information technologies that could improve care and reduce costs. While we’re waiting, patients’ best defense is to become their own advocates—to educate themselves about their conditions, their providers, and the broader system in which they obtain care. And as we approach our senior years, we should be informing someone trustworthy and younger who can become our advocate and navigator.
Consider that system in the context of US economic history. The United States long has prided itself on certain traits of a free-market economy, such as limits on government interference and prices determined by competition more than by regulation. Fans of the free-market approach want it applied to the delivery of healthcare, but there’s a fundamental flaw in their reasoning. The essential components of a market system—in which the equilibrium of supply and demand determines prices—are a seller who doesn’t have to sell and a buyer who doesn’t have to buy. In the case of healthcare, however, when the patient needs the service, he or she has to buy! When someone’s sick, they don’t have time to shop around for the best hospital or surgeon or ICU.
Here, let me be frank, at the risk of being insulting: Even if they did have time to shop, most patients in the United States would not have a clue how to go about judging the quality of healthcare services. Most patients don’t know how to access the healthcare system to get the best possible outcomes—and they don’t anticipate that if they don’t access it properly, they may wind up both a lot sicker and a lot poorer. The System doesn’t reward or incentivize patients for consuming services properly; it only punishes them for doing it improperly.
Most Americans don’t know much about how our healthcare system works and know even less about how our health insurance system works. It’s one thing not to know what your insurance plan will or won’t cover; many of us don’t know for sure until we go to use it. What I find more disturbing is that most Americans have no idea that the for-profit health insurance system, by its nature, is stacked against them.
Like any for-profit business, the health insurance company needs to make money for its shareholders. In the company’s quest to roll up profit, the patients it must cover are a liability. The more the company has to pay for services—that is, buying health for policyholders—the less it can return to shareholders. So the for-profit company “succeeds” by paying dividends to shareholders, not by paying claims to patients. Are most US policyholders mindful of this when they buy health insurance? I think not.
When consumers fail to inform themselves about the entities that control their healthcare, they play into the hands of those who profit from their ignorance.
Taken together, the inconsistent and inequitable access to care, the fragmentation of healthcare delivery, and the relative ignorance of consumers produces more chaos than care. The confusion of the chaos works to the advantage of two groups: policymakers who use the chaos to obscure the truth and payers who use the chaos to increase their profits. The disarray in the system creates cover for political untruths and payer inefficiencies while enhancing reelection for officeholders and building profits for insurers. The more chaos there is, the more politicians can obfuscate and payers can profit. Meanwhile, the public pays for the inefficiencies, picking up bigger healthcare bills than the rest of the developed world while enduring worse overall health outcomes.
How do we pay for this extra cost of care for worse outcomes? Certainly we pay in dollars. Our health insurance premiums have skyrocketed: The average cost of a family health insurance plan nearly doubled from 2002 to 2012, from about $8,000 to more than $15,700, according to a Kaiser Family Foundation report.
We also pay for our inefficient healthcare system in terms of a loss of competitiveness of American businesses as they engage in the global marketplace. In Japan, Germany, Switzerland, and Israel, businesses pay for healthcare through higher taxes; but their expenditures in extra taxes pale in comparison to what our businesses pay in insurance premiums.
US businesses, on average, are paying between $8,000 and $15,000 per employee per year for health insurance coverage. This does not include the employee contribution to the premium payment, usually $2,500 to $5,000 per employee per year. And the premium costs keep escalating annually. To try to reduce costs, some businesses have cut workers from full time to part time so the company won’t have to cover their health insurance costs; others simply eliminate the benefit. This led to further increases in the number of uninsured Americans over the last decade—and those increases helped fuel the passage of the Patient Protection and Affordable Care Act (ACA for short). We’re feeding our own failing system with new failures.
The ACA requires small businesses to pick up insurance coverage for employees they didn’t cover previously, and this poses challenges. But beyond some complaints from the small business sector, we seldom hear businesses objecting to how much they pay for insurance premiums. I often wonder: Would there be a different response if we didn’t call these payments “premiums” but rather called them “taxes”? I’m guessing many businesses would rage against that. Yet for decades, just as with taxes, massive sums have been paid—the bulk of premiums by employers, and a share by employees—to these large entities supposedly acting in our interest. When we do that with government in paying our taxes, we at least have some measure of public accountability, open records, and transparency. But we know a great deal less about the disposition of the premiums insurance companies collect, the portions spent on customers or returned to shareholders. Why has there been so little outcry about this? Because “business as usual” is easy to conduct under the cover of chaos, and the Tea Party opposes “taxes,” not “premiums.”
Another population that pays dearly for the inefficiencies of our healthcare system is medical providers and their staffs. The insurance companies, in their effort to restrain expenditures, create hurdles for providers to access procedures (e.g., CT scans, MRIs, and the like) and for patients to access medications not on their insurance plan’s preapproved list, or formulary. At the point of care, neither patients nor providers can easily know what’s allowed, preapproved, or “preferred” on the plan a particular patient has. So first, this needs to be untangled. Then, to get approval for such procedures or medications, the providers and nursing staffs must submit forms seeking prior authorizations (PAs). As documented by the study Jim Raper conducted, completing a PA costs the clinic an average of thirty minutes of a nurse practitioner’s time, or about $42 worth of uncompensated time. That is for each prescription—and in a month, we might go through dozens. Chaos on top of chaos.
The more barriers a payer creates, the more hoops providers need to go through to be paid, the less likely the payers are to make a payment to the provider. The resulting vast array of reimbursement forms, paperwork filings, and communication with multiple insurance plans is burying providers in costs for time and labor.
A study by Dante Morra, MD, and colleagues published in 2011 in the journal Health Affairs compared the costs of doing business for providers in the United States versus those in Ontario, Canada. Practices in Ontario spent $22,205 per physician per year interacting with Canada’s healthcare system versus $82,975 per physician per year spent in the United States, nearly a fourfold difference in overhead costs. When the researchers broke down where the costs were generated, they found that nursing staffs in the United States spent 20.6 hours per physician per week interacting with health plans, compared to 2.5 hours per physician per week in Ontario: a staggering eightfold difference.
The study’s conclusion: “The U.S. could save almost $27.6 billion in annual health spending if administrative costs were similar to those in Canada.”
And these extra overhead costs disproportionately affect primary care providers, making it even less desirable for America’s aspiring healers to enter that important field. For those committed physicians, nurse practitioners, nurses, and others who do choose to work in primary care, early burnout is common. And understandable.
So there is it, in detail: the inequity and fragmentation, the failures of information and communication that have given us this broken-down US healthcare system. If we don’t demand positive change, and soon, the NRC/IOM report’s title has told us what we can expect:
Shorter Lives, Poorer Health.
The ACA, or “Obamacare,” was passed in response to these inequities. Originally, it was to have a public option that would, in essence, compete against other insurance companies in health exchanges within a health insurance marketplace. The idea was to create at least some degree of open market in which patients could choose a health insurance plan where at least one option wasn’t driven by an overwhelming drive for profits or to keep a stock price high. Rather, they could choose a health plan that simply makes decisions about which services are medically necessary. For the poor and uninsured, the federal government would fund the expansion of Medicaid in each state to cover those who were at or below 133 percent of the federal poverty line. In a state like Alabama, where the current Medicaid plan covers only those who are at 20 percent of the federal poverty line, that is a lot of people. The feds would pay 100 percent of those additional costs for several years, reducing the amount of federal support slowly to 90 percent, but no less than that. It is a windfall for the states, and the poor.
But a funny (bad) thing happened on the way to passing Obamacare. The special interest lobbyists and the members of Congress who receive lots of their cash eliminated the public option because they said it was “unfair competition” to have the government compete against the private sector. Yet these same members of Congress espouse that the government can’t do much of anything well, especially healthcare. So what was there to worry about? These same members of Congress have voted, futilely, to repeal Obamacare forty times, claiming that it will bankrupt the country. But not one of them acknowledges that keeping the status quo has already put us on a path to bankruptcy. We cannot afford to pay for the chaos and unchecked costs. Obamacare is not the “answer,” but it is a critical first step toward gaining control of an out-of-control system. And the folks who are vehemently opposed to it have no solutions, just objections. The irony of all of this: The premise of Obamacare was originally proposed by the Heritage Foundation, a right-wing think tank, as a response to the Clinton’s administration push for healthcare reform. These tenets were implemented in Massachusetts under Governor Mitt Romney’s leadership, where by most every metric, it has been successful in assuring nearly full (97 percent) access to care of all citizens in the state while slowing the rise of healthcare costs dramatically, especially when compared to other states in the nation. A bad idea that won’t work? C’mon. What we had pre-Obamacare is much, much worse. Why on earth would we want to return to that?
In fall 2009, my friend and 1917 Clinic chaplain Malcolm Marler was asked to become director of the UAB Department of Pastoral Care, which provides chaplain services for the university’s medical system. Nobody could have been better suited to the job. Thank goodness this move kept Malcolm around so I still can catch the occasional lunch or workout date with him, and I still can lean on his wisdom.
I always try to read what Malcolm writes because it is, like him, insightful and useful and often inspiring. He’ll start out recounting some everyday occurrence, and then, like magic, he’s produced a full-fledged parable.
One of Malcolm’s stories gives the best description I’ve ever heard for what patients really want to get out of healthcare. It also says a lot about why providers go into this work. It’s a story from his first month at the 1917 Clinic, when he counseled his first HIV-positive patient.
A clinic colleague said to me, “Malcolm, can you come talk to this patient, she just found out she’s positive and she’s really sobbing.” I thought to myself, What do they want me to do? I walked into the room and sat down. The woman, whose name was Robin, kept crying. Then finally she looked up and said, “Who are you?” I said, “My name’s Malcolm, I’m one of the chaplains here, I just heard you were having a hard time and thought I’d come in and be with you.” We talked a little; I found out she was a Baptist, as I was raised. And then as she was talking she stopped midsentence and she said, “I want to know the answer to three questions. I want to know, Does God still love me? Will anybody ever love me again? And will anybody ever hug me again?”
I said, “Stand up, Robin,” and I walked over and hugged her. Generally there’s a protocol when hugging someone you don’t know well—ONE one thousand, TWO one thousand, THREE one thousand and then you break, you don’t just keep hugging. But I pulled her close and hugged her and she just cried so hard on my shoulder. And I told her, “You can come here and get a hug any day, if you have an appointment or not.” So that answered her third question.
As for her first question, I told her, “Robin, because of your faith background, you know what grace means. It’s forgiveness, it’s unmerited love given freely, just poured out. So there’s not anything you can do that God will stop loving you. And as for other people loving you, I think there’s going to be a way soon for us to introduce you to people who will love you.” That was around the time we started creating the support teams matching people from area churches with HIV-positive patients. And we did link her up with a support team, people who became close friends with her and did incredible things like having a Christmas party in her home when she was too ill to get out.
Robin was the first person who taught me that everybody, deep down, wants to know the same things. It’s true not only for people with HIV but for anybody with a significant health care issue. They want to know, is there something larger than me in all this, a God who will love me? Second, they want to know, who are the people around me who are going to love me and care for me during this time? And third, they want to know, does being ill mean I have to give up everything, including somebody just to hold me? Those are the universal issues that people with any illness deal with, at one time or another.
Malcolm has captured what brings most of us to the role of “provider”: our desire to make a positive difference in the individuals and communities around us. That’s really all there is. It doesn’t cost anything for providers to listen, to care, and to heal through acts of kindness. The human touch is no less vital today than it was in the 1920s when doctors made house calls and had little to offer except hand-holding and comfort care, much like it was for me when I first started taking care of HIV patients in the 1980s.
Because the reality of why we came is clear and simple, our constant frustration and sometimes fury at a healthcare system that blocks healing and punishes patients (and us) is equally clear and simple.
In the case of HIV, can any of us imagine what it would have been like had the Ryan White CARE Act not come along when it did in 1990? When it was first passed, we had very little to offer HIV patients and their families. Ryan White was designed to help patients access care so they could access AZT, a medication that would at least buy time—and when that failed, they could die with dignity.
As scientific advances exploded through the 1990s, the Ryan White program assured access to care and access to life-saving medications. Among HIV-positive patients in the United States, fully 40 percent are uninsured and another 20 percent are underinsured—so the Ryan White program made sure that every patient was taken care of. To those with no other way to access care, Ryan White has been an absolute lifeline. Gratitude abounds.
But it begs the question: Why did we have to create such a solution to get one group of patients care?
Isn’t something wrong with our system if we had to “carve out” an exceptional program just to provide what’s right and humane for patients and their families? And then, of course, we arrive at the larger question: What about all the other patients and families with other disorders who deserve Ryan White-caliber programs but for whom no such program exists?
The US healthcare system is an abandoned tinderwood building full of disadvantaged inhabitants seeking shelter from the cold and chaos. Healthcare should be a warming blanket, not a burning building.
It’s the chaos that keeps us from listening when Jim Raper warns, “It’s gonna burn.”
The chaos keeps us from believing that it’s our problem, our lives, our parents, and our children who will be sacrificed. It enables politicians to say outlandish things taught to them by lobbyists and pollsters. It keeps profits rolling and the poor coming through the doors of the ER.
Who can change The System? We can. But we need to stop yelling at each other and start listening to the facts. The facts are our friends. They show us where we are, how we got here, and how we can get out.