If you have AIDS, come see me. I know AIDS and the heroes who’ve won so many battles against it.
I could make a very long list of topics on which I’m not an expert. My wife, Amy, would probably have an even longer list, starting with childbirth. But, for starters, I’m not an expert on US or international politics or economics. I’m not an expert on the internal workings of the pharmaceutical and insurance industries. I’m not an expert on every political, economic, and corporate influence that has shaped US healthcare policy. What shocks me is how much time I’ve devoted to what is not my field of expertise.
I’ve backed into each of these fields. In league with my patients and colleagues, I one day found myself taken up by The System. We may not be experts on the entities that control US healthcare, but we are stakeholders in their decisions. We may not be experts on The System’s inner workings, but we’re painfully familiar with their consequences. And I think that makes us, if not experts, at least reliable witnesses.
I’ve seen how the US healthcare system confuses patients like Jenny and bankrupts patients like Brian and his partner Joe, how it frustrates genius providers like Jim Raper and drives other gifted healers completely out of the field. My family, my patients, and my colleagues have combined to give me urgency, sometimes to the point of rage.
Meanwhile, my expertise on healthcare reform lies mostly in knowing where it’s most needed and why. That’s the vantage from which I look for worthwhile programs we might emulate, new ideas we might try—and reasons for optimism and hope.
The US healthcare system can boast of some phenomenal successes in HIV/AIDS medicine and overall. These successes are vitally important for what they can teach us. They also are important because they encourage us to persevere when we hit disappointments and failures.
Patricia is a success story, pure and simple. When she came to the clinic in late 2011, she had advanced AIDS, HIV dementia, and a parasitic infection called toxoplasmosis. Though Patricia is about five foot five, she weighed only seventy pounds by the time her mother brought her in. When Jim Raper lifted her onto the exam table, she was curled in the fetal position and drooling on herself.
Today Patricia is alert and active, completely recovered from the dementia. She weighs 140 pounds and looks like a fashion model: gorgeous, smiling, and happy! She recovered because we got to her in time with a regimen of drugs we did not have to save so many others before her. Patricia’s experience on these drugs will yield data we can use to make the next rounds of drugs even better and save more patients in the future.
It’s easy to appreciate the kind of success we’re having with Patricia. It’s harder to know what to say about the success we had with my friend Granger.
I wish I had known Granger growing up. He was born in Alabama exactly six days before I was born in Louisville. Like me, he was a storyteller: While I was at Tulane making movies, he was at Florida State University writing, producing a slim book of short stories as his master’s thesis.
Though he was a talented writer and teacher, Granger really made his name in another realm: antiques and interior design. People were enchanted by his style, his wicked sense of humor, and what one friend called his “Southern Gothic charm.” If you asked me to describe him, I’d tell you he was one of the most angelic human beings I’ve ever met, incredibly sweet and kind.
In August 1999, Tom Blount called me. He said his close friend Granger had what sounded like pneumocystis pneumonia (PCP), and asked if I could see him. When Granger arrived at the clinic, he appeared to have not only PCP but a small Kaposi’s sarcoma (KS) lesion in his throat. I admitted him to the hospital.
Granger told me he was shocked because he believed he had been careful in his love life. “I just never thought it would happen to me,” I remember him saying. He was scared about how his father would take the news and convinced he didn’t have long to live. I talked to him about how HIV was rapidly becoming a manageable condition and how, if we all played our cards right, he should live to be an old man.
We got Granger into care immediately. George Shaw, then the 1917 Clinic oncologist, quickly brought his KS under control. Granger bounced back from the PCP, and thanks to a new antiretroviral regimen he got through one of our drug trials, his HIV was rapidly brought down to undetectable levels. To Granger’s surprise, his father took the news of his diagnosis well, and was very accepting and supportive. From then on, I saw the fighter in Granger, the man determined to live long and joyfully.
Granger and I hit it off right from the start, as much as I had with any patient. He was an immediately likeable guy, a tall, husky man with a winning smile and an infectious laugh. Once we got his viral load down, he enjoyed generally good health, thriving in the design world, running an antiques store, and enjoying getaways with his dog at his North Carolina cabin.
For years before I knew him, Granger had been a smoker. He quit when he got the HIV diagnosis, but he started again in 2004. He smoked off and on until he had a heart attack in 2009, when he swore off tobacco again. Then, early in 2011, Granger started experiencing what he called “funny sensations” in his chest. A chest CT scan revealed a large mass in his right lung that impinged his esophagus. Tests showed that of the two major types of lung cancer, small-cell and non-small-cell, Granger had the former—the more aggressive type in which cancer cells multiply rapidly and often have spread widely through the body before causing any symptoms.
Granger responded extremely well to the initial rounds of chemotherapy. The mass all but disappeared. When the chemo caused him to lose his dark brown hair, Granger’s defiant reaction was to buy a cheeky blond wig. During one of his visits, we took “before and after” photos: blond Granger wearing the wig, and then bald Granger laughing at me trying it on.
Early in 2012, a surveillance MRI scan of Granger’s head revealed multiple metastatic lesions throughout his brain. Radiation treatment and some more chemotherapy had virtually no effect. We had thrown everything we had at his cancer. We were hungry hunters who’d found our prey, and we were out of bullets.
In 1999 when I met him, Granger was determined to stay alive. In spring 2012, riddled with cancer, he was just as determined. I was the specialist for his HIV, not his cancer—but when he came back to the hospital in June with intractable nausea and vomiting, I knew I needed to be the one to tell him where he stood.
During that visit, I sat with Granger and had a wonderful conversation. He thanked me for all I had done, then said he wanted to make a confession. Though he’d rallied after his diagnosis and shown a brave, determined face to the world, Granger said, he continued to feel shame that he had HIV. Intellectually he knew he had done nothing wrong and was just a patient with a disease. But somehow, perhaps because of his proper southern upbringing, he still felt embarrassment. He had never told anyone this, he said.
I thanked Granger for confiding in me and reassured him that as opposed to doing anything wrong, he had done everything right. He got diagnosed a bit late, but as soon as he knew his status, he sought treatment, took his medicines well, and got control of the virus. Even though it was hard for him initially, he told his loved ones. That gave him precious years of an honest, supportive relationship with his father, who’d died in 2003, and many others.
We then moved on to the hardest topic: his impending death. Granger admitted he didn’t know quite how to behave with loved ones. He had been downplaying his condition and trying not to talk about his terminal prognosis in hopes of sparing them pain. He was behaving as he always had, trying to take care of others.
I listened to my friend until I saw him reach into the hospital nightstand, pull out one of his washcloths, and hand it to me to wipe my tears.
When I could compose myself, I told Granger what I thought. He owed it to the ones he loved most to tell them the end was near. He should not soften the news but address it head on. He should reminisce and share stories, laugh and cry. He should speak openly of his coming death so he and his loved ones could grieve together—because very soon, his loved ones would have to grieve without him.
“But I was always told not to quit!” Granger said, his voice breaking.
“Granger, you’re not quitting. We all know we’re going to die. And when the time comes, if we can embrace our situation, we can make the most of it not only for ourselves but for those we love.” At this point, tears were streaming down Granger’s face. I handed back his washcloth and struggled to finish what I wanted to say.
“Get on the phone and tell people. Let them visit. Tell them you love them, and let them tell you. If you can do this, you will not only leave them memories of you; you’ll help them, when their time comes, to have a model of how to go in peace. If you can do that, you’ll be an angel to them.”
By now, we were smiling. We shared a few “I love yous,” a long hug, and I headed to the next patient.
A few days later, I visited Granger just before he went home for the last time. Before I could ask how he was doing he broke into a huge smile and said, “THANK YOU, thank you, thank you! Your advice to tell people the end was near was so liberating! I’ve had some of the best conversations with so many people. Sure, we cried a lot. But it was so healing, for both them and me.”
I asked Granger if he’d let me include his story when I told mine, and he said he’d be honored. Then, because Granger had no illusions about what was coming, I made a request I could not make to other cherished patients: to take a final photograph. In the picture, the veins stand out on Granger’s hollow temples and his cheeks are lined. But his eyes are shining and his smile is, as it ever was, angelic. It’s a candid shot of soul mates, two members of the Band of Brothers who’d fought the war together and won. We knew what was coming, but we had tasted victory.
I loved Granger no less than any other longtime patients I’ve lost, but I’ve grieved him differently.
Even if there were such a thing as a perfect medical community, it still would know death. The victory for Granger was in cheating death of one more HIV/AIDS patient. He lived a dozen years longer than he expected and twice as long as many HIV patients before him. He didn’t die of AIDS but of something ordinary—sadly, the number one cause of US cancer deaths. The evil virus had stalked Granger, but it could not run him down.
I loved Granger, and I miss him. He surely died too young, at age fifty-six, on June 22, 2012. But this mattered to Granger, and it matters to me: He didn’t die of AIDS.
Reflecting on Patricia’s and Granger’s stories, I’m struck by the good things that have happened for our patients over the past twenty-five years. Scientific breakthroughs allowed us to rein in HIV/AIDS, and with the help of the Ryan White program, we’ve restored and maintained the health of hundreds of thousands of Americans.
It’s worth remembering that the Ryan White program was designed by Congress specifically to close a gap. Congress knew that the majority of patients with HIV were poor, lacked health insurance, and generally were disenfranchised from the existing healthcare system. And members knew that unless something closed that gap between what the existing system provided and what the patients needed, a couple of things would happen: (1) infected people would die unnecessarily, and (2) infected people would spread the virus to others at a higher rate. I was appalled at how many lawmakers dreaded the second consequence and appeared willing to accept the first.
But motivations aside, the Ryan White CARE Act was passed in 1990, and it has done its job exceedingly well. So much so that, as I noted earlier, a 2012 study of people followed at a Johns Hopkins University clinic could not demonstrate any differences in health outcomes (including mortality rates) between those with financial means and those with incomes below 100 percent of the federal poverty rate. This is remarkable because in almost every other disease state, poor patients in the United States have much worse outcomes in every category. Not so with HIV/AIDS, because Ryan White funding significantly closed that healthcare gap between the Haves and the Have Nots who have HIV.
Everyone within the sound of my voice (or sight of this book) knows my belief that in our broken healthcare delivery system, the “safety net” that keeps patients from falling through the cracks is made up solely of healthcare workers who give a damn. In the case of HIV patients, those tenacious workers were paid and equipped in large part through the Ryan White program. I shudder to think what would have become of those patients if Ryan White had not been created. And I lose sleep—particularly when it’s budget reauthorization season on Capitol Hill—thinking about what would happen if Ryan White went away.
While this is my particular nightmare, here’s what keeps other healthcare professionals awake at night: They have no Ryan White equivalent. They have no supplemental, gap-closing program for whatever disease has their attention as HIV/AIDS has mine. They have no dedicated source of additional funding to do for their disadvantaged patients what the current healthcare system fails to do.
Actually, no other country in the industrialized world has a Ryan White program. Why is that? Because they don’t need it. Ouch.
All the patients with HIV in Japan, Switzerland, Australia, France, Italy, Canada, Spain, Sweden, Norway, Austria, Netherlands, Finland, Portugal, Germany, United Kingdom, and Denmark, have full access to care without a Ryan White-like program. That’s because each of these countries has a system of universal healthcare that covers all of their citizens in a coherent, reliable fashion. And compared to the US system, those countries’ systems deliver healthcare outcomes that are better by almost every measure and accomplished at about half the cost, according to the 2013 NRC/IOM report.
If you do not find the previous paragraph disgusting, try reading it again.
As I travel around the world to attend different meetings, I make a point to ask my physician colleagues as well as folks I meet on the street, “What do you think of your healthcare system?” Almost universally in the nations I listed above, both the providers and the citizens register approval, with responses ranging from “It’s good” to “I love it.” In the United States when I ask the same question, I find almost no one expressing such satisfaction—and plenty of people saying they’re afraid even to seek treatment because they can’t afford it. I hear these contradictions: Our system is best, and I am terrified. Elsewhere in the developed world, I don’t hear heartbreaking accounts of people declaring bankruptcy because of a medical bill. But in the US, two-thirds of all personal bankruptcies are associated with healthcare debt and three-fourths of these by people who have health insurance.
In spring 2013, a blog post by Ezra Klein of the Washington Post caught my eye with this bold headline: “21 graphs that show America’s healthcare prices are ludicrous.” As Klein reported, “Every year, the International Federation of Health Plans—a global insurance trade association that includes more than 100 insurers in 25 countries—releases survey data showing the prices that insurers are actually paying for different drugs, devices, and medical services in different countries. And every year, the data is shocking.”
Klein then unfurled a long swath of twenty-one bar graphs showing dramatically higher costs for frequently needed drugs and procedures in the United States than literally anywhere else in 2012. For most countries, each cost was listed as a fixed amount, while for the US it was listed as a range. This is necessary, Klein explained, because “In other countries, prices are set centrally and most everyone, no matter their region or insurance arrangement, pays pretty close to the same amount. In the United States, each insurer negotiates its own prices, and different insurers end up paying wildly different amounts.” Then he let the graphs tell the story. Comparing the average and the highest costs in the United States with the next-closest nation in terms of cost:
“This is the fundamental fact of American healthcare: We pay much, much more than other countries do for the exact same things,” Klein concluded.
Despite all these cost and access issues I’ve described, many US leaders continue to call America’s system the best in the world and claim we have nothing to learn from other nations’ healthcare models. I find that mind-boggling—denial of the first order. If they actually believe this, they should be disqualified from leadership. In fact, if they don’t believe it and say it anyway, they should also be disqualified.
For help in facing some hard truths about the future of healthcare, I turn again to my colleague Dr. Milton Weinstein, the Harvard School of Public Health cost-effectiveness expert.
In a 2001 essay he wrote for the Journal of Medical ethics,* Professor Weinstein explored the unalterable reality that there is a limit on medical resources available for the use of Earth’s inhabitants. His essay threaded together two intriguing earlier works: biologist Garrett Hardin’s landmark 1968 article about resource allocation, “The Tragedy of the Commons,” and a later New England Journal of Medicine article in which physician Howard Hiatt discussed healthcare resource allocation using Hardin’s construct—a common pasture where, if herdsmen took no control over access, some animals ate their fill while others starved to death as the pasture was overgrazed and destroyed.
“Although Hardin’s essay was written in the context of population growth, Hiatt saw its relevance to health care,” Professor Weinstein wrote. “Physicians, each acting in the best interests of their own patients, collectively reach the limits of health care resources, with the result that access to care and quality of care are compromised.
There is no obvious ethical solution to the problem of rationing the medical commons, because any solution involves comparisons between the value of health services provided to different patients with different conditions. Nonetheless, the remedy must lie in some form of collective action: physicians, like the herdsmen in Hardin’s parable, can save the commons only by adhering to a set of mutually acceptable covenants which govern and limit their use of the shared resource.
If health care were “free,” there would be no need to limit its use. Health care is not “free” because the use of resources (physician time, hospital beds, health care budgets) by some precludes the use of those resources by others. The overall result of failing to adopt covenants that lead to restrained use of resources by well-meaning physicians is unacceptable.
If a society mandates universal access to health care, and if all physicians provide their patients with the most beneficial treatments available, then the cost of health care will be unacceptably high to their patients, either as taxpayers, payers of insurance premiums, at the point of care, or in combination. The alternatives are compromises, either with the principle of universal access, or with the principle of unlimited care.
Professor Weinstein is right: Whether we like it or not, it is inevitable that healthcare will have to be rationed because no system can afford to give every patient every desired service at every point in care. Today in Europe, such rationing is done through careful assessments of outcomes versus costs, asking the question, “Are we getting the benefit we paid for?” In the United States, we now have a sort of haphazard, de facto rationing that allots services based on who can afford them; those who have money get plenty, those who lack money often go without. But every time we attempt a national conversation about practical, moral ways to ration care, some demagogue starts shouting about “big-government medicine,” “playing God,” or “death panels”—and the noise helps build the chaos so that fear prevents any reasoned discourse.
In his essay, Professor Weinstein envisions a system in which physicians help develop guidelines to allocate available resources according to the hierarchy of needs in their patient population, medical effectiveness, and cost-effectiveness. In such a system, he writes, physicians would operate “like parents taking care of their several children” in a big family—making “decisions about what clothing to buy for each, which ones to send to sports camp, which to send to college … in a caring, compassionate way.” Having physicians help devise standards for rationing would allow them to “continue to exercise their roles as agents and advocates for patients,” Professor Weinstein writes.
Reasonable? Of course. But to date, no key player in the US healthcare system has called for a serious, transparent, public discussion of rationing. We fear those who will scream more than we love the truth. It’s a classic example of what Professor Weinstein calls “our country’s avoidance of unpleasant truths” when it comes to the future of healthcare.
If we can’t tackle the tough questions, how will we ever cure what ails the US healthcare system? I don’t know.
Many ambitious attempts at healthcare reform have been floated in recent decades. The Patient Protection Affordable Care Act (“Obamacare”) became the law of the land in 2010. Though it remains under steady attack by those who would repeal or defund it completely or in part, implementation of the law’s provisions moved ahead. States and the federal government are gaining experience with the “insurance exchanges” the ACA requires. It’s an element of The System that need not add to chaos, if we’re willing to understand it.
One thoughtful explanation, drafted by an MD, appeared in a 2012 column in the international online newsweekly TheWeek.com and read, in part:
Originally a Republican idea, the state insurance exchanges mandated under the Affordable Care Act (ACA) will offer a menu of private insurance plans to pick and choose from, all with a required set of minimum benefits, to those without employer-sponsored health insurance. These exchanges are expected to bring health insurance to an additional 16 million Americans. Unlike the Medicaid expansion, these Americans will gain private insurance, and can choose the plan that’s right for them.
The exchanges should facilitate competition among private insurers as they design new benefit packages and cut prices to stay ahead of the game. While I’m slow to favor a mandate, these exchanges will offer those who can benefit from insurance a broad array of tailored options and varying prices that should help them find it. Helping more Americans find and compare the private insurance they need and can afford should be an easy principle both political parties agree on.
The MD who wrote this? Dr. William H. Frist, who is not only a nationally known heart transplant surgeon, but also the former Republican Majority Leader of the US Senate. I’ve certainly questioned some of Bill Frist’s actions, especially in 2005 in the Terri Schiavo case, where he tried to insert the will of the federal government into a personal health decision about withdrawing support from an individual in a persistent vegetative state. But I appreciate his stand on this issue. While many others in his party were demonizing the exchanges mandated by Obamacare, Frist was hailing them as “the solution. They represent the federalist ideal of states as ‘laboratories for democracy’ … 50 states each designing a model that is right for them … I love the diversity and the innovation.”
Frist’s bottom line: “With soaring health care costs one of, if not the most, dangerous threats to America’s greatness, a new round of national health care experimentation is exactly what we need … I urge everyone—citizens, small businesses, health industry stakeholders, churches, large employers—to actively participate in shaping your exchange so that it reflects your state’s values, economy, and common sense.” Sounds supremely logical, doesn’t it? Like everyone who resides in a neighborhood getting together to fashion a workable delivery system for something they all need.
I appreciate the intent of the exchanges and other provisions of the ACA. It’s a necessary first step in longer-term healthcare reform, but it is only a first step because a fundamental problem remains. The problem isn’t with this or that kind of insurance, but with the concept of making Americans’ healthcare reliant on insurance at all.
Here’s why I say that. Typically when Americans buy insurance, we do so hoping we never will have to use it. With most kinds of insurance, there’s a high probability that we won’t. How many of us ever will have to use our homeowner’s insurance to rebuild our house after a fire? Our liability insurance to protect us against a lawsuit from a serious car accident? Our term life insurance because a family breadwinner died before accumulating enough wealth to support the young family left behind? You get the idea.
But here’s where health insurance is different from those other types: There’s no real question of whether any given American will use his or her health insurance; the only question is when. If we are lucky enough to have health insurance, we know we will use it. Period. We will use it throughout the year when someone in our family has an illness or complaint. We will use it each year to help cover expenses associated with a wellness visit (if we have a good plan). We will use it to pay for screening laboratory tests, mammography, or colonoscopy to pick up early cancer.
And in many cases, if we don’t have health insurance, we won’t seek care. The last time I was on service at University Hospital, seeing general medicine patients, I didn’t even have to look at their charts to tell who had insurance and who didn’t. I simply looked at how they presented, and asked the last time they saw a provider—and in 100 percent of the cases, the ones who had put off seeking care and had arrived in the worst condition were the ones who lacked insurance.
To maintain health, we need healthcare. To access healthcare, we need to cover its costs. To cover healthcare costs in the existing system, most of us have counted on insurance. And about 50 million Americans do not have insurance to count on.
What if there were another way? Imagine this: a comprehensive healthcare service system that is not reliant on individuals’ insurance payments. We eliminate the concept of “fee-for-service” and instead have the system available for use on an as-needed basis. Ideally, such a system will be self-contained and vertically integrated, where the most expensive care (e.g., hospital care) shares cost expenditures with outpatient care and promotion of wellness, in the true sense of the word. The critical component of such a system is that all the financial resources will be placed in a central pool and distributed based on utilization.
The system’s metrics will enable its providers to assess the medical effectiveness and cost-effectiveness of an intervention, to determine when it is likely to work or when it is futile. Providers will be in charge of establishing rules for expenditures and interventions: which drugs will be on formulary, what criteria are used for approval of an MRI or CT scan, and when is it appropriate to discharge a patient from an ICU bed owing to futility. Those systems that use their resources most judiciously, in the most cost-effective manner, will be able to provide more services to the patients who subscribe to their system.
In such a system, charges for participation will be based on a per-patient fee structure. They will be discounted for people with less means. They also will be discounted for people who engage in healthy lifestyles. The patient who smokes, is obese, or doesn’t take medicines as directed would pay more. The patient who doesn’t smoke, has a body mass index below 25 (nonobese), exercises regularly, take medicines as directed, and shows up for screening exams when indicated (annual physical, mammography, colonoscopy, etc.) would have annual payments discounted.
Is such a system realistic? Can it exist? Absolutely. Absolutely.
In the United States today, the Kaiser Permanente (KP) system is designed very much like this. KP owns (or has control over) its own hospitals, clinics, pharmacies, laboratories, and imaging facilities. Providers are employees of KP and are paid salaries. They are held to performance standards to assure cost-efficient delivery of healthcare based on quality metrics; those who perform well are rewarded, those who don’t, aren’t. The performance standards are determined with input and buy-in from the providers themselves. The providers also have input on the drugs selected for formulary; generic drugs are used as often as possible when appropriate, and formulary drugs’ prices are negotiated with pharmaceutical manufacturers to assure best pricing.
KP patients, who are called “members,” buy into the concept as well. As I write this, KP serves more than nine million members in nine states and the District of Columbia. These members understand they are part of a contained system with finite resources. And yet, they have access to all the best US healthcare has to offer: sophisticated cancer therapies, solid organ transplants, and bone marrow transplants. Use of emergency room services is reserved for true emergencies; urgent, drop-in visits for new illnesses are funneled back to KP outpatient clinics whenever possible.
The system has a single payer. This eliminates the need to keep track of which insurance plan each patient has or to fill out various plans’ forms. It also eliminates uncertainty regarding which drugs are on formulary and which aren’t. If some divergence from a treatment routine requires a prior authorization, it’s handled within the KP system according to mutually agreed upon guidelines, and it’s processed not by some foreign “them” but by a friendly “us.”
KP is not a health insurance system; it is a comprehensive health system. KP provides healthcare and wellness services that compare very favorably to the offerings of most insurance plans, but without the down sides of those plans such as restrictions on benefits and uncertainties regarding coverage in times of need.
In short, KP works remarkably well. If you’ll forgive a scientist this relatively unscientific statement: I can tell that KP works because it’s about the only place I know in the United States where the primary care providers are happy! Any organization that satisfies PCPs—arguably the most overworked, underpaid, and essential players in medicine today—must be doing something right.
Another place where primary care providers are mostly happy is “at the VA”—the Veterans Affairs medical system established in 1930 by President Hoover. Before the VA was established, it was not uncommon for a soldier who was injured in battle to come home from war with a disabling condition, yet not be able to receive medical care after leaving the service. Creation of the VA system corrected that injustice.
After World War II, VA eligibility was expanded to include all honorably discharged veterans regardless of whether they had a service-connected disability (although those with service-connected disabilities are prioritized above those with non-service-connected illnesses). The availability of the VA for our nation’s veterans helps make up for the gaps in access to care within the US healthcare system and provides a respite from the chaos there. My dad was an example of someone who had both Medicare and a supplemental Blue Cross policy—but when those other systems failed him in terms of obtaining a medication for pulmonary artery hypertension, the VA came through.
So the VA is a refuge for veterans, as Ryan White-funded programs are a refuge for HIV/AIDS patients. But they are needed primarily as work-arounds, to compensate for the failures of our existing healthcare system.
Instead of using programs like this as stopgaps, why not take what’s working about them and make this the model for all healthcare delivery in America? Create a system with consistently applied rules of engagement that enable coordinated, cost-efficient care delivery of the kind that exists in the VA and KP and that are clearly why providers are happier there than in the wider system. Create the self-contained, vertically integrated, comprehensive systems that can coordinate services and purchases of expensive technologies and can establish centers of excellence for provision of expensive interventions such as transplants and open heart surgery. These operate in the VA and KP and eliminate much of the redundancy and excess costs that plague the wider system.
Bringing down costs remains a goal of former Senator Bill Frist, MD, as evidenced by his recent service on the National Commission on Physician Payment Reform, a study panel convened by the Society of General Internal Medicine. In a 2013 New England Journal of Medicine article*, Frist and fellow commission member Steve Schroeder, MD, presented the panel’s enlightened recommendations to eliminate our archaic and costly fee-for-service model of healthcare delivery. Among their recommendations:
The commissioners’ bottom line: The nation will not get a handle on its healthcare expenditures without changing the ways providers are paid and incentivized. The authors acknowledge that the transition away from feefor-service will not happen quickly and that the transition will be painful, to put it mildly. But they believe that new models and systems of care delivery must be focused on rewarding those whose practices fill gaps and provide care to patient populations that have more complex diseases and that are otherwise underserved.
I applaud Dr. Frist and his fellow panelists. But I wonder what prevented him from proposing such sweeping reforms while he was one of the most powerful people in the US Senate? I suspect the answer is, at least in part, politics.
Elected leaders live in fear of rousing the ire of voting blocs that could swing the next election. Depending on what positions incumbent politicians take, well-heeled interest groups can spend barrels of money trying to defeat them—or pour that money into the incumbents’ reelection efforts. Health-related groups gave more than a quarter of a billion dollars in the 2011–2012 federal election cycle, making them among the top contributors, according to Federal Election Commission data. Bill Frist might have felt the fundraising pressures less than some lawmakers: He’s personally wealthy, and he entered the Senate in 1994 promising to leave after two terms, which he did. But any lawmaker who wants to remain in office would think twice about bucking a big-money interest’s agenda—even to promote reforms that are certainly in the public’s best interest and may have popular support. Chaos may prevent clarity, but money can prevent reelection.
Ultimately, here’s where we end up. The insurance, pharma, and other health-related industries will resist reforms to the US healthcare system that are not in their own interests. Between the special-interest pressures and the partisan warfare, elected officials may make some attempts at reform (e.g., the ACA)—but probably not anything truly revolutionary. If choices about reform are left to these forces, we will have ceded control over our health to people whose primary motivations are corporate profit and political survival, not wellness and care.
But why would we cede this control? There are far more of us than there are of them. According to 2011 and 2012 data from the Kaiser Family Foundation’s statehealthfacts.org website, there are nearly 835,000 active physicians in the United States, along with more than 180,000 nurse practitioners. There are more than 2.7 million registered nurses, and overall about 12 million people employed in some aspect of healthcare. As for the number of US healthcare consumers, it changes as the population clock ticks. But it’s give or take 316 million people, because at some point in our lives, it’s every one of us. If most providers believe the system should be changed and many consumers believe the system must be changed, then how can we not prevail? The answer: chaos. Partisan attacks and political rallies generate mind-numbing noise. What’s reported, every hour on the hour, is the sound of noise, not critical if quiet facts.
We will only win if we can mobilize to demand what we need, want, and deserve—truly, the best healthcare system in the world.
Here are eight things we should do to work toward that goal:
I can recite this list of patient-centered, cost-conscious changes until I’m blue in the face. But none of it will go anywhere unless we, providers and patients, get behind it and push. Once we are resolved for change, we need to make our voices heard. On this issue, many of us have avoided engaging with government, considering it at least dysfunctional and obviously ineffective and, at worst, evil.
I agree that at times, government can be dysfunctional and inefficient. But I never would brand it as evil, because I’ve seen it do so much good. Through my work as a researcher, I have seen impressive, even noble efforts at the NIH, the CDC, the HRSA, and the FDA. I see Tony Fauci, who could be a president at any college or university in the nation, stay at his post at NIH’s National Institute of Allergy and Infectious Diseases to make sure research into HIV and other infectious and rheumatologic diseases stays on course. Others at the NIH, CDC, and FDA with whom I have worked also could be making much more money (with fewer headaches) at an academic institution, in private practice, or with industry, but made the conscious decision to stay in government to make a difference.
In my dealings in healthcare policy, I’ve worked with brilliant and committed staffers at the Office of Management and Budget and on Capitol Hill. Like most Americans, I have flown on planes protected by the FAA, been shielded against security threats by the Departments of Defense and Homeland Security, and enjoyed trips to national treasures preserved by the Park Service. Within each of these government entities, where some might see bureaucrats, I see heroes: Americans serving their country, often with some degree of personal sacrifice.
So when I hear people like tax foe Grover Norquist—who famously said he’d like to shrink the government down to the size where he could drown it in a bathtub—I want to ask: Just who does he think “the government” is? It’s us! It’s our duty-bound representatives, put in office by our votes and supported by our tax dollars—and so by extension it’s all of us, our relatives and coworkers and neighbors.
That fact was driven home for me in late November 2012, when I was invited to the White House observance of World AIDS Day. It was heady stuff, submitting my information for security clearance and getting instructions on where to enter the White House complex. The event was full of Washington luminaries. I was asked to speak about HIV treatment and care on a panel moderated by Rosie Perez, a member of the Presidential Advisory Council on HIV/AIDS and a television and movie star.
I was feeling a little out of place in the halls of power—until I met my fellow panelists. An AIDS foundation president. A leader of the National Black Gay Men’s Advocacy Coalition. A young woman living with HIV. And me, an Alabama doctor. A rainbow of people from varied walks of life, gathered to do what proud Americans do: to serve in whatever way could help our nation. We weren’t voted into doing it. We weren’t lobbied into doing it. We were there because each of us, playing our part, is the essence of government in a representative democracy.
That’s how it was in 1787, at the Constitutional Convention—a gathering of Continental Congress members and lawyers, to be sure, but also of planters and soldiers, educators and ministers and merchants. All of them helped create the blueprint for government in which each of them would have a role—as we have, today. They lived in a time of revolutionary chaos and uncertainty, but they did not yield to chaos. They sought the most noble aims and drafted the most noble document. Now, as then, we constitute the government. So if we really want to, we can influence what it does. It simply takes vision, focus, and will.
Making US healthcare both patient-centered and cost-efficient is a tall order. It hasn’t been easy to make progress so far and it won’t be easy from here. But it is necessary. Absolutely necessary. For the well being of us all.
Friday, April 26, 2013, we’ve organized events to salute the 1917 Clinic’s twenty-fifth year in operation.
We begin with a six-hour scientific symposium. I feel like I’m hosting an ID class reunion, and I can’t believe my good luck that so many past and present UAB eminences can attend. There’s Eric Hunter, who once headed UAB’s Center for AIDS Research and now heads the CFAR at Atlanta’s Emory University. There’s Michael Kilby, former medical director at the 1917 Clinic, now director of the Division of Infectious Diseases at the Medical University of South Carolina. There are my UAB colleagues Vicki Johnson (Virology Specialty Lab director), Paul Goepfert (Alabama Vaccine Research Center director), Michael “Mugs” Mugavero (CFAR deputy director), and Jim Raper. And, from my formative years in the Shaw-Hahn lab, there’s George Shaw, now on faculty at the University of Pennsylvania. Beatrice Hahn wanted to be with us, but she’s in Washington, D.C., being inducted into the National Academy of Science Institute of Medicine—one of the highest honors scientists in the United States can achieve—in recognition of her lifetime contribution to solving the mysteries of HIV. How fitting that Beatrice’s induction to the IOM coincides with this day of celebration of the 1917 Clinic and UAB’s Center for AIDS Research.
After UAB Vice President for Research Richard Marchase gives welcoming remarks to open our symposium, we spend the day reflecting on, in essence, what’s been survived and what’s been achieved.
George has titled his remarks “Discoveries from the UAB 1917 Clinic that have Changed the World”—and at risk of sounding arrogant, we do allow ourselves to revel in some hard-won victories. But mostly, we look with gratitude on the successes of the worldwide scientific community. Speakers acknowledge the work of Tony Fauci, Bob Gallo, the scientists at the Pasteur Institute, Paul Volberding, and on and on. With each successive speaker, I’m more aware of how the progress was possible only because the scientific community, the patient community, the pharmaceutical company community, and the government community all pulled together in a common cause.
After lunch, my cousin Mary speaks for her many fellow patients of the clinic. She offers thanks to “all of you who’ve forfeited sleep, and money, and fame, giving your lives to those of us who believed our lives were over.”
Mary always knows exactly how to make me guffaw or weep, and this day is no exception. She jokes about initially resisting when her mother Marjorie urged her to consult with me: “I’d seen my cousin Michael. We’d been at weddings and funerals together. He seemed very nice. But I was in the care of New York City physicians with famous patient lists (and) terrific haircuts … Michael looked like he could be a junior high band instructor from Topeka.”
Once the laughter stops, Mary concedes that she’s glad she gave treatment here a try after all. “Two decades ago I came to UAB full of certainty and skepticism,” she says. “I was certain about my own death; I was skeptical that Michael Saag, or any of you, could do anything about it. I’ve returned today as evidence that death did not have the last word on AIDS.”
I choke up more than once during Mary’s remarks, but especially at the end, when she turned toward me and said softly, “Thank you for my life.”
Saturday, April 27, 2013. I am sitting in a front pew in the light-filled sanctuary of the Baptist Church of the Covenant in Birmingham, waiting for the start of an afternoon service led by two great friends of the 1917 Clinic: former chaplain Malcolm Marler and current chaplain Chris Hamlin, the former pastor of the 16th Street Baptist Church who led the service when Mary spoke there in 1993.
Sitting next to me in the front row is my cousin Mary. Sitting in the row immediately behind me are Amy, Andy and his wife, Brittany; my sisters, Terry and Barbara, my brother-in-law Greg, and my mom, The Big E. A few rows back: Jim Raper and Scott. As they’d say on Broadway, “the house is stacked.”
As my eyes pan around the sanctuary, I see many more clinic staffers, present and past: Carol Linn, Patsy Barron, Gina Dobbs, Laura Secord, Joe Elmore, Michael Mugavero, Turner Overton. I see current patients—people recently enrolled in care, and people like Alan who have been in care for years.
As I gaze into the empty choir loft behind the podium, the more I look, the more I’m convinced I see others who were here earlier: Ones I could love but could not save. Brian … Michael … Jacob … Ed … Jim … Ben … Elliott … Granger. I see Cyndie and I hear her quiet prayer. Behind her, to the left, is that Eddie Saag—has my father somehow found this place, this day? From somewhere in the mist I hear a familiar voice say, “Mike, you did good”—that treasured compliment from my childhood construction crew buddy, Pitt.
We’ve gathered not to mourn but to celebrate. This worship service is the crowning event of the twenty-fifth anniversary weekend; it honors all the patients the clinic has served and all the staff who’ve worked so long, so hard, with such common purpose. When I imagined I was seeing all those dear departed patients in the choir loft, my eyes may have been playing tricks on me, but my heart was telling the truth. Everyone who figured in the clinic’s first quarter century truly is there with me.
“It’s important that we remember—not only for us as individuals, but for us as communities,” my cousin Mary says when she rises to speak.
“There’s a pan-African term, abataka, which means ‘community.’ But it also means oneness … shared traits and shared identity. It means belonging, in the sense that you and I belong to one another. Abataka reminds me that communities need history, and history needs memory. It helps me recognize that out of the most deadly epidemic in human history, you and I have been left with the gift of abataka, community. In the common experiences of brokenness and dying, we have found one another. In the agony we could not endure, we were held by those who understood.”
After the service we walked en masse from the church’s door to the 1917 Clinic two blocks away. It’s a halfcentury since others walked these sidewalks under threat of fire hoses, billy clubs, racial taunts, and degrading curses. Today, we walk to celebrate the miracle and magic of science and compassion.
The strains of “Amazing Grace” have hardly faded when, in my mind, I hear the soft piano chords of John Lennon’s Imagine playing in cadence to the sound of our marching feet. I have known and loved this song for so long that I don’t so much hear the lyrics as feel them in my bones: that notion of no hell below or heaven above, just people living for today. It all seems right to me and true. There is amazing grace. It’s what allows people like me to believe in change as vast and hopeful as John imagined. And if that belief earns me the label of dreamer … well, I’m in good company.
Had UAB and all these people left me alone, I would have failed. Together, we succeeded. Admittedly, we were all dreamers. Here and there, magic happened. But we were not the only ones. Despite the chaos, we found others who shared our dreams.
If we can tackle AIDS while it thrives under the shadow of bigotry and stigma, surely we can fix a broken healthcare system that’s visible to all. Surely we can. We need to act now. We need to do what needs to be done with the same energy and persistence we applied to the AIDS epidemic, woven together as an inspired community—a medical neighborhood of providers and patients, researchers and activists, public servants and corporate citizens.
It isn’t too late. I know because I still see the man I thought was Pitt sitting outside the VA. He’s still lifting that Camel to the steel plate on his throat. He could still be saved. Surely he could.
What could we accomplish, all together? Just imagine.
* Weinstein, Milton C. “Should physicians be gatekeepers of medical resources?,” Journal of Medical ethics, 2001, 27:268–274.
* Schroeder, Steven A. and Frist, William. “Phasing out fee-for-service payment,” The New England Journal of Medicine, May 23, 2013, 368:2029–2032.