One of the most liberating honors of my life was announced in summer 2007, in a four-paragraph UAB press release. “Thomas A. Blount has graciously and generously provided the funding for the Jim Straley Endowed Chair in AIDS Research,” the release began. “And Michael S. Saag, MD, has been named the first holder of the new chair.”
An endowed chair gives its holder a lasting source of support beyond the academic salary—support, for example, for additional research projects. Especially these days when grant funding is so scarce, an endowment is a huge asset. What made it even more valuable, to me, was the way Tom Blount dedicated the chair: “I get a very good feeling from making this gift in memory of my life partner and in honor of Dr. Mike Saag, one of the true heroes of the HIV epidemic,” Tom said in the press statement.
In reality, it is Tom and Jim who were heroic in their dogged pursuit of new HIV treatments and their fierce devotion to each other. I gratefully accepted the appointment to the Straley Chair, and I have pledged always to use it to push the frontier of HIV/AIDS therapeutics in tribute to them both.
If I feel pretty secure professionally thanks to the allies, tenure, and credentials I’ve acquired over the years, an endowed chair affords another level of security and independence, a buffer of sorts between me and that pervasive, often corrosive force: politics. On any given day, the politics of grantsmanship may pit my NIH connections against those of friends in the competition for federal funding. The politics of the Old Docs Network may influence who gets invited to present a paper, publish in a journal, or fill out a golf foursome. The political dance with the pharmaceutical industry may require doctors to get close enough to contribute but not so close as to be co-opted.
The politics of academia may elevate one UAB official and topple another: In my three decades here, I’ve worked for six presidents and four deans in the School of Medicine. And the university also gets involved in local politics in Birmingham, whether it’s top UAB officials courting city support for campus projects or the 1917 Clinic just trying to get the abandoned building next door torn down.
So, politics can intrude on all aspects of life, and to an extent I’m resigned to that. But for sheer magnitude and destructiveness, nothing else approaches the politics surrounding US healthcare. I can ignore the politically motivated shenanigans that are merely irritating or an insult to Americans’ intelligence. But the politicization of serious healthcare issues has taken an enormous, morally intolerable toll on my colleagues and our patients.
In 2012, the New England Journal of Medicine marked its 200th anniversary by publishing several special reports. One that caught my eye was by Jonathan Oberlander, PhD, a professor of social medicine and health policy and management at the University of North Carolina–Chapel Hill, and an expert on the politics of healthcare reform and cost control. The report was titled “Unfinished Journey—A Century of Health Care Reform in the United States.”*
Oberlander observed that it was a century ago, 1915, when reform-minded Americans put forth “the first major proposal for national health insurance in the United States,” and that “Americans are still debating health care reform, the perils of ‘socialized medicine,’ and the tensions between individual liberty and government aid.” While the debate has raged, he says, “Americans have been singularly unsuccessful in restraining health care spending.”
I’m convinced that Oberlander has it right:
The United States has moved through fads at a dizzying pace in recent decades—from managed to consumer-driven to accountable care—but they have thus far failed to produce reliable cost control. Rising health care costs are an issue throughout the industrialized world, though other countries manage to spend much less while insuring their entire populations. Still, lessons from international experience are largely ignored by U.S. policymakers and analysts intent on fashioning a “uniquely American solution.” The United States has not adopted the cost-containment policies that work in other countries: global budgeting, system-wide fee schedules and payment rules, monopsony purchasing, and supply-side controls on expensive technologies. Instead, America continues to abide high prices and the staggering administrative costs imposed by our byzantine insurance system.
U.S. health policy is a story of progress, with substantial gains in health insurance coverage over the past century, culminating in the (Affordable Care Act’s) enactment. But U.S. health policy has also been an abject failure, having produced an inequitable, inefficient system that is the most expensive in the world and that leaves 20 percent of the nonelderly population uninsured …
Here’s where Oberlander gets to what I consider the bottom line—how the system’s failures affect patients:
Too many Americans who fall ill are forced to worry about how to pay their medical bills and the threat of medical bankruptcy, rather than focusing on getting well or coping with maladies that won’t improve. Too many Americans cannot obtain decent, affordable insurance because they have preexisting conditions, lack the financial resources, or work for a small business. Too many Americans with permanent disabilities must wait too long before Medicare covers them. Too many Americans who are eligible for Medicaid and CHIP (the Children’s Health Insurance Program) fall between the cracks. Too many insured Americans are only one illness away from discovering they have inadequate coverage that leaves them with overwhelming bills. Too many Americans have to fight their insurance companies to obtain covered benefits.
That these and other indignities have persisted so long is an indictment of U.S. health policy and its moral quality. If there is one thing we should learn from the experiences of other countries that have universal coverage, it is that it doesn’t have to be this way. None of these problems are natural or inevitable—they are all the result of policy choices that the United States has made.
I do not quarrel with Oberlander’s use of the term “policy choices.” But let’s break it down and consider the words separately.
Policy. In the United States, healthcare policy is an amalgam of rulings, regulations, and laws shaped by interest groups, market forces, and all three branches of government. And the amalgamation process has been repeatedly, horribly distorted by special interests’ manipulations and money—what I call “politics” for short.
Choices. Oberlander blames the many problems in US healthcare on “choices that the United States has made.” But I say The System’s in crisis because the important choices—such as how people get care and what they pay for it—have not been made by “the United States” in any real and representative way. The important choices get made by the tiny fraction of Americans who are “leaders” (political or corporate), under pressure from the somewhat larger fraction of Americans who are powerful (monied lobbies and special interests). And the truly important choices appear to be made with shocking disregard for the needs of the vast majority of Americans, both healthcare consumers and the providers who serve them.
If “we, the people” do not drive these choices, what does? Mostly political expediency, the profit motive, and in my view, a lack of the integrity and courage that we expect from leaders.
The Center for Responsive Politics is an independent research group that tracks money in US politics. For the period from 1998 to 2012, the center reports that healthcare industries and organizations spent nearly $5.36 billion lobbying Congress. To put that in perspective, that’s more than triple the spending in the same period by a sector known for lobbying largess: defense interests (which spent $1.53 billion). Close to half of the total—$2.55 billion—came from the pharmaceutical and medical devices industries.
We all owe a lot to the pharmaceutical companies. They’ve pioneered, refined, and manufactured the medications that keep patients and loved ones alive. In HIV/AIDS medicine, at first I had no useful drugs to give my patients. Later, I’d have to prescribe literally handfuls of pills for them to take every day on a strict and intrusive schedule. Today, the newest drugs are very well tolerated and can be given as a single daily pill containing all three or four of the active drugs. One pill, once a day. And companies are now working on formulations that could allow a medication to be taken once a week or perhaps once every three months. I cannot say enough good about these achievements.
But the scorecard on the industry casually known as “pharma” is decidedly mixed. The industry’s lobby on Capitol Hill is so formidable that neither law nor regulation has done much to affect how it does business. Specifically, it has stifled competition in two concerning ways. First, through the Medicare Part D legislation—mostly written by lobbyists—it prohibits the government, as a payer, from negotiating for lower drug prices. Second, it established systems to buy out generic companies’ products so as to limit or eliminate generic drugs as competition for its brand-name products after the patent life of the brand drug has expired. This practice is now under review at the US Supreme Court. Both practices hurt consumers and force providers to use certain companies’ products—whether they’re the best choice or not—in ways I find unethical.
In the twenty-first century, my old pharma friend Howie Reiss’s approach—selling a disease as a means of creating market share for a new drug product—has been applied with dramatic results to other conditions such as erectile dysfunction and restless leg syndrome. Neither of these disorders was a public concern until new drugs were created to treat it. And by the time these drugs came of age, a new pernicious marketing tool had come into fashion: Direct to Consumer (DTC) advertising. Instead of pitching to the providers, this approach pitches the disease directly to prospective patients. The guy with erectile dysfunction may not have thought of it as a treatable “disorder” until he saw the ads on TV for Cialis, but soon, he’s heading to his provider to ask for the treatment. (Judging simply by the number of times I have seen that man and woman holding hands between two bathtubs perched on the top of a hillside, I guess the DTC approach is working quite well.)
In the HIV world, more companies bringing more drugs to market means more competition, so the companies have to do more to secure and maintain market share. From 1996 on, as the HAART era emerged, more companies got into HIV and more products entered the marketplace. This was great for patients and treaters—more options, better options—but it sent drug companies scrambling to figure out how sustain sales. They reached out to Howie Reiss’s firm and others like it to help them plan a market strategy through CME, the continuing medical education sessions that physicians and other healthcare providers attend to keep their knowledge current.
CME sessions often were scheduled as “satellite meetings” associated with major scientific conferences that many providers would be attending. The satellite meetings would be scheduled to bracket the conference sessions—in the evening with dinner after the last conference session of the day, or in the early morning with breakfast before the conference began. The meals would be accompanied by three or four twenty-minute lectures given by Key Opinion Leaders (KOLs). Attendees would flock to the satellites for the free food and the chance to hear the latest information synthesized into digestible points they could take back to their practice. And they may or may not have grasped how carefully that information had been groomed to further the marketing objectives of the funding company.
There was one event in particular that sealed my understanding of the process. A few years ago, my esteemed colleague Paul Volberding and I were two of the four presenters during a satellite meeting at the Interscience Conference on Antimicrobial Agents and Chemotherapy, an important annual event in ID circles. A drug company covered the costs of the satellite meeting, including paying the commercial CME firm that organized the session on the topic “Adherence to Treatment.”
The CME firm had asked me to serve as chair of the meeting, a role I took seriously. As the firm was planning the meeting, I made suggestions for session topics and presenters. Once all presenters were chosen, I reviewed their slides to make sure there was balance in the presentations. And at a pre-conference meeting with presenters, I emphasized the importance of two things: avoiding even the appearance of bias toward the funding company, and staying on time. To me, any presenter who talks longer than his or her allotted time is essentially making the statement, “My talk is more important than everyone else who follows me!”
Going into the meeting, I felt good about the balance of the program and its content. And I couldn’t help reflecting on how far we had come: The company funding the meeting was just about to release the first single-tablet, three-drugs-in-one-pill formulation of a HAART regimen. One pill, once a day!
Paul was the meeting’s first speaker. His presentation was first-rate but running a little long, so, mindful of finishing on time, Paul closed his talk prior to showing the last two slides in his presentation. The lights came up and Paul left the podium to hearty applause. From my position near the table where the conference organizers sat, I could see them huddling and speaking in urgent whispers. The next thing I knew, one of the organizers had run up to Paul and, after they exchanged a few words, Paul returned to the podium and the hall lights went back down.
Paul leaned toward the microphone and said, “I have been told to finish my talk.” He then showed his presentation’s last two slides—one of which showed a patient’s hands outstretched, a handful of pills in one palm and a single tablet in the other.
Paul, being a good speaker, did not want to run long. The CME firm, however, didn’t care about that. They knew if they did not fulfill the mission of its funder, they would no longer get any business from this company. Their job, in their view, was to be sure that the key slide—contrasting a handful of pills with the funding company’s single pill—would be put before the audience, in hopes that it would indelibly impress the marketing message, “one pill = better adherence.” I’m sure many providers did get that message, but I came away with another one: That no matter how much I tried to assure balance and impartiality in the meeting, I was not in control.
That was the last satellite meeting in which I participated.
With the creation of the IAS-USA, providers in infectious disease medicine were spared CME concerns. By eliminating pharma influence on content at IAS-USA CME events, we were free to choose the information we felt was most important and the speakers we deemed well versed and unbiased. We’ve used that freedom to explore innovative ways to educate, such as web-based programs. I consider it a quiet but important victory.
Then there are “advisory board” meetings in choice locations for KOLs, with all expenses paid and sometimes a fee for consultation services.
In my view, there are two types of ad boards: those who truly seek input from the KOLs for scientific direction and assessment of the marketplace, and those whose mission is to influence the thinking and opinions of the KOLs. The former type of meeting I appreciate. They enable us to think through what the patients need, what the providers need, and what the scientific community needs. It can be a brainstorming session where everything is on the table, and it often leads to creation of new products that clearly advance the field.
I abhor ad board “Indoctrination Meetings.” When they are done well, the participants can hardly tell they are being “pitched,” which makes them all the more insidious. When they are not done well, I feel like I need to take a shower afterwards. Such indoctrination meetings aim to influence KOLs to think the way the company wants them to think so that when the KOLs present data in public, they are “on message” with the drug company’s marketing objectives.
Pharma companies are not evil. They do what they are supposed to do: create new drugs and, once created, sell as many of them as they possibly can. That is their job, their mission, both for themselves and their share-holders—and along the way they create breakthrough products that change people’s lives. Generally speaking, they do their job very well. The communications firms that help the drug companies pitch their message are not evil either. They’re doing their job, managing the message of the KOLs and the satellite meetings. And the KOLs are not evil. They are simply trying to communicate what they feel is important. But like the combination of three safe chemicals which, when mixed, yields an explosively dangerous product, if pharma and marketing and experts are inappropriately aligned, the result is dangerous and, in my view, wrong.
Some claims at “reforming” the relationship between pharma and physicians are comical, or would be if no one took them seriously. Just as restaurants used to give branded books of matches or as car companies give key rings bearing their logo, pharma may give providers pens, note pads, umbrellas, and other minor gifts. A few years ago, Republican Senator Charles Grassley of Iowa began a crusade against such practices. He found a direct line between pencils given to providers and Medicare’s rush toward bankruptcy. The senator convened hearings, called for FDA investigations, and tried to shame providers who’d accept gifts. Ultimately this led the Association of American Medical Colleges, the organization that oversees physician education and medical schools, to adopt new policies that prohibited providers who were faculty from taking any gift from pharma.
As UAB considered implementation of this policy, I conducted a small study. For years I’d invited drug company representatives to purchase lunch and bring it to our Friday noon HIV clinic conference that all providers may attend. In return, I allowed the pharma reps to make a short presentation regarding their company or their product(s) as the meeting started. Most often, the reps’ whole speech was, “Glad to be here, enjoy your lunch.” My study involved sending a short survey to the clinic staff asking (1) if they had attended any of the lunch meetings over the previous four weeks; (2) if so, did they recall the name of the company that provided lunch for the meeting(s) they attended; and (3) could they please name at least one drug that company sold.
Less than a third of the attendees could remember the name of the company providing lunch for any of the meetings—and among those who did remember, less than half of them could name a single drug that company sold.
Brand-name drugs are prescribed with great frequency, mostly because the newer drugs (for which there aren’t yet generics) are often better. This is certainly true in the world of HIV, where older drugs such as DDI, DDC, D4T, and AZT are less well tolerated than newer drugs such as tenofovir. Brand names are generally more expensive than generics. But generic drugs are often hard to come by or in short supply. There are shortages of simple drugs like penicillin, doxycycline, and intravenous acyclovir. These drugs are easy to make, yet from the supply you’d think that someone was paying generic companies not to make these drugs so that providers have no choice but to prescribe the more expensive drugs.
Consider also the case of colchicine, a plant-based drug used for decades to treat gout that had long been available as a generic drug at a cost of pennies per tablet. A company conducted a study that “proved” colchicine works for gout (surprise!), and the company is then granted patent protection for the drug. This leads to a monopoly for the sale of colchicine such that the cost for a thirty-day supply increases from less than $8/month to more than $100/month. Senator Grassley didn’t notice.
I have no problem with a law the Senator cosponsored, the Physician Payments Sunshine Act, which as of 2013 requires that drug and medical device manufacturers’ payments to physicians be published on a federal website. But while Mr. Grassley has attacked providers for accepting trivial gifts like pens, he and his senatorial campaign accepted hundreds of thousands of dollars from pharma as Mr. Grassley worked to pass the Medicare Part D prescription drug benefit or to fight the passage of the Affordable Care Act. Between 2006 and 2012, four of the top ten interest sectors contributing to Mr. Grassley were health products, professionals, and services—and they gave more than $1 million of the nearly $6.2 million Mr. Grassley took in, according to MapLight, a nonpartisan research group that explores money’s influence in politics
Senator Grassley’s actions would be insulting if they were not so laughable. I couldn’t care less about the pharma tchotchkes that Grassley wants withheld. I’m much more concerned about how Mr. Grassley and his friends accept millions of lobbyist dollars while depriving my patients and colleagues of needed healthcare resources.
“As chairman of the finance committee, Mr. Grassley championed the legislation that created a prescription-drug benefit under Medicare,” the so-called Medicare Part D benefit, as editor-in-chief Jacob Weisberg reported on Slate.com. A provision in the legislation actually prohibits the government from negotiating lower prices from pharma; the government must pay retail for the drugs, which obviously means lots more cash for drug companies than if the prices could be negotiated down. Small wonder that by the time it passed, Part D’s estimated cost had been revised up from $395 billion to $534 billion over ten years—a price tag Medicare’s chief actuary later told Congress he was warned not to release if he wanted to keep his job.
As correspondent Steve Kroft reported on CBS’s 60 Minutes, at least a half dozen former senators and Congress members “registered as lobbyists for the drug industry and worked on the prescription drug bill.” US Rep. John Dingell, a Democrat from Michigan, told Kroft that “when the bill passed, there were better than 1,000 pharmaceutical lobbyists working on this.” A couple of months after the bill passed, a representative who’d championed it, Louisiana Republican Billy Tauzin, “accepted a $2-million-a-year job as president of PhRMA—Pharmaceutical Research and Manufacturers of America,” Kroft reported. And in the months after the vote, Kroft reported, “at least fifteen congressional staffers, congressmen, and federal officials left to go to work for the pharmaceutical industry, whose profits were increased by several billion dollars.”
To my knowledge, none of these activities are illegal. Senator Grassley and his friends have kept America safe from notepads and umbrellas. But the senator’s self-righteous concern about special interests’ contacts with physicians appears not to extend to his own reelection campaign and political action committees.
When elected “leaders” approve the Medicare Part D benefit, a major tax cut, two long and expensive wars, and then use the resulting federal deficit to justify cutting spending in NIH research—something is wrong with this picture.
While lawmakers tinker at the margins of the crisis, the cost of America’s healthcare is on its way to $3 trillion. Since 1960, healthcare spending has climbed so steeply that it increased almost five times as much as the nation’s gross domestic product did.
These and other statistics jumped off the page at me in March 2013 in a remarkable issue of TIME magazine dedicated to US healthcare.* The cover story was a 24,000-word investigative piece by journalist Steven Brill headlined “Bitter Pill: Why Medical Bills Are Killing Us.” Brill spent seven months examining bills from hospitals, physicians, pharmaceutical companies, and other participants in the US healthcare system, in an effort to understand where all the money goes.
Just how much money? Brill cited studies showing that the United States spends more on healthcare than the next 10 biggest spending nations combined—among them, Germany, the United Kingdom, Canada, and Australia. To put other national expenditures in perspective, he noted that the $60 billion that was spent cleaning up after 2012’s Hurricane Sandy is roughly what America spends on healthcare in an average week.
Brill’s examination of bills showed staggering discrepancies among the amounts that patients are asked to pay for the same items and services—and no apparent medical reason for those differences. He described how a hospital’s internal price list, called a chargemaster, may dramatically mark up items or services—charging patients $1.50 for a single tablet of acetaminophen, for example, or $157 for a CBC (complete blood count) test for which Medicare might pay only $11. Why does this occur? Because it can. That is, because sick patients are hardly in a position to bargain when they’re told their health depends on them getting a medication or treatment, whatever the price.
The conclusion to Brill’s report is sobering. Under the current system, he contends, “we’ve enriched the labs, drug companies, medical device makers, hospital administrators and purveyors of CT scans, MRIs, canes and wheelchairs. Meanwhile, we’ve squeezed the doctors who don’t … game a system that is so gameable. And of course, we’ve squeezed everyone outside the system who gets stuck with the bills.”
The man has a way with words.
So does Dr. Milton Weinstein, a professor of health policy and management at the Harvard School of Public Health and also a professor of medicine at the Harvard Medical School.
Professor Weinstein is an expert on assessing cost-effectiveness in healthcare. With computer simulation models and other analytical methods he developed, he evaluates the value of spending on healthcare practices—that is, how much cost produces how much health benefit. When I asked him to describe an exemplary healthcare system that does right by patients, payers, and providers, here’s what he envisioned:
First of all, in that system, the interventions that are not effective are not implemented. Now that’s easy to say but the problem is, we don’t know which interventions are effective and which are not. There may be incomplete evidence; a lot of things get done in medicine for which there’s not a randomized, clinical trial, and that is understandable because we don’t have the time or resources to do randomized trials of everything. So that’s a fairly weak statement, to say we shouldn’t be doing things we know aren’t improving health. But … health care decisions have to be made without the kind of ideal evidence we might like to have.
Once you identify those interventions that are either harmful or clearly not beneficial, then you start looking at cost-effectiveness and value for money, taking into account that the benefits and costs of most health care interventions are uncertain.
What would an ideal, well-functioning health system look like? A well-functioning system would basically be investing in interventions that are more cost-effective than the interventions they’re not investing in. Or turning that around, they wouldn’t be doing things that are basically more expensive ways of providing the same health improvements for which there are less expensive ways of providing.
For example, let’s consider how the health care system is investing in end-stage treatments. In AIDS, they’re not investing broadly enough in getting people on treatment, which has a very high value for the money. But they are doing things that have a low value for the money spent, such as low-value laboratory tests.
Another example: We spend a lot of money on end-stage cancer treatment. There are compelling reasons that we do that, but at the same time we don’t spend a lot of money—or perhaps enough money—on cancer prevention. Only about half of the people in the United States over age 50 have ever had any kind of colorectal screening, and that’s a very cost-effective thing to do whether it’s a fecal occult blood test or a colonoscopy. So we don’t do enough of that but we spend a lot of money on end-stage treatment when people get cancer.
It’s hard to say, “If someone is dying of cancer, should we spend the money for a drug that could increase their survival for two more weeks?” Maybe we should spend $100,000 for those two more weeks; we tend to do that in this country. But we don’t go out of our way to do things upstream that might prevent more deaths, extend life and improve quality of life more than those end-stage treatments.
So the way to improve the system if you don’t want to spend more money is to scale back on the interventions that are costing a lot per unit of health bought, and put the money into interventions that could buy more health. By doing that, you’d be spending the same amount of money and getting more health improvement for the money.
Thanks to data Professor Weinstein and his colleagues have developed, we can know in detail which healthcare interventions are most cost-efficient. But having this knowledge is one thing, and changing America’s system to act on it is another.
Countries with single-payer, national healthcare programs can standardize cost-efficient approaches throughout the system. But as Professor Weinstein observes, “We’re not going to have a single-payer system any time soon. In this country, we’re kind of wedded to the idea of the ‘free market’ even though many health economists would tell you that markets don’t work very well in health care.”
If we’re going to evaluate the effectiveness of services, we should start by understanding the metrics used in US healthcare today. On the receipt from your latest medical appointment, your provider checked one or more boxes on lists of possible diagnoses, each followed by a string of numerals. Those so-called ICD codes are the numerical identifiers assigned to each diagnosis under the International Statistical Classification of Diseases system overseen by the World Health Organization.
If your illness requires hospitalization, those ICD codes will be used to help assign a diagnosis-related group, or DRG. A computer program looks at your age and gender, the procedures you’ll need, your primary diagnosis, and other significant conditions (or “comorbidities”), and it classifies you into one of about 500 DRGs. Because each patient in a given DRG is clinically similar, each should (at least theoretically) use roughly the same amount of hospital resources. So the DRG establishes a standard reimbursement rate, what the hospital should be paid for the care of that patient. Medicare started using DRGs in the early 1980s as a way to slow the increase in hospital spending; since then, most major insurers have adopted the system.
Right now, physicians for hospitals have DRGs and a payment schedule based on cost, not based on benefit. What if we modified these payment schedules so that instead of making money on services that Professor Weinstein’s research has shown to be cost-ineffective, providers would get paid more for doing things that are cost-effective? Interventions that represent the best value for patients in medical and monetary terms? Medicare could do this right away if there was the will to do it—but there’s no will, because the cost-ineffective treatments are profitable for those hiring lobbyists. As in the case of using DRGs, if Medicare did it, then a lot of the private insurers might do it, too. It’s not a sweeping solution, but it’s a start. And it embodies the two goals that must be our top priorities: bringing down costs while putting patients first.
I’ve seen firsthand what it looks like when care genuinely is centered on the patient. In the early years of the AIDS epidemic, in the midst of horrendous loss and pain, professionals and untrained but committed people created their own care community, and what they built was—and in some instances still is—magnificent. That’s why I’ve often said that though I don’t want to have HIV, I’d love to be cared for in an HIV clinic. Many of these clinics created and still maintain the very definition of a caring, collaborative, communal-spirited healthcare system. It wasn’t just about the management of one disease by a few paid but disinterested professionals. It was about figuring out what everyone needed—patients, loved ones, practitioners—and what everyone could contribute, to the point of self-sacrifice. At least in the Ryan White clinics, and at least for a while, there was a genuine feeling of medical community, of neighbors pulling together to seek wellness for all.
Wellness. It was a curiosity in the late 1970s when a few medical visionaries used the word to define health as more than just the avoidance or absence of sickness. But then, according to the New York Times, “Carping over wellness faded away in the ’90s as the term gained a foothold in everyday use.” By now, the word may have been so co-opted by marketers that we could forget its true value, which is significant. Genuine wellness means total well-being, not just physical but mental and social and spiritual, a state grounded in maximizing potential as much as minimizing illness.
Wellness, in my opinion, is best (perhaps only) achieved and maintained in the context of community, the collective. My asthmatic neighbor can’t be well if the local factory pollutes our air. My school district’s children can’t learn if they’re hungry for lack of nutritious food or can’t see the white-board because they need eyeglasses they can’t afford. If we all are to strive for wellness, everybody can’t be shooting everybody else, somebody has to help me with my kids when I’m sick—you get the idea. The ultimate goal of the healthcare we actually want is to foster wellness for individuals in community.
In the United States today, neighborhoods of any sort are pretty scarce. Sure, people live in geographical proximity and come together periodically around common interests, creeds, or tasks. But only in some of those settings is there a real “neighborhood spirit,” where a cohesive, intentionally interdependent group of people look out for one another and promote a common good. The trick is to include everyone, including those who are not like me. When we think of a neighborhood that encompasses differences—where the “we” is not just “everyone like me”—we’re on our way to imagining an intentionally interdependent group.
So we’d have to lay a lot of groundwork to encourage community-minded healthcare and medical neighborhoods. And the greatest barriers, in my opinion, are the people who really just don’t believe in community. Lately, many of them carry the banner of the Tea Party; in times past, they may have marched with the Moral Majority, the Ku Klux Klan, the isolationists, or sundry other “me-first” groups. If my child is dying and you believe in community, you and our community will help me with my burdens, including my child’s medical bills. You’ll likely do this through a shared contribution often called “tax.” If you do not believe in community and my child is dying, you ask, “Why should you get any of my (tax) money to keep your child alive?”
That’s not the pay-it-forward philosophy that was handed down from the Switows and Saags and Weils to Amy and me, and that we strove to pass on to our children. It is not the ethic that my friend Jim Heynen was raised with by his Calvinist dad, who often told him, “God gave us money as a loan, and we repay him by giving it to others.” It’s not the kind of healthcare that I want to practice. It’s not the kind of healthcare that I want delivered to anyone I know—or anyone I don’t know, for that matter.
And it’s certainly not the best healthcare we can offer in a nation this prosperous, entrepreneurial, and magnanimous.
I hate it when my idealistic bubble is burst, when the great things I imagine just can’t be realized. Basically, I hate it when I don’t have control over things, which happens a lot.
Most of all, I hate it when evil wins. That’s what HIV/AIDS is, an evil thing that hurts innocent people. Like my old research buddy Emilio Emini said, “I hate this virus!” Thus, I love it when we triumph over the virus, and I hate when we lose.
I also fear loss. I fear losing whatever has meaning to me, things I’ve worked hard for, things that I love and consider irreplaceable.
After my family, among the things I most fear losing are cherished colleagues and patients. The damned virus—and I use that term with theological precision—has robbed me of more patients and colleagues than I can count. But I’ve also lost patients and colleagues to the screwed-up US healthcare system—patients who slipped through the cracks and colleagues who burned out trying to save them. At some terrifying moments, both the virus and The System have conspired to make me question the reality of hope. I cannot even contemplate life without hope.
About a decade ago, I thought I was going to lose Jim Raper. To explore options beyond banking, Jim’s partner Scott had decided to go to law school at night. “If he does that, we’ll never see each other,” Jim told me. So to preserve his time with Scott, Jim enrolled in law school, too. He got a law degree at night while working full time during the day; he never missed a day of work, and I never even saw him studying while on the job. He not only passed his classes, he passed the state bar in 2003 on the first attempt.
In the back of my mind, I’m thinking, Oy, when he gets this law degree, he’s going to have such an amazing resume that he’s going to leave the clinic. But he really did go to law school to be with Scott, and he really wasn’t looking to leave. Thank God.
In April 2007, when Jim became the director of the 1917 Clinic, he became the only nonphysician director of a clinic at UAB (a distinction he still holds as I write). A few months after Jim became the clinic’s director, the American Academy of Nurse Practitioners named him a fellow, making him the first nurse practitioner in Alabama to receive the honor. That year he also received the Academy’s State Award for Excellence for Alabama.
In 2009, Jim was inducted into the Alabama Nursing Hall of Fame. In 2012, five years after he took the helm of the 1917 Clinic, the journal Science profiled it as one of ten outstanding sites in the nation for HIV clinical care and research.
Now that Jim has acquired a wall full of honors, I subject him to kidding that, unlike much of my humor, is actually based in fact.
“Jim,” I tell him, “you’ve got more initials after your name than you have letters in your name!” With all those degrees, fellowships, and certifications, it’s the truth, even if you spell out his whole name. You do the math: James Luther Raper, JD, MSN, DSN, FIDSA, FAANP, CRNP.
Here’s a person who is incredibly competent and knowledgeable about HIV/AIDS, at least as good as, if not better than, half the physician providers I know. But because he’s a nurse practitioner, his title creates a ceiling, especially in Alabama. Of course, there are entire counties in Alabama that go without care because there’s no physician practicing there—but a nurse practitioner who could ably fill that void is not allowed to have his or her own practice.
That’s one more kind of wall that needs to be broken down if we’re to fulfill the potential of US healthcare. The whole concept of a medical home and a medical neighborhood is based on teams of people collaborating. It’s a horizontal org chart, not a vertical one, a chart where there is no more hierarchy than absolutely necessary. It’s a commitment to delivering health not via a factory model but a family model, one where people come to know and genuinely care about each other.
By now, as Jim has observed, “Mike and I know each other so well that we don’t even have to tell entire jokes, just the punch lines.” Jim is brutally honest with me when necessary; he is also generous and encouraging. When I heard that he had said of me, “Mike works as hard as I do,” I thought there could be no finer compliment. And then he proved me wrong (and choked me up) by going that one better: “Mike works like my grandpa worked, and my dad.”
I don’t know what I would have done all these years without Jim Raper. I am proud that he regards me as a mentor. I value him enormously as a colleague, a workout partner, and a friend. I love that he calls himself “the unofficial uncle” because my family includes him in so many of our special days, from our kids’ bar and bat mitzvahs to Andy’s wedding. Jim and Scott are family.
I regard many of my 1917 Clinic patients as family, too, even when I scarcely see them because they’re off leading healthier lives. Since my longtime patient Jenny relocated to Pennsylvania, I still hear from her by email. I still try to give her good advice based on how well I know her—for example, encouraging her fragile resolve to stay clean and sober, and telling her which versions of her medications are the smallest (she hates swallowing big pills).
I still keep in touch with numerous clinic veterans—people like Alan, who participated in at least five different drug trials over two decades but is now on a solid regimen and doing very well at age fifty-three. Alan lost so many friends in the worst days of the epidemic that he stopped going to funerals after his fiftieth. But when he comes to the 1917 Clinic, Alan still sees a few stalwarts from the drug trial days, including Pearly James.
In drug trials, only code names can be used. Pearly James is the code name selected by one participant in loving homage to his late father—whose given name was Pearly George Raper.
Pearly James runs the clinic under his other name with so many letters behind it: Jim Raper.
Jim learned he was HIV-positive in 1989, but he has never gone public with his status until now.
“I keep asking myself, how I can make a difference?” How often have I heard Jim Raper say this to me—dozens? Hundreds? Thousands? When he knew I was writing a book, and why, he offered to break his silence.
Although in 1982 no one knew for sure how acute HIV infection presented, “I think I remember when I first got infected,” Jim says now.
“I was in the army, I had been to New Orleans, and about a month after I got back to Huntsville I was so sick with fever, rash, sore throat, and abdominal pain they admitted me to the army hospital. They couldn’t figure out what I had; they thought it was a strep infection. But the strep tests were negative, and then I got better.” A year later, Jim was in a relationship with Steve, a music teacher who lived in Birmingham, and relocated to be with him.
In the mid-1980s, before an HIV test was available, Steve began to get sick. Because a former lover of Steve’s had died of AIDS, “we realized what probably was happening,” Jim says. “But I hadn’t gotten sick.” In 1989, still in the army reserves, Jim ran into an officer friend while on reserve duty “and I told her that my partner was getting sick. By then, the HIV test was available, and my friend said, ‘Everybody in the military will have to get tested soon. You should get tested while you’re here.’ I was really scared. She drew my blood and sent it through anonymously, and it was positive. I came home and told Steve, ‘I’m positive and you’ve got to get tested, too.’ And of course he was positive.”
We were conducting a study at UAB comparing AZT and DDI as monotherapy and in combination. Steve enrolled. So did “Pearly James.” When Steve talked about the horrendous taste of the DDI tablets, Jim knew what he meant because Jim was taking them too; he had been randomized to the arm of the study that would take DDI for six months, then add AZT. As Jim recalls it, “I went on the AZT and was intolerant to it. My hematocrit [red blood cell count] dropped so low that they wanted to give me a blood transfusion, but I refused.” So weak he struggled to walk from UAB’s parking deck to his office, Jim came to work nonetheless. He and I got to know each other well during this time when we were allies on so many levels: colleagues at the clinic, friends in the break room, researcher and subject in the drug study.
We substituted stavudine (D4T) for the AZT in Jim’s regimen, and the intolerance symptoms vanished. “I took that combination for years, my CD4 counts remained in the 600s and 700s, and I didn’t have any more problems,” Jim recalls. The reprieve from his own illness was well timed, because it enabled Jim to care for Steve until Steve’s death in July 1993.
Though Jim never said so, I felt like he took on a formal period of grieving, as in the old southern tradition of mourning a departed spouse for a year and a day. Jim worked his long hours at UAB, completed his doctoral degree, and exercised at the gym. But it wasn’t until 1996 that he reclaimed his personal life after meeting Scott, a bank loan officer, while working out at the YMCA. “It was difficult sharing the secret,” Jim says of revealing his status to Scott. “He took it really well …”
By 1997, Jim was administrator of the 1917 Clinic, and he and Scott were in a committed relationship. They had bought a house together with a living room large enough for the enormous number of grandfather clocks Scott collects and a garden out back for Jim to till. Pearly James didn’t participate in clinical trials after 1994. Jim kept a close eye on how various drug regimens were affecting his health and other patients’. By making careful adjustments, he warded off side effects such as elevated liver enzymes and peripheral wasting, and his virus remained undetectable.
Jim now takes his HAART cocktail as one pill once a day and another pill twice a day, which gives him virtually no side effects. Scott continues to get tested annually, but because Jim’s undetectable and they practice safe sex, “it’s never been an issue,” Jim says. Scott and Jim recently returned from a cruise vacation where they met Louis and Sebastian, life partners celebrating thirty-one years together. When Jim spoke of the couple, it was clear how much he wants what they have, love in longevity. With only fifteen more years until that milestone, I think he’s a shoo-in to achieve it.
“You take advantage of the cards you’re dealt,” Jim says of his approach to life. “I don’t know how long I’ll be able to do this, but I love what I do. I work ninety-plus hours a week, and I still get up every morning and wag my tail to work. When I get there, I see patients whose lives are good and full—and they’re taking advantage of the opportunities given to them, just like I’ve done.”
So I rail and curse about the politics and the screwed-up system while I take a cue from Jim and find satisfaction in how we’ve played the cards we’ve been dealt. I love the ways, small and large, my clinic team has made things better for patients, and how we’ve shifted the balance away from nothing but loss, suffering, and death and increasingly toward life and health.
When we first started saying that the 1917 Clinic’s slogan was “Birthdays are our business,” it had a fingers-crossed, whistling-through-the-graveyard feel to it. Now, we say it like we mean it. When we get a patient through to a big number—whether that’s a birthday or a CD4 count—we make a fuss. We celebrated Jim’s fifty-sixth a few months ago with a song and some cake. We plan to do it again, often.
In spring 2013, we marked two milestones I sometimes doubted I’d see: my distant-cousin Mary’s sixty-fifth birthday and the “silver anniversary” of the 1917 Clinic.
For Mary, we baked a cake with enough candles to bring out Birmingham’s fire brigade.
For those we’ve loved and lost, we had a memorial service where we sang and prayed, hugged and wept.
And for Pearly James and all he represents, we printed a banner to remember the joyous occasion:
* Oberlander, Jonathan. “Unfinished Journey—A Century of Health Care Reform,” New England Journal of Medicine, August 16, 2012, Perspective.
* Brill, Steven. “Bitter Pill: Why Medical Bills Are Killing Us,— TIME, March 4, 2013.