Katie Jennings is a writer based in New York. Follow her @katiedjennings

It was late in the afternoon on a warm Friday in early fall and Doug Sumrell was mowing the lawn outside his suburban home in Evans, Georgia. As he pushed the mower across the yard, Sumrell began to feel faint — his chest tightened and the back of his neck started throbbing — so he went inside to take a break and drink a glass of water. But each time he went outside to finish the job, the feeling came back. He drove himself to the hospital as the sun was setting. On the way there, he left a message for his primary care doctor, Dr. Paul Fischer.

At the hospital, a cardiac enzyme test showed Sumrell’s levels were extremely high, a strong indication that Sumrell had experienced a heart attack. The emergency room doctors said that they wanted to admit him, but it was already after midnight and Sumrell’s symptoms had subsided. His wife was out of town and their dog Buddy needed to be let out. Sumrell checked himself out of the hospital.


He was jolted awake at 7:30 a.m. by the telephone. Dr. Fischer was on the line demanding that Sumrell return to the hospital immediately to meet Dr. Faiz Rehman, a cardiologist and friend of Fischer’s, to examine his heart. Within 15 minutes of arriving, Sumrell was in the hospital’s “cath lab,” where Dr. Rehman inserted a catheter through Sumrell’s groin and into his heart, allowing him to see blockages in Sumrell’s arteries. The news was bad: his left anterior descending artery — also known as the “widow maker” — was up to 98 percent blocked. “Lord, I would’ve stayed home and not told anybody if Dr. Fischer hadn’t interceded and gotten me down there and arranged everything,” Sumrell told me.

A few weeks later, Sumrell received a bill for his hospital stay and Rehman’s services. Fischer did not receive a single dollar. And the story of why turns out to get right at the heart of how American medicine remains so costly, inefficient and dysfunctional – even after years of debate and the large-scale reforms contemplated by Obamacare.

In 2012, national health care spending in the United States reached $2.8 trillion, or more than 17 percent of the country’s gross domestic product — more than any other industrialized country. And yet overall our citizens aren’t healthier than those in other industrialized countries. Of course, there are a million complicated reasons for this: Generally speaking, prices in the United States are just higher than those in other countries. In addition, the payment system is fragmented and includes a mix of government funding and private third-party payers, which leads to huge variation in cost for the same medical procedures. Some economists also point to our high administrative costs and the fact that pharmaceutical companies and medical device manufacturers set their own prices, whereas in most other countries, these prices are negotiated by the government.

Another explanation, debated by experts in health policy circles but less known to the public, lies with a secretive committee run by the American Medical Association (AMA) which, with the assent of the government, has enormous power to determine Medicare prices by assessing the relative value of the services that physicians perform. For decades the committee has done so in a way that has skewed Medicare fees in favor of expensive specialists over ordinary general practitioners like Fischer, who are the nation’s first line of defense against serious illness. Because Medicare fees are the baseline for the rest of the pricing in the health care system, this has had a broad effect, contributing to a situation where primary care doctors are in general underpaid, underappreciated — and in critically short supply as medical students flock to where the money and opportunity are. Only 30 percent of practicing physicians in the United States today are primary care doctors, while in most other industrialized nations, 50 to 70 percent of doctors practice primary care. That, in turn, explains a good part of what’s costing Americans so much for their health care. Primary care doctors often treat patients before their conditions get so complicated that they need to seek specialty care, which of course drives up health costs enormously.

And yet even many doctors are not aware of the hidden hand of the AMA-run committee in perpetuating this costly crisis. The panel, with very little transparency or public discussion, continues to give recommendations to the government on how much Medicare should charge for physician services and procedures. The AMA even owns the copyright to the elaborate coding system by which those prices are set, earning huge licensing profits from it, even though the organization has dramatically declined in membership and has largely lost its stature as the primary mouthpiece of the medical profession. (The AMA declined to release specifics but according to the organization’s 2013 annual report, its Books and Products Unit, which includes the licensing of this coding system, brought in $80.4 million that year—more than double the $39.8 million generated from the AMA’s membership dues).

Called “Current Procedural Terminology,” the coding system has numbers to delineate everything from a standard office visit to a complicated triple bypass surgery. But it does not include codes for much of the ongoing work that primary care doctors perform outside of scheduled office visits. In other words, invaluable work like that which Fischer did for Sumrell. When Rehman placed a stent in Sumrell’s blocked artery, he could then fill out paperwork to collect for it – the 5-digit Current Procedural Terminology code 92933 describes the work he did. But there’s no code — and thus no fee — for Fischer’s urgent efforts to get Sumrell back to the hospital in the first place.

Or as Fischer deadpans: “There is no Current Procedural Terminology code for saving someone’s life.”

***

Paul Fischer began his career as a rural family doctor in Weeping Water, Nebraska. Later he joined the faculty at the Medical College of Georgia and eventually founded the Center for Primary Care, which now employs 28 primary care physicians at seven locations in in and around Augusta.

For most of his career, Fischer says, he’d had a gnawing sense that he wasn’t always being fairly compensated for all the work he did. Still, Fischer accepted that there were reasons for it. He took it on good faith that the government and private insurance companies had, in his words, “fair and rational reasons” for how they calculated the reimbursement rates for each code he and his fellow doctors billed.

But that all changed in 2009, when Fischer attended a routine health care conference. Fischer was sitting in an audience of about 100 people when Brian Klepper, a health care analyst (and now the CEO of the National Business Coalition on Health), took the stage and started talking about something called the “RUC.” This was an independent committee of national medical specialty societies convened by the AMA to advise the government on the amount of time, skill and effort that a doctor spends on a given task, and how much that effort should be compensated by Medicare. Fischer, like most doctors, had never even heard of it before. Its name was a mouthful: the AMA/Specialty Society Relative Value Scale Update Committee – or the RUC, for short.

The RUC, according to Klepper, was responsible in large part for a major income disparity between primary care physicians and specialists. That disparity, in turn, was driving medical students toward higher-paid specializations. As a result, the United States was experiencing a primary care physician shortage, which is currently estimated at 16,000 doctors and expected to rise to more than 50,000 by 2025, according to a study in the Annals of Family Medicine.

For Fischer, Klepper’s speech was a revelation. “I was amazed that I could be so dumb to be working all of these years in medicine and to have just assumed that the payment process must be either fair and rational, or ordained by some heavenly fiat,” Fischer told me. “I felt like I’d lost my virginity. … When you hear [Klepper] talk you realize that the system has ruined medicine. I was motivated to do something.”

And when Fischer is motivated to do something, he has a track record of dogged persistence. In the late 1980s, Fischer, then the head of the family practice department at the Medical College of Georgia, and his two-year-old son Tariq were eating dinner at a restaurant in North Augusta. Tariq picked up a soda straw, held it to his mouth and pretended to smoke a cigarette. Fischer asked him what he was doing, and recalls Tariq saying, “Daddy when I grow up, I want to be a man, I want to drive fast cars and I want to smoke cigarettes.” That evening, Fischer realized that cigarette advertising was not just targeting adults, but also sending a message to children.

In 1991, Fischer published a study in the Journal of the American Medical Association showing that six-year-old children recognized the Joe the Camel cartoon from R.J. Reynolds’s cigarette packaging as readily as they did Mickey Mouse. The study went viral, leading Fischer to more than a year of flying around the country as an expert witness in what eventually became the Tobacco Master Settlement Agreement—a 1998 agreement reached by the attorneys general of 46 states against the country’s four largest tobacco companies that imposed restrictions on the sale and marketing of cigarettes.

The question now was: How was an affable family physician going to take on the entire medical profession over unfair fees that were making health care more expensive for everyone?

With Klepper’s advice, Fischer traced the role of the AMA’s secret committee back to 1992, when the U.S. government sought to overhaul the entire Medicare fee system and decided it didn’t have the right personnel to conduct extensive surveys of physicians. So the federal agency tasked with overseeing the program, the Centers for Medicare and Medicaid Services, enlisted the AMA and the committee it had formed to determine what’s known as the relative value of physician work, meaning the amount of time, effort and skill that goes into performing a procedure. Each procedure had a corresponding code in the AMA’s Current Procedural Terminology coding system, which the government had already adopted nearly a decade before, in 1983, as the standard for physician billing and reimbursement for Medicare.

As the committee began rejiggering the value of Medicare services, the doctors serving on it soon realized they were in a zero-sum game: If the cost of a certain procedure went up, the cost of another would need to go down. That’s because the Medicare physician fee schedule must remain “ budget neutral,” which means that the total expenditures cannot increase by more than $20 million per year.

And because the 31-member committee was – and still is — made up of a majority of specialists who typically sought to maximize their own share of the pie (26 of the 31 are appointed by the major national medical associations), it was no surprise who the losers turned out to be. “The specialists know what the game is,” said Dr. Robert Berenson of the Urban Institute in DC, who was a member of the RUC in the early 1990s. “The [RUC’s] basic method of relying on a specialty society to give a non-biased appraisal … is fundamentally a flawed concept.” Dr. Grant Rodkey, the first chair of the committee that came to be known as the RUC, described the scene of the inaugural meeting as “reminiscent of a group of dogs on leash eyeing a platter with a not-too-generous bone,” in a 1997 interview in the Bulletin of the American College of Surgeons. (This is a characterization current RUC officials dispute, and when I asked for comment on the composition of the committee, Dr. Barbara Levy, the present RUC chair and a vice president at the American Congress of Obstetricians and Gynecologists, replied in an email that “the RUC structure incorporates the expertise of more than 300 participants, including physician advisors from every medical specialty and a dozen other health care professionals.”)

Around the time that Fischer met Klepper, the role of the previously obscure AMA-run committee was also beginning to attract media attention. In late 2010, the Wall Street Journal wrote an exposé on the RUC. This piece was soon followed by a Center for Public Integrity investigation and a column in The New York Times by famed health economist Uwe Reinhardt.

By early 2011, Klepper co-authored a column for Kaiser Health News in which he urged primary care medical societies that participated in the RUC to leave the committee so as to “de-legitimize” it. The article caught the eye of a DC-based constitutional lawyer named Kitty Behan, who contacted Klepper with an idea: a lawsuit against the federal government over its reliance on the committee.

Her proposed legal argument: The government’s dependence on the RUC in formulating physicians’ fees was so overwhelming that it was functioning as a de facto federal advisory committee, and should be subject to federal regulations governing such committees. Those regulations require a great deal of transparency that is “open to the public,” as Congress put it in the Federal Advisory Committee Act of 1972. But RUC meetings were closed, invitations had to be approved by the AMA, the charter had not been made public and there were no minutes or public documentation of what was said at the meetings. (Last year, under pressure, the RUC announced it would post meeting minutes on the AMA website.) Above all, the RUC appeared to be dictating solutions to the government. Since 1992, the RUC has submitted more than 7,000 recommendations to the Centers for Medicare and Medicaid Services. The agency has accepted 87.4 percent of the recommendations, according to a study published in Health Affairs.

To Behan’s legal eye, therefore, the RUC was an “unchartered and unofficial” Federal Advisory Committee—one that wasn’t meeting Congress’s demand for openness. And that, she told Klepper, was the basis for a lawsuit that would take on the RUC’s enormous influence over Medicare fees.

Enter Fischer, who had both the legal standing and the financial resources to pursue the case—not to mention his previous experience fighting big tobacco. Fischer agreed, then persuaded five other colleagues to join the lawsuit. “I had always thought that there was some real good reason why what I’m doing isn’t reimbursed as well,” said one of them, Dr. Robert Clark. “But to find out there’s a bunch of yahoos getting up there just doing politics on procedures [inside the committee] and not really having any true scientific reason for it … I mean that’s just wrong.”

***

On Aug. 8, 2011, Fischer and his colleagues filed Paul Fischer et al. vs. Donald Berwick et al., in the United States District Court for the District of Maryland at Baltimore. Berwick was the Administrator of the Center for Medicare and Medicaid Services at the time.

The lawsuit, however, was ill-starred from the beginning. On May 9, 2012, Judge William Nickerson found that the Social Security Act, which established the Medicare program, was outside of judicial review (though his opinion did note that the RUC played a “major role” in physician payments, leading to skewed pricing). This meant that Congress had expressly written into the law that the courts were not allowed to hear cases dealing with certain aspects of Medicare, like fees.

So in order to change the system, the doctors would have to turn to Congress. But Fischer was not optimistic about that either. In 2011, Rep. Jim McDermott (D-Wash.) had introduced a bill calling for greater transparency in the formulation of the Medicare fee schedule. It sought to require the use of independent, analytic contractors to identify misvalued codes instead of the RUC. The bill never made it out of committee.

Four days after the initial ruling, three of the doctors decided to go forward with an appeal but on Jan. 7, 2013, the 4th U.S. Circuit Court of Appeals upheld the earlier ruling, ending Fischer’s fight in the courts. “I was sad, disheartened. I felt like there was no justice in the world,” said Fischer.

Despite the failure of their lawsuit, however, there are signs of new movement both to make the RUC more transparent and to prod insurers to recognize the unstated value of so much of what primary care doctors do. One key moment came in a court ruling this year: For 35 years until last April, all the Medicare billing practices of physicians had been kept private by a court injunction granted to the AMA. But after an appeals court ruled that such information must be made public, the 2012 billing data was released, showing that the top 1 percent of doctors, mostly specialists, accounted for an outsized portion —14 percent — of Medicare billing.

Today ironically, the renegade primary care doctors see hope on Capitol Hill—and in the Obamacare law that so many on Capitol Hill have demonized. In April, seeking to avoid impending cuts to physician Medicare reimbursements, Congress passed the “Protecting Access to Medicare Act.” The new law expands on a provision already included in the Affordable Care Act that gives the secretary of Health and Human Services greater authority to identify and correct misvalued Current Procedural Terminology codes. Spurred by Congressman McDermott — who told me in an email that he still wants “major changes that make the RUC’s process more transparent” — Congress also commissioned a report from the Comptroller General to study the process by which the RUC provides recommendations to the government on Medicare fees.

Even some medical insurers, like CareFirst in the Washington, D.C. region, have begun to rebel against the old system and to push the savings that might come from paying primary care physicians more. “As long as I can remember, family physicians and general internists have been financially at the low end of the totem pole,” even though they’re the ones who perform the critical if unglamorous work of preventing serious illnesses, former CareFirst Chairman Michael Merson told The Washington Post recently.

This problem is being only partly corrected by the Affordable Care Act, which attempts to steer the health system toward value over volume by providing economic incentives for quality care and penalties for poor outcomes. Even so, a June 16 report by the independent congressional agency that advises the government on Medicare concluded the government system still “undervalues [primary care] relative to specialty care and does not explicitly pay for non-face-to-face care coordination.”

The real problem, insist some of those familiar with it, is that the Center for Medicare and Medicaid Services (CMS) is constrained by its own budget in what it can do to fix the problem. “During my time at CMS, we could have always used more staff and more resources to do more work,” Jon Blum, the former principal deputy administrator at CMS, who left the agency in May, said in an interview. “I always felt the RUC was necessary to provide expertise to the agency. It would be very hard, very expensive to re-create during the current budget environment.”

Blum noted that CMS adopted fewer recommendations from the RUC during his tenure than it had in the past: down from almost 90 percent of the committee’s recommendations to around 60 percent in 2012. “I think we also felt at CMS that it wasn’t the RUC that was making decisions,” he said, “it was CMS that was making decisions.”

But even if the process is finally opening up, few expect that to happen quickly. “It’s highly technical. There’s a huge learning curve or getting up to speed with it,” said Miriam Laugesen, assistant professor at the Mailman School of Public Health at Columbia University. “We’re all like cartographers dropped into a country that hasn’t ever shared its maps with the world.”

***

Primary care, like all of medicine, is about fixing problems. Many of them aren’t purely medical. And they are hard, if not impossible, to quantify in the complicated, dysfunctional American health care system. As it is. Not as we would have it be. “It’s a magical thing that happens when you’re in the examining room,” Fischer told me. “People tell you things they don’t tell anyone else, you tell them things that nobody else tells them, you save their life.”

On a crisp January day, a woman in her late 20s or early 30s is seated in Fischer’s examining room. She is wearing a pink V-neck sweatshirt, blue chinos and tennis shoes. Her head hangs down. She raises it as Fischer enters and the bags under her eyes stand out purple against her translucent skin. She says she has come back again, after a visit just a few days ago, because her terrible headache hasn’t gone away. Fischer says that the stress of her recent miscarriage could have caused a migraine.

The patient blurts out that she doesn’t know if she wants another baby. She stares at her hands in her lap. Releasing them every few seconds to wipe away tears.

Fischer is standing, facing her. His voice is quiet and he makes eye contact. “When I lost my son, the best time for me was when I was working. But Saturday when everything was quiet was the worst,” he tells her.

Nine years ago, Fischer’s son Tariq and two friends were killed in a car accident on I-20. Nineteen years old, Tariq was a freshman at Swarthmore College.

The patient lifts her head, consoled by this personal admission of pain that mirrors her own.

There’s no Current Procedural Terminology code for that.