AMERICA JULY 5 - 12, íy^í?vol.- 177 NO. 1

Listening for PropheticVoices in Medicine

The experiences

of those who

are sick and poor

remind us that

inequalities of access

and outcome

constitute the chief

drama of modern

medicine.

TXH

By PAUL FARMER

HE OLD TESTAMENT PROPHETS cannoi have had a very easytime of it. and not because their primary work was as clairvoyants or seers.The prophetic voice was more often raised in protest against the social coa-ditions endured by widows, orphans and the poor majority. These voiceswere niised in opposition to what may be termed structural violence—thepoverty and inequality that bring opulent excess to a few and misery tomany. Many prophets were regarded by their literate contemporaries ascertifiably mad; few were heeded.

In many ways the prophets failed, for the inequities they deplored con-tinue to run their course. A growing and globalizing miirket economy hasnot lifted, as promised, all boats. Instead, increasing wealth has lead toentrenched excess and squalor. We read in the newspapers of famine andstrife, but also of the stunning success of luxury items. The RoaringNineties are notable for waiting lists for S4.000 handbags and $44,000watches; $75,000 cars seil like hotcakes. Inequality is very mticb the sijmof our times.

It is clear that modem biomedicine. like the global economy, is booming.Never before have the fruits of basic science been so readily translated intolife-promoting technologies. But inequalities of access and outcomeincreasingly dominate the health care arena. In the United States, investcir-owned health plans have rapidly transformed the way we confront illness.Although there is mtich talk of cost effectiveness or reform, the principalfeature of lhe.se transformations has been the consolidation of a major indus-try with the same goal as other industries-—to tum a profit. One of thecheerleaders for this new. soulless trend put it this way: "There is no longera role for non-profit health plans in the new health care environment." t)owe recognize, in this "new health care environment." today's prophetic voic-es? Unless we make our world a place free of structural violence, we cannotsuppress these voices. We can only ignore them. Tlie experiences of those

PAUL FARMER, M.D., is assistant professor at Harvard Medical Schooland the medical director of the Clinique Bon Sauveur in Cange. Haiti. Thisessay is based on an address given in Corpus Christi. Te.\., on March 15 tothe Catholic Health Association of America and the National Associationof Catholic Chaplains,

AMERICA JU^Y 5,1997

who are sick and poor—sick, often enough, because they arepoor—remind us that inequalities of access and outcomeconstitute the chief dratna of modern medicine. In anincreasingly interconnected world, inequalities are btXh localatid global, as examples from my own practice will illus-trate.

Brenda and the Excuses of Our Times.Brenda, a native of Boston, has advanced AIDS. She

doesn't know how she acquired H.I.V.—increasingly, peopledon't know—but she guesses it wasfrom the father of her first child, becausehe had used heroin. Brenda herself neverdid, A mere 28 years old, she is alreadyidtnost blind. She weighs 89 pounds andhas great difficulty taking care of herchildren, even with help. Her goal, sheonce said, was to see her oldest childgraduate from high school. In recentyears, she has downgraded her aspira-tions. Since Andrew is now seven, she'dlike to see him graduate from junior highschool.

This year, however, Brenda allowedherself to hope. She had heard about thepowerful new combination of drugs thatseemed to revive even the near-dead; and she herself knew awoman with AIDS who. on these drugs, went from bedrid-den to buoyant—at leasL that was Brenda's impression—ina matter of months.

At last, thought Brenda. who while taking other antiviralmedications had suffered through side effects ranging frompancreatitis to unremitting nausea only to leam that thesemedications had little demonstrable effect on the course ofher disease.

But there was a glitch. In the course of her previous,ineffective therapies, she had shown herself to be "non-compliant." This label made it difficult for her to participatein the clinical trials that are so often the only affordablesource of these drugs. The New York Times recently report-ed that doctors are now rationing protease inhibitors, savingthem lor those deemed likely to comply.

There is no doubt that my colleagues do this with the bestof intentions, but there are serious flaws in such strategies.First, research has shown that physicians are poor predictorsof compliance with prescribed regimens. Second, those leastlikely to comply are usually those least able to comply. Will-ful noncompliatice is what we term a "'diagnosis of exclu-sion."

Third, rationing effective therapies can actually serve todeepen the gaps between the rich and the poor. If tnargimil-ly effective treatments for H.I.V. disease are not available tothe poor, then their health suffers only marginally. But ifhighly effective therapies—such as the recently developedantiviral cix'ktails—are unavailable to those living in pover-ty, then class-based inequalities of outcome worsen withtime. Through such mechanisms, our failure to make sure

that people like Brenda receive sueh médications is tanta-mount to "structural sin."

The excuses of our times are often ingenious. The WallStreet Jouma! ran a front-page story under the title "PreciousPills" about the ptx)tease inhibitors and responses to them. Asubheading read, "Gotta Clean Up Your Act." But what,exactly, do I tell my patients, many of whom, like Brenda,are as likely to lack day planners as they are to lack daycare? If I could acknowledge that their lives have beendamaged by racism and, often enough, gender inequality, if

only I could say this in an appropriateway, I would. If I could tell them that

I they deserved the best medical care I candeliver. I'd tell thetn that. ttx). Then; iiremiuiy things I would like to tell them, butsomehow I cannot bring myself to rec-ommend that they "clean up their act."

Perhaps it's time that we clean up ourown acts. When my colleagues and 1published Women. Poverty ami AiDS. weberated fellow physicians and academicsfor our collective failure to appreciatehow gender inequality iuid poverty wereputting millions of women at risk forH.I.V. infection. Although we'vereceived many supportive letters in

response to our book, some schohtrs resented having theirwork criticized for not being mindful enough ot the plight ofpoor women. But the entiie point of tlie volume was to ana-lyze massive failure—the public-health failure to preventAIDS from becoming, in a single generation, the leadingcause of death of young women living in poverty; the failureon the part of researchers to tnake clear the mechanisms bywhich poverty and gender inequality create situations of riskfor poor women; the failure of physicians to insist that H.I.V.care be made available to poor women; the failure to careenough about a catastrophe that increiisingly affects largelythe poor. Indeed, hy what measure is the AIDS pandemicamong women not a failure?

Brenda eventually got her medications, and she's doingbetter. If you'll pertiiit a bit of sarcasm, it is almost as if shehad a treatable infectious disease.

Sanott and the Disposable Millions.I spend half my time seeing patients in the Clinique Bon

Sauveur in Cange, Haiti, The facility serves largely the land-less poor and the peasants of the central plateau's arid high-lands. Sanoît showed up in the clinic looking like a littlestick figure. He was already nine, but weighed only 35pounds. He was coughing and had a fever, and so wasthought to have pneumonia. Antibiotics were prescribed,and it was suggested that he be brought back to the clinic ina couple of weeks for follow-up.

Two weeks to the day. Sanoît's mother brought him back.He was worse, a mere skeleton, This time a chest X-ray wastaken, and he was diagnosed with tuberculosis.

"Am I going to die?" he asked quietly, as if cuiious.

AMERICA JULY 5, 1997

"No. you're not going to die."Satioîl. 1 recall, looked doubtful. I know little about

child psychology; but this boy, I believe, had seen enoughdeaths to conclude that he was not going to survive tuber-culosis. And why shouldn't he think that? Tuberculosisalmost killed his mother; it had taketi the lives of many heknew.

Of course, Sanoît did not die. He recovered beautifully,•'altnost as if he had a treatableinfectious disease." The samecannot be said for the other"disposable" people. Fiftyyears after the introduction ofaltnost 100 percent effectivecotnbinatiori therapy, tubercu-losis remains the world's lead-ing infectious cause of pre-ventable deaths, if the WorldHealth Organization is correct,tuberculosis last year killedsome 3 million people—morethan died from complicationsof H.I.V. infection and perhapsmore thati have died in anyone yeiir since I9(X). This hashappened in almost completesilence, in large part becausetuberculosis victims are usual-ly ptwr. This point has recentlybeen underlined by Lee Reich-man, who notes that, if tuber-culosis were taken seriously, discussions about it "wouldhave to be moved to the local football stadium to accommo-date all interested parties."

Although calls for patients to clean up their acts also ringout in the tuberculosis literature, it is again clear that thoseleast likely to "comply" with treatment recommendationsare precisely those least able to comply. Thus are the poor—people like Sanoit ;md his mother̂ — p̂ut at risk of tuberculo-sis, at risk of having no access to treatment and at risk ofbeing blamed for their own misfortune and for infectingothers.

Maribel and the Logic of Cost Effectiveness.Maribel is a 24-year-old woman who formerly worked

as a nurse's aide in a public health clinic in Lima. Peru. Sheused to love to care for children, she told me. especiallythose with tuberculosis, since they were often shuntied.When I first met her last sumtner, Maribel was gravely illwith multidrug-resistant tuberculosis (MDRTB). She wasemaciated, wasted by daily fevers and drenching sweats.Part of her right lung, destroyed by the disease, had beenremoved; the other was severely affected. She'd been toldnothing futther could be done. In keeping with World HealthOrganization recommendations, it had been determined thatthe treatment of MDRTB is not "cost-effective" in poorcountries.

In the name of

cost effectiveness we

cut back health benefits

to the poor. We miss

our chance to

heal.

Maribel, needless to say, did not much appreciate thislogic. There were, in fact, antibiotics to which her infect-ing isolate was susceptible. When she received them lastSeptetnber. she stx)n began to respond. ("It's almost as ifshe had a treatable infectious disease"). In January shehad been able to attend a picnic at the house of anotherpatient. She was even able to dance a bit and seemed toenjoy her ftrst outing in years. Maribel seemed particular-

ly pleased that her treattiientand improvetiient occurredagainst a tide of official opin-ion. She announced her inten-tion to prove this opinion mis-guided.

So imagine tny dismaywhen the Haitian priest withwhom I work poked his headinto the clinic and announcedthat tny Peruvian co-workershad called Port-aj-Princelooking for me. Maiibel was,he reported, "on the brinkof death." My advice wasrequested by colleagues inLirna. But it takes fftur hourslo reach a telephone in Port-au-Prince, and then.' was noway I could leave the patientsin Cange. Surveying thecrowded ward, the priestobserved, "It looks like all we

can send Maribel is our prayers."That Saturday the team in Peru looked for a clinic that

could provide the intensive citre that Maribel would requireif she was to survive the weekend. Some clinics simplyrefused to admit a patient with MDRTB. Others refused tokeep her on her anti-tuberculosis medications. Finally a dealwas struck, and Madbel was s(K)n receiving mechanicallyassisted ventilation in a posh Catholic clinic in central Lima.News of this reached me by the radio linking the clinic toPort-au-Prince.

I marvelled at what was happening. It was easy to see acomplex network of concern reaching from Lima north toBoston, and back down, by an erratic radio, to a small vil-lage in rural Haiti. The next day a Mass was offered forMaribel. The priest had never seen mechanical ventila-tion, but prayed for her to "respond quickly and breatheon her own."

This is precisely what Maribel did. Shortly after her intu-bation, she was diagnosed with acute bacterial pneumonia.She responded to antibiotics iuid. increasingly feisty, "selfextubated" a few days later. A couple of days afier that, Iwas by her side. She was. she declared, tm mUagm. a mira-cle. She was detennlncd to get better, and did not fail tomention that her survival would be a rebuke to those whodeclared cases like hers to be hopeless or their treaiment notcost-effective.

10 AMERICA 1ULY5, 1997

Opposition to the aggressive treatment of MDRTB indeveloping countries is justified as public-health Realpoli-tik, but careful systemic analysis calls into doubt suchreceived wisdom. Although there is obvious confirmationof our failure to confront tuberculosis effectively, there arefew data to support the hypothesis that there are insuffi-cient means to cure al! tuberculosis cases everywhere,regardless of susceptibility pattems. Rather, tbe degree ofaccumulated wealth is alto-gether unprecedented, but thisaccumulation has occurredin tandem with growing in-equality. Simply followingthe money trail reveals boththe degree of available capitaland also the degree to whichresource flows are transna-tional. In 1996. Peru madedebt payments, largely to U.S.banks and the internationalfinancial institutions, of $1.25billion—over 14 percent oftotal Governtnent expendi-tures. Projections for the com-ing year are that debt pay-ments will total S 1.85 billion,which will represent 18.7 per-cent of ail Government out-lays. In Ihe last three decade.s,the gap between rich and poorcountries has doubled.

In the global era, we often engage in fraudulent analysesof where the boundaries are of our "communities" andwhere they fit in larger social webs. If I were one of the"Masters of the Universe," to use Tom Wolfe's phrase, I'diry and get folks like us to adopt a motto such as "thinkglobally, act locally." In terms of analysis, those wbo directmodem commerce are far ahead of us. They understand theiirtitlciality of borders: they exploit the whole world. Mean-while, die forces of healing lue trammeled by parochiahsmsof place and creed.

Maribel is still sick with a terribly resistant strain of TB.Our efforts on her behalf iTiay ultimately fail, but they willnot have failed to call into question the cynical calculus bywhich some lives are considered valuable and othersexpendable.

Health Care "Reforms" Versus Progress With Justice.How do these three stories fit into the local moral worlds

of our clinics and hospitals? All illustrate the fact that withall our technological power, our magnetic resonance scansand our protease inhibitors, we allow not just the continua-tion but rather the enlremhment of inequalities. The justifi-cation for this sad state of affairs is usually economic. We'retold that we live in a time of "shrinking health resources."But is this really so'? Look at profits in the managed carecompanies. The Wall Street Joumal described in December

If we fail

to resist the current

trendSy we risk

sapping biomedicine

of its vast power

and ourselves of our

humanity.

1994 these companies as "money machines so awash in cashthat they don't know what to do with it all." The New YorkTimes noted in April 1995: "Penny Pinching HMO's ShowTheir Generosity in Executive Paychecks." The C.E.O. ofone miuiaged care company received a salary of $370.604and stock options worth over $15 million; other, more dra-matic examples were offered. One detractor of managedcare, Leon Eisenberg of Harvard Medical School, asks:

"Where did the money comefrom? Was it simply from'greater efficiency'? Or did asignificant part of it comefrom care not given?" Eisen-berg trenchantly concluded,"In a profit-driven, competi-tive market place, managed'care' is an oxymoron."

Again, perhaps it is wephysicians who need to cleanup our acts. Increasingly, theinequalities that we are calledto countenance are inimical togood medicine. Even stop-gapmeasures, like the Federal pTo-gram designed to make AIDSand tuberculosis therapiesavailable to the poor, are underheavy fire from politicianswho guess, perhaps; rightly,that they and theirs are neverlikely to need such dnigs.

In the face of cheek-by-jowl bounty and penuiy. whereare the prophetic voices in medicine? Instead of havingaccess issues front and center, we have foggy-minded cri-tiques of technology. Take a look at "medical ethics," a sta-ple of medical school cunicula. What is defined, these days,as an ethical issue? End-of-Hfe decisions, medico-legalquestions of brain death, organ transplantation and medicaldisclosure dominate the published literature. In the hospital,the "quandary ethics of the individual" constitute the bulk ofdiscussion of medical ethics. There is dead silence in therealm of medical ethics when it comes to acce.s.s for poorpeople, especially those who, like Brenda and Siinott andMaribel. can be hidden away.

Some involved in ethics would have you believe thattechnological advances are in and of themselves bad. Ibelieve the Luddites are dead wrong. We should all haveaccess to the fruits of nuxlem technology, especially thosewho most need it. As health care "refonns" move forwanJ,this technology is increasingly at the disposal of tliose whocan pay for it, not of those who need it most. This. I wouldargue, is the great drama of medicine at the end of this cen-tury. And ihis is the challenge for all people of faith andgood will in ihese dangerous times.

Rediscovering Social Justice.It stands to reason that, as beneficiaries of growing

12 AMERICA 1UI.Y5. 1997

inequality, we don't like to be reminded of misery andsqualor and failtire. I recently read of attempts in England toget rid of the cros.s. Too disturbing. Inappropriate. A downer.Other symbols were suggested. How about a candle? Aftsh? Anything other than this stark reminder that people arebeing crucified throughout the world.

Yet the voices, the faces, the suffering of the sick and thepoor are all around us. Can we see and hear them? Well-defended against troubling incursions of doubt, we the privi-leged are precisely the people most at risk of remainingoblivious, since this kind of suffering is not central to ourown personal experience.

Can we tune in to the prophetic voices in our niidst?One of my students, Anthony Mitchell, is a preacher; andhe recently shared with me one of his sermons. Deliveredlast Dec. 29 at the Greater Piney Grove Baptist Church inAtlanta, Ga., the homily is titled "Who Has the LastWord?"

We live in a time where Herod is in control.... If youstand up and do as John the Baptist did. say a few sim-ple words—such as 'That is not right; this is not howit should be done; this is not how we should treat oneanother; this is not how we should live"—you are risk-ing death. Sometimes we forget that the Christian lifeis a risky life, a life that might cost you your own lite.This is the context of the text, and iilso the context of amiracle..,. This is the Gospel. This is where it ispreached, in dangerous times.

These are indeed dangerous times, especially if one isengaged in efforts to serve better the destitute sick. In thename of cost effectiveness we cut back health benefits to thepoor, who are more likely to be sick than those who are notpoor. We miss our chance to heal. In the setting, we are told,of scarce resources, we imperil the health safety net. In thename of expedience, we miss our chance to be humane andcompassionate.

Herod remains in control, but this is also the context ofthe miracle. That is, it is in precisely such contexts that wehave the privilege of reas.serting our humanity. Against atide of utilitarian opinion and worse, we are offered thechance to insist, this is not how it should be done. Indeed,this is always what healers were called to say, but now thestakes are even higher. At the close of the millennium, theworld is a very different place than when the prophetsroamed the land. Medical technology has changed. We haveincreased diagnostic capabilities, great laboratories andeffective medications for a host of diseases.

Certainly these developments are expensive. Certainlyexcess costs must be curbed. But how can we glibly useterms like "cost effective" when we see how they are per-verted in contemporary parlance? You want to help thepoor? Then your projects must be self-sustaining or costeffective. You want to hurt the poor? Hey, knock yourselfout; the sky's the limit.

Similar chicanery is used with a host of other terms,

ranging from "appropriate technology" to "community."Through analytic legerdemain—the world is composed ofdiscretely bounded nation states, some rich, some poor, andeach with its unique destiny—we are asked to swallow whatis, ultimately, a story of growing inequality and our willing-ness to condone it.

Is this the best we can do? Perhaps we need a new lexi-con for this "new health care environment," or perhaps weneed to rediscover an old one. A compelling lexicon ofsocial medicine must be linked to a retum to social justice,to a struggle against the tide of opinion. Bi"yan Stevenson ofAlabama's Equal Justice Initiative is "convinced that justiceis a constant struggle, and where you find no struggle, youfmd no justice." Although Stevenson is referring to law. thesame holds for modern medicine. If we fail to resist the cur-rent trends, we risk sapping biomedicine of its vast powerand ourselves of our humanity. If we lived in a utopia, sim-ply practicing tnedicine would be enough. But we live in adystopia. Increasingly, in this "new environment," inequali-ties of access and outcome characterize medicine. Theseinequalities could be the focus of our collective action asmorally engaged members of the healing professions,broadly conceived, Eor we have before us an awesomeresponsibility—to prevent social inequalities from beingembodied as bad health outcomes. We do have the technol-ogy. D

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