health medicine without doctors - health … · july 19, 2004 newsweek versity teaching hospital,...

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BY GEOFFREY COWLEY T HE FIRST PART OF NOZUKO MAVUKAS STORY IS NOTHING unusual in sub-Saharan Africa. A young woman comes down with aches and diarrhea, and her strong limbs wither into twigs. As she grows too weak to gather firewood for her family, she makes her way to a provincial hospital, where she is promptly diagnosed with tuberculosis and AIDS. Six weeks of treatment will cure the TB, a medical officer explains, but there is little to be done for her HIV infection. It is destroying her immune system and will soon take her life. Mavuka becomes a pariah as word of her condition gets around the community. Reviled by her NEWSWEEK JULY 19, 2004 In Africa, just 2 percent of people with AIDS get the treatment they need. But drugs are cheap, access to them is improving and a new grass- roots effort gives reason to hope. Health MEDICINE WITHOUT DOCTORS parents and ridiculed by her neighbors, she flees with her children to a shack in the weeds beyond the village, where she settles down to die. In the usual version of this tragedy, the young mother perishes at 35, leaving her kids to beg or steal. But Mavuka’s story doesn’t end that way. While waiting to die last year, she started visiting a two-room clinic in Mpoza, a scruffy village near her home in South Africa’s rural Eastern Cape. Health activists were setting up support groups for HIV-positive villagers, and Médecins sans Fron- tières (also known as MSF or Doctors Without Borders) was spearheading a plan to bring lifesav- ing AIDS drugs to a dozen villages around the im- poverished Lusikisiki district. Mavuka could hard- ly swallow water by the time she got her first dose of anti-HIV medicine in late January. But when I met her at the same clinic in May, I couldn’t tell she had ever been sick. The clinic itself felt more like a social club than a medical facility. Patients from the surrounding hills had packed the place for an afternoon meeting, and their spirits and voices were soaring. As they stomped and clapped and sang about hope and survival, Mavuka thumbed through her treatment diary to show me how faithfully she’d taken the medicine and how much it had done for her. Her weight had shot from 104 pounds to 124, and her energy was high. “I feel strong,” she said, eyes beaming. “I can fetch water, wash clothes—everything. My sons are glad to see me well again. My parents no longer shun me. I would like to find a job.” It would be rash to call Nozuko Mavuka the new face of AIDS in Africa. The disease killed more PHOTOGRAPHS BY JONATHAN TORGOVNIK FOR NEWSWEEK

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Page 1: Health MEDICINE WITHOUT DOCTORS - Health … · JULY 19, 2004 NEWSWEEK versity Teaching Hospital, the 1,600-bed facility at the forefront of the country’s two-year-old treatment

BY GEOFFREY COWLEY

THE FIRST PART OF NOZUKO MAVUKA’S STORY IS NOTHINGunusual in sub-Saharan Africa. A young woman comes down withaches and diarrhea, and her strong limbs wither into twigs. As shegrows too weak to gather firewood for her family, she makes herway to a provincial hospital, where she is promptly diagnosed withtuberculosis and AIDS. Six weeks of treatment will cure the TB, a

medical officer explains, but there is little to be done for her HIV infection. It isdestroying her immune system and will soon take her life. Mavuka becomes apariah as word of her condition gets around the community. Reviled by her

N E W S W E E K J U L Y 1 9 , 2 0 0 4

In Africa, just 2 percent of peoplewith AIDS get the treatment theyneed. But drugs are cheap, access tothem is improving and a new grass-roots effort gives reason to hope.

Health

MEDICINEWITHOUTDOCTORS

parents and ridiculed by her neighbors, she fleeswith her children to a shack in the weeds beyondthe village, where she settles down to die.

In the usual version of this tragedy, the youngmother perishes at 35, leaving her kids to beg orsteal. But Mavuka’s story doesn’t end that way.While waiting to die last year, she started visiting atwo-room clinic in Mpoza, a scruffy village nearher home in South Africa’s rural Eastern Cape.Health activists were setting up support groups forHIV-positive villagers, and Médecins sans Fron-tières (also known as MSF or Doctors WithoutBorders) was spearheading a plan to bring lifesav-ing AIDS drugs to a dozen villages around the im-poverished Lusikisiki district. Mavuka could hard-ly swallow water by the time she got her first doseof anti-HIV medicine in late January. But when I

met her at the same clinic in May, I couldn’t tellshe had ever been sick. The clinic itself felt morelike a social club than a medical facility. Patientsfrom the surrounding hills had packed the placefor an afternoon meeting, and their spirits andvoices were soaring. As they stomped and clappedand sang about hope and survival, Mavukathumbed through her treatment diary to show mehow faithfully she’d taken the medicine and howmuch it had done for her. Her weight had shotfrom 104 pounds to 124, and her energy was high.“I feel strong,” she said, eyes beaming. “I can fetchwater, wash clothes—everything. My sons are gladto see me well again. My parents no longer shunme. I would like to find a job.”

It would be rash to call Nozuko Mavuka the newface of AIDS in Africa. The disease killed more

PHOTOGRAPHS BY JONATHAN TORGOVNIK FOR NEWSWEEK

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Page 2: Health MEDICINE WITHOUT DOCTORS - Health … · JULY 19, 2004 NEWSWEEK versity Teaching Hospital, the 1,600-bed facility at the forefront of the country’s two-year-old treatment

RROOCCKKIINN’’:: InLusikisiki,treatment issomething tosing about

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N E W S W E E K J U L Y 1 9 , 2 0 0 4

than 2 million people on the continent lastyear, and it could kill 20 million more by theend of the decade. The treatments that havemade HIV survivable in wealthier parts ofthe world still reach fewer than 2 percent ofthe Africans who need them. Yet mass salva-tion is no longer a fool’s dream. The cost ofantiretroviral (ARV) drugs has fallen by 98percent in the past few years, with the resultthat a life can be saved for less than a dollar a day. The Bush administration and the Geneva-based Global Fund to Fight AIDS,TB and Malaria are financing large interna-tional treatment initiatives, and the WorldHealth Organization is orchestrating a glob-al effort to get 3 million people onto ARVs bythe end of 2005—an ambition on the scale ofsmallpox eradication. What will it take tomake this hope a reality? Raising more mon-ey and buying more drugs are only firststeps. The greater challenge is to mobilizemillions of people to seek out testing andtreatment, and to build health systems capa-ble of delivering it. Those systems don’t existat the moment, and they won’t be built in ayear. But as I discovered on a recent journeythrough southern Africa, there’s more thanone way to get medicine to people who needit. This crisis may require a whole new ap-proach—a grass-roots effort led not by doc-tors in high-tech hospitals but by nurses andpeasants on bicycles.

Until recently, mainstream health ex-perts despaired at the thought of treatingAIDS in Africa. The drugs seemed too cost-ly, the regimens too hard to manage. Unlikemeningitis or malaria, which can be curedwith a short course of strong medicine,HIV stays with you. A three-drug cocktailcan suppress the virus and protect the im-mune system—but only if you take themedicine on schedule, every day, for life.Used haphazardly, the drugs foster lesstreatable strains of HIV, which can thenspread. Strict adherence is a challenge evenin rich countries, the experts reasoned, andit might prove impossible in poor ones. Inlight of the dangers, prevention seemed amore appropriate strategy.

Caregivers working on the front lines re-sented the idea that anyone should die forhaving the wrong address. So they set outto prove that treatment could work intough settings, and by 2001 they’d succeed-ed. In a project led by Dr. Paul Farmer ofHarvard, two physicians and a small armyof community outreach workers intro-duced ARVs into 60 villages near theHaitian town of Cange. Around the sametime, MSF teamed up with South Africa’s

Treatment Action Campaign to make thedrugs available in an urban slum calledKhayelitsha. The upstarts simplified thedrug regimens and dialed back on lab tests,and most of the patients were monitored bynurses or outreach workers instead ofphysicians. But none of this made treat-ment less effective. The cocktails worked aswell in the slums as they did in San Francis-co—and the patients were often more stead-fast than Americans about taking theirpills. The obstacle to treatment was not alack of infrastructure, the activists pro-claimed. It was a lack of political will.

The climate has changed since then.Yesterday’s unacceptable risk is today’smoral imperative, and the world’s highest-ranking health authorities are pushing hardto realize it. “We still believe in prevention,”the WHO’s director-general, Dr. Jong-wook Lee, told me during an interview inGeneva this spring. “But 25 million HIV-positive Africans are facing certain death. If

we fail to help them, it can’t be because wedidn’t try.” Since Lee took office last year,staffers in the agency’s HIV/AIDS depart-ment have worked at a furious pace to de-vise a global treatment strategy and helpbesieged countries design programs thatthe Global Fund will pay for. Proposals arerolling in, and the fund is responding favor-ably. Grants approved so far could financetreatment for 1.6 million people over thenext five years.

The trouble is, few of thecountries winning those grants are ready to absorbthem. Their health systemshave withered under austerityplans imposed by foreign cred-

itors. Doctors and nurses have left in drovesto take private-sector jobs or work inwealthier countries. And those left behindare overwhelmed and exhausted. Whiletraveling in Zambia, I visited Lusaka’s Uni-

Health

Geoffrey Cowley will host a Live Talkon curbing AIDS, July 15, at noon, ET, at NNeewwsswweeeekk..ccoomm on MSNBC

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versity Teaching Hospital, the 1,600-bedfacility at the forefront of the country’s two-year-old treatment program. Dr. PeterMwaba, the hospital’s stout, vigorous chiefof medicine, detailed the country’s strategyfor treating 100,000 people (50 times thecurrent number) by the end of next year.Yet his own facility was half abandoned. In1990 the hospital had 42 nurses for everyshift. Today it has 24—and the patients aresicker. “I’ve been here for 30 years,” VioletNsemiwe, the hospital’s grandmotherlyhead nurse, confided as we walked the dimcorridors. “It has never been this bad.”

In an ideal world, the clock would stopwhile countries in this predicament trainedtens of thousands of health professionals,quintupled their salaries and dispatchedthem to underserved areas. But the clock isticking at a rate of 56,000 deaths a week, sothe WHO is embracing a different ap-proach—one rooted in the populism ofCange and Khayelitsha. “AIDS care, as we

practice it in the North, is about elite spe-cialists using costly tests to monitor indi-vidual patients,” says Dr. Charles Gilks, theEnglish physician coordinating the WHO’s“3 by 5” treatment initiative. “I’ve done thatand it’s great. But it’s irrelevant in a placelike Uganda, where there is one physicianfor every 18,000 people and that physicianis busy at the moment. If we’re going tomake a difference in Africa, we’ve got tosimplify the regimens and expand the poolof people who can administer them.”

That’s precisely the agenda that activistsare pursuing in Lusikisiki, the remote SouthAfrican district where Nozuko Mavuka gother life back. When MSF and the TreatmentAction Campaign launched their projectthere last year, the local hospital was per-forming the occasional HIV test but had lit-tle to offer people who were positive—a pop-ulation that includes 30 percent of pregnantwomen. Lusikisiki is the poorest part of thepoorest province in South Africa, but the ac-

tivists used what they found—a strugglinghospital and a dozen small day clinics—tostart a movement. A small team led by Dr.Hermann Reuter, a veteran of the Khayelit-sha project, set up a voluntary testing centerat each site, organized support groups forpositive people and emboldened them tostand up to stigma. Before long, people likeMavuka were donning hiv-positiveT shirts, singing about the virtue of condomsand quizzing each other on the difference be-tween a nucleoside-analogue reverse tran-scriptase inhibitor and a non-nucleoside-analogue reverse transcriptase inhibitor.

By the time the first drugs arrived last fall,people in the support groups were poisednot to receive treatment but to claim it. Theyshared an almost religious commitment toadherence, and some had become coun-selors and pharmacy assistants. Twenty-eight-year-old Akona Siziwe was as sick asMavuka when she joined a support group inLusikisiki last year. Weary of her husband’sincessant criticism (he didn’t like the wayshe limped), she had packed up her 7-year-old son and her HIV-positive toddler andgone home to die with her mom. But herhealth returned quickly when she startedtreatment in December, and she went towork as a community organizer. She nowruns workshops and counsels patients inthree villages. “What’s a good CD4 count?”she asks. “The nurses don’t have time to ex-plain, but people want to know. When Ishare information that can help them,they’re grateful and happy and full of praise.I can’t even sleep because they are knockingon my door! They want testing and treat-ment tonight!”

The Lusikisiki project has only twonurses and two full-time doctors, but it wastreating 255 patients when I visited in May,and people from the villages were flockingto the clinics as the good news spread.Many of them show up expecting a quicktest and a jar of pills, but as the program’shead nurse, Nozie Ntuli, likes to say, “Giv-ing out pills is the final step in the process.”First the patient has to join a support groupand get treated for secondary infectionssuch as thrush and TB. A counselor thenconducts a home study to make sure theperson is ready for a long-term commit-ment. When the supports are all in place,the counselor takes the patient’s case to acommunity-based selection committee.And everyone shares the joy when a patientsucceeds. “I see people transformed everyday,” Ntuli says. “It is a new dispensation.”

This isn’t the first time village volunteershave launched a successful health initiative.“Home-based care” is a tradition throughoutsouthern Africa, and a cornerstone of count-less successful programs. In rural Malawi,

‘‘AA NNEEWW DDIISSPPEENNSSAATTIIOONN’’:: Nothabile Noggotho (left) at home in theEastern Cape, Mavuka (above) near the Mpoza clinic, Reuter (below) with participants in the Lusikisiki project

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minimally trained communityvolunteers manage everythingfrom pregnancy to cholera. Theywork with TB patients to ensureadherence, and they supply vita-mins, aspirin and antibiotics topeople living with HIV/AIDS.When Malawi’s Health Ministrystarts distributing antiretroviralsthrough a national program thisfall, the volunteers will help ad-minister those, too.

They’ll play an especially im-portant role in Thyolo, a desper-ately poor district surroundedby tall mountains and jadegreen tea plantations. Roughly50,000 of Thyolo’s half-millionresidents are HIV-positive, and8,000 have reached advancedstages of illness. When I visitedThyolo this spring, MSF wastreating several hundred ofthem at the local district hospi-tal, a converted colonial-eracountry club run by nurses andclinical officers (non-M.D.swith four years of training). Butthe hospital was in no positionto handle thousands more, evenif the government provided thedrugs. Its two-person AIDSstaff was struggling just to keepup with the MSF program.Many of the untreated patientslived too far away to trek in forroutine visits anyway.

Dr. Roger Teck, a fiftyish Bel-gian physician who runs MSF’sThyolo program, described thepredicament during a bumpyjeep ride from the hospital to theoutlying village of Kapichi,where 20 volunteers were wait-ing for us in a freshly paintedone-room community center. Some were asyoung as 20, others as old as 70. After anhour of prayers and introductions and soul-ful choral chants, the group’s leader, 49-year-old Kingsley Mathado, peppered us withfacts about the 30 villages in his area (3,000people living with HIV, 500 in need of treat-ment) and described the volunteers’ pro-gram for supporting them. When the government drugs reach Thyolo district hos-pital, the patients will still have to walk a halfday to queue up for an exam and an initialtwo-week supply. They’ll also have to returnfor their first few refills so that a nurse ordoctor can see how they’re responding. Butthe volunteers will take over as soon as pa-tients are stable, refilling prescriptions froma village-based pharmacy and charting ad-herence and side effects.

Could this strategy work on a grandscale? Lay health workers are already amainstay of large-scale TB initiatives, andthe Malawian government has assignedthem a big role in AIDS treatment as well.The country’s nascent ARV program uses aregimen simple enough for anyone to ad-minister after a week of intensive training(three generic drugs in one pill—no substi-tutions). Physicians from Malawi’s Ministryof Health are now traveling the country toconduct training courses for lay healthworkers. The first drugs should arrive in thefall. “We’ve taken a radical leap to ensurereal access,” says Dr. William Aldis, theWHO’s Malawi representative and one ofthe plan’s many architects. “We’re either go-ing to win a Nobel Prize or get shot.”

Malawi’s challenge is to foster the kind

of engagement that has madetreatment so effective in placeslike Cange, Khayelitsha andLusikisiki. If 25 years ofHIV/AIDS has taught us any-thing, it’s that grass-roots in-volvement is critical. “One setof characteristics runs throughnearly all of the success stories,”the London-based Panos Insti-tute concludes in a 2003 reporton the pandemic: “ownership,participation and a politicizedcivil society.” No one denies theneed for trained experts tomanage programs and handlemedical emergencies. But peo-ple from affected communitiesare often better than experts atraising awareness, shatteringstigmas and motivating peopleto take charge of their health.Reuter, the Lusikisiki project’sdirector, recalls an experimentin which doctors teamed upwith activists to extend a hospi-tal-based ARV program intocommunity clinics in the CapeTown slum of Gugulethu,where access would be easierand peer counselors could playa bigger role. The ghetto-basedpatients achieved 93 percentadherence during the first year.The hospital’s program hadnever topped 63 percent— a rate Reuter dismisses as“American-style adherence.”

With access to treatment,millions of dying people couldsoon recover as dramatically asNozuko Mavuka did inMpoza—and their salvationcould revive farms, schools andeconomies as well as families.

But there are hazards, too, and drug resist-ance isn’t the only one. Successful ARVtherapy expands the pool of infected peoplesimply by keeping people alive. Unless thesurvivors can reduce transmission, the epi-demic will grow until the demand for treat-ment is unmanageable. “We can’t focusblindly on treatment,” Teck mused as ourjeep lurched away from Kapichi. “If wedon’t reduce the infection rate, we’re goingto end up in a nightmare situation.” The pa-tients and counselors in the clinics I visitedweren’t singing and stomping only aboutpills. They were celebrating a shared com-mitment to ending what is already a night-mare. The rest of the world needs to lockarms with them.

Reporting for this story was supported by a grant from the Henry J. Kaiser Family Foundation

Health

OONN CCAALLLL::Ntuli attends to a patient

NEWSWEEK JULY 19, 2004 © 2004 NEWSWEEK, INC. [email protected]

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