The Story Of A Poor Family Afflicted With Multi-Drug-Resistant Tuberculosis
by Paul Farmer

Corina Bayona was born in 1942 in Huanuco, in Peru's Central Sierra. Like most of the region's poorer peasants, her parents found it increasingly difficult to wrest a living from the unforgiving countryside. When Corina married Carlos Valdivia, both had dreams of escaping the harshness of rural life. A son, Jaime, was born before Corina was twenty.

In 1974, the three of them emigrated to Carabayllo, the new and sprawling slum north of Lima, one of Latin America's most rapidly growing cities. The edges of the settlement consisted of "invasiones" - dry and dusty slopes dotted with ramshackle shelters built first of straw and cardboard and plastic and then rebuilt in dun-colored brick only years later, when the squatters no longer feared that they would be removed by force. To settlers and to visitors alike, the steep and treeless fringes of Carabayllo looked like the surface of the moon.

Soon, Corina, Carlos, and Jaime moved into a one-room house. During the 1970s and 1980s, Corina worked as a maid in a schoolteacher's house; Carlos worked as a night watchman in the industrial area south of Lima. Their house eventually had electricity, if no running water, and Corina and Carlos were able to send Jaime to high school. Carlos recalls this time as relatively secure, despite the political violence that often marked the city. Unemployment was high in Carabayllo, although not as high as it would later become, and they were lucky to have two jobs, especially since their son's new wife and baby precipitously added two more mouths to feed in the mid-1980s.

At some point in 1989, Corina began coughing. Initially, she attempted to treat herself with herbal remedies, primarily because she was unable to visit the clinic. Although a public health post was based nearby, it was closed during the hours that Corina was in Carabayllo. What Corina lacked most was time: it took her more than two hours on public buses to commute to work each day. When her cough worsened, she finally went to the post, where she was diagnosed and treated for tuberculosis.

In August of 1990, shortly after Alberto Fujimori was elected president of Peru, the urban poor underwent what they later termed fujishock - the rapid implementation of some of the harshest economic policies in the Western Hemisphere. Inflation spiraled, and public services, including health care, were trimmed back sharply. Soon Carlos was out of work.

In the midst of all these problems, Corina began coughing again. Once again, she returned to the health post. She was again tested for tuberculosis, but her sputum specimen was misplaced. In April of 1991, after more delays and worsening symptoms, Corina was again formally diagnosed with relapsed pulmonary tuberculosis. Given the health post's inconvenient hours and long waits-and also, as one of her doctors noted, the significant stigma associated with tuberculosis-she began receiving treatment at a private clinic.

What Corina gained in privacy and convenience she lost in increased costs. As was not uncommon in these months after fujishock, the family's meager savings were soon expended; Corina was unable to complete her treatment. As her husband recalls it, they could afford to buy only two of the four drugs prescribed. Corina's condition worsened, and she became unable to work. When she next sought cure, this time in a public health center in Carabayllo, physicians there discovered that her symptoms did not improve with standard tuberculosis treatment. When her condition worsened still further, she was advised to seek care in a hospital.

Corina first presented to a private university teaching hospital, but she was unable to purchase the medications and supplies prescribed. She was referred to the public facility not far away. At the private hospital, Corina had been told that she would have to pay for supplies; at the public facility, where supplies were extremely scarce, she was told that she must bring her own-including syringes, gloves, and gauze. Further, Corina had the ill fortune to arrive at this hospital just before the national health workers' strike, which was called in response the new government's massive cuts in public spending. During the strike, most outpatient treatment was simply suspended; Corina received, in essence, no care for her tuberculosis during this time.

In August of 1991, shortly after the strike ended, Corina returned for her medications. A physician roundly upbraided her: "Senora, it's your own fault that you did not complete your treatment. Why didn't you come before?" Brusquely, he sent her to yet another facility on the grounds that she was not from that hospital's catchment area. This third hospital, though close to the Valdivia household, was not highly regarded, and Corina complained that there too she received a cool welcome. She was summarily referred back to the local health post for treatment. Scarred by her interactions with the health care system, Corina resolved not to return to seek care at the local health post.

Carlos Valdivia was troubled by this resolution, for Corina continued to worsen. She coughed incessantly and became short of breath, even at rest. Her son, still living at home, worried for his mother. "You should go back to the health center", he pleaded, "so that they will cure you." But soon Jaime began to cough as well. He didn't go to the health center either, because he didn't want to be treated the way they had treated his mother. Eventually Jaime sought treatment at the local post, but he too failed to respond to the standard tuberculosis medications.

For the next three years, Corina and Jaime lived with active pulmonary tuberculosis. Their household, wracked by coughing, was increasingly tense. Jaime's wife left, leaving behind their two infants, and Carlos began to drink. Late in the summer of 1994, Corina began to cough up blood. When at last she sought care for this condition, physicians documented that her infecting tuberculosis strain had become resistant to all first-line tuberculosis antibiotics except ethambutol. For reasons that remain unclear, the doctors then prescribed those same ineffective medications for her once again. Corina of course failed to improve with these antibiotics-and worse, she had a life-threatening reaction to one of them. Shortly thereafter, Corina was advised to give up completely on her "futile" efforts to treat her disease.

But Corina and her family were not so easily dissuaded. Upon inquiring, they learned that other drugs were available; although the public health system could not provide them free of charge. Among the drugs prescribed by a lung specialist were two antibiotics, ciprofloxacin and ethionamide, with an estimated cost of 500 soles a month-eight times her husband's income when he'd been fortunate enough to have a job.

Carlos Valdivia, seeing his family dying before him, each month searched high and low for 1000 soles for his wife and son, because by then it had become clear that Jaime also had drug-resistant tuberculosis. Sometimes Carlos succeeded; often he did not. "What unemployed person in Carabayllo could find 1000 soles a month?" reflected Carlos sadly. His son died in December of 1995, leaving behind two small children.

Corina, finding herself the primary caregiver for her grandchildren, found new reasons to fight for survival. She said, "I thought that I'd lived long enough until I had these to children to take care of. All I ask is for God to let me live in order to take care of them."

In February 1996, one week before Corina died, Carlos went to the health post with yet another sputum sample. The plan, he knew, was to find other medications that his wife might be able to take. Suddenly however, Corina became severely short of breath. Carlos took her to the clinic, and an auxiliary nurse tried to place her in two different hospitals. In the emergency room of the teaching hospital, the staff informed Corina: "We have nothing to offer you; your case is too chronic." After that, Corina stated that she would not return to the local public hospital, to which she had been again referred. "I would rather wait for the end at home than go back there," she said. This time, she did not have long to wait.

Corina typifies the experience of Latin Americans living with multidrug-resistant tuberculosis (MDRTB). Although she may have been originally infected with MDRTB, it is equally probable that she had drug-sensitive disease, and developed resistance during the course of intermittent and poorly conceived therapy. Her son Jaime, however, was likely to have been infected with MDRTB from the beginning. How common are such experiences in Peru? The country has been praised for its greatly improved tuberculosis-control program, which has systematized the diagnosis and treatment of the disease, made standard tuberculosis antibiotics more widely available, and instituted directly observed therapy. But Corina did not fit in to the prevailing algorithm, which does not take into account the rising rates of drug-resistant tuberculosis. Standard tuberculosis antibiotics are ineffective against MDRTB. If the attention is focused on the detection and treatment of drug-sensitive tuberculosis, and cases such as Corina's are ignored, the incidence of MDRTB will escalate. Corina was sick and infectious for at least six years, as Jaime's tragic death reveals. She worked during most of those years, taking crowded buses across Lima twice a day-possibly infecting hundreds of people with drug-resistant tuberculosis.

Thankfully, due to the generosity of the Bill and Melinda Gates Foundation, we are developing a program to cure all MDRTB patients in Peru within the next five years.


Paul Farmer, MD, PhD, is a medical anthropologist whose work draws primarily on active clinical practice: he divides his clinical time between the Brigham and Women's Hospital (Division of Infectious Disease) and a small charity hospital in rural Haiti. Through Partners In Health, the public charity he helped to found, his work has focused on the prevention and treatment of diseases disproportionately afflicting the poor. The Program in Infectious Disease and Social Change, which Farmer runs along with his colleagues in the Department of Social Medicine, has pioneered novel, community-based treatment strategies for sexually transmitted infections (including HIV), drug-resistant typhoid, and tuberculosis in resource-poor settings.