Caved Lungs

By Annie Theriault*

—  Koch’s bacillus (the perverse protagonist in tuberculosis) finds in poverty, overcrowding, malnutrition, injustice and social exclusion all the conditions that it needs to spread out. And Peru is one of its favorite destinations. Nothing to be proud of. —

María Gonzales, 25, caught one of the most resistant strains of Mycobacterium tuberculosis, or Koch’s bacillus, to break out in Peru.  She still asks herself where she got it.  It is multidrug-resistant, they tell her — most antibiotics no longer have any effect on her sickness. And to be cured, she will have to swallow 19 pills and take one injection every day for the more than two years that the treatment will last.

Tuberculosis, especially in its most dangerous and resistant forms, has by no means been eradicated.  However, the gravity of the situation —which some physicians describe as an uncontrolled epidemic— is not reflected in the measures taken by the authorities.  In fact, the treatments designed and implemented in the 1990s, with results that were not only catastrophic but also hidden, left Peru with the highest rates today of multidrug-resistant (MDR) and extremely multidrug-resistant (XDR) TB on the subcontinent.  Not even devastated Haiti’s rate is higher than Peru’s.

From my cough to yours
Koch’s bacillus is an opportunist: it prefers to attack the weakest bodies, those who are already suffering from malnutrition, diabetes, drug addition, alcoholism or HIV/AIDS.  It spreads and is contagious in closed, overcrowded areas with little light and poor ventilation.  It lives, above all, alongside urban and capital city poverty, in a city in which the highest rates of economic growth and income inequality coexist.

“The lack of education, work and decent housing are factors that perpetuate the inter-generational transmission of TB,” says pulmonologist Oswaldo Jave Castillo, the former national coordinator of Peru’s TB program. “It is not an exclusively biomedical problem. In other words, not all of it can be solved with pills.”

It is estimated that more than 35,000 Peruvians host the Mycobacterium tuberculosis in their lungs, particularly adults and young adults.  In its dry state, this figure hides even more terrifying figures: from three to five people are infected every hour, and the disease slowly and painfully ends the life of two others every day.

The most common form of transmission is by air.  By coughing, sneezing, talking or even laughing, those who are infected and are not receiving treatment —and who can infect an average of 10 to 15 people per year— release minute droplets of saliva into the air, loaded with bacilli.  These can be inhaled —even in the smallest amounts— or dry up and become even smaller particles that remain suspended and can be transported on the air.  Or in an old and overcrowded combi. 

One study carried out in East Lima indicates that people who travel on public transport “are [up to] four times more at risk [of contracting the disease].” In other words, the longer the time seated (or standing) in a combi, the greater the risk of getting tuberculosis.

The MINSA and EsSalud hospitals are, also, breeding grounds for Koch’s bacillus.  But the lack of equipment and protection materials —such as masks— and the often obsolete infrastructure, as well as the overcrowding, are risk factors not only for patients who are hospitalized.  The tuberculosis can also turn a health worker into one more patient.

“Many of our hospitals were built on the American model: low ceilings and small windows. But this architectural design responded to a different reality than ours, to the need to conserve heat.  In Peru, the consequences are clear and devastating: less ventilation, less light, and more health workers infected with TB.  But not only simple TB —also MDR-TB,” Dr. Jave points out. 

Between 1997 and 2009, more than 220 doctors, nurses or technicians became infected with MDR-TB or XMDR-TB, an average of 18 per year.  MINSA reported 37 cases in 2007 alone.   But what is certainly also known is that many cases go unreported, because of the fear of ostracism or job loss.

“I was given a PPD test (a skin test for diagnosing TB) before I began working here. It was negative.  Now, as in the case of several of my colleagues, my test was positive. I have a latent TB infection, which means that the germ is in my body, although there are no evident symptoms yet,” says the nurse responsible for the TB program at a health center in a marginal-urban area of North Lima, and who asked us to withhold her name.

The illness within

María Gonzales, 25, has been hospitalized for the past month. But she began to cough up blood more than four months ago.

“I take 19 pills a day. Plus an injection, in the mornings. Some people get dizzy after the injection, they come out as if they were drunk. I feel very tired and often I don’t feel like doing anything,” she says.

In October last year, her chest X-rays showed several clear areas with different sized cavities, joined each one to the other.  There was no doubt: the TB was digging caves in her lungs.  

“I was immediately prescribed first-line antibiotics, which are used for curing simple TB.  But I didn’t want to take them just like that.  I didn’t know — nobody knew— if it was common tuberculosis or a resistant strain on which the medicines would have no effect,” says Maria.

The bacteriological analysis took three months.  And it confirmed the diagnosis of MDR-TB: a strain resistant to rifampicine and to isoniacide, two of the main antibiotics used in the treatment of TB.  And they were two of the antibiotics that Maria took, in vain, for several months, not only putting her own health at risk —since the bacteria could become more immune to the drugs— but also that of everyone who came into contact with her.   A person with uncontrolled TB can infect an estimated 10 to 20 people per year.

“I was really desperate.  For months I took pills that were not doing me any good, and my symptoms got worse.  I was sent from one place to another: that the doctor isn’t in, that he is on vacation, that my clinical record is not ready, that I had to get an appointment… It was hell.  ‘Don’t wait until I am well and truly dead before giving me the right treatment,’ I said to them.  The only thing the nurse said to me was that I should not get upset and that nothing would happen to me.”

It was not until January that the young woman was seen to at the Rebagliati Hospital.  She was told that, given the seriousness and advanced stage of her illness, she had to be hospitalized.  That same day. 

“The doctor did not let me speak, nor ask him anything.  He weighed me, he told me to sit more than two meters away from him, and he said goodbye with a quick motion of his hand: ‘Chau, chau’. I felt humilitated, mistreated,” Maria remembers.   

Political epidemic
If Maria contracted MDR-TB it was because the system failed.  Her illness is not only contagious— it is also social and political.

Between 1991 and 1995, the treatment administered in Peru was one, sole scheme (Esquema Uno), given to all TB patients.  Regardless of their clinical record, they all received equal doses of the same antibiotics during the six months of the uniform treatment.

Although it achieved a reduction in the rates of simple TB cases, the fact that all tuberculosis patients were treated indiscriminately —new, chronic, relapses, failures, abandoned cases, or MDR-TB— actually fostered the mutation of the bacillus or increased its resistance.  In fact, in 1991, the National TB Control Program (PNCT) reported that 60% of the patients who suffered a relapse or whose treatment was unsuccessful were cases of multidrug-resistant TB.

In 1996, at the recommendation of the World Health Organization, WHO, Esquema Dos was launched (later called the reinforced scheme two). This consisted of administering to patients who had not been cured under Scheme One, the exact same antibiotics. The only difference?  An antibiotic was added to the already useless cocktail of medicines: streptomycin.   The supposed solution was, in fact, nothing less than an undercover monotherapy…and a time bomb.

“MDR-TB must always be treated with at least three new antibiotics, never one alone.   To not do so is like throwing fuel onto a fire.  If to one already inadequate treatment you add another, it is certain that the resistance to the germ will shoot up,” Jave points out.

The rate of failure began to increase year after year until it was, according to official reports, between 50% and 70%. In 1997, the districts of Comas, Independencia and Carabayllo registered an 87% repeated failure rate and 4% deaths; i.e. 91% of the people submitted to the Scheme Two treatment in this area either reported failure or, worse yet, died.

Six years went by and more than 2,500 patients were treated before the PCNT, in 2001, prohibited the application of Scheme Two.  Without any explanation.

“There never was an official explanation, or any evaluation of the final results, given to the national medical community nor, of course, to the group of sick people, nor the rest of civil society.  Also, no explanations were given as to why the treatment was finally closed down,” says Jave, who believes there has been no epidemiological tragedy in the Americas with such devastating results.

The MDR-TB strains circulated freely for years, with obvious consequences.  Between 1995 and 2005, MDR-TB increased from less than 300 to more than 2,000 cases per year, and Peru is one of only three countries —in the world— that reported a statistically significant increase in the rate of MDR-TB between 1996 and 1999.

In 2004, thanks to support from the Global Fund to Fight AIDS, Tuberculosis and Malaria, Peru was able —for the first time— to buy sufficient quantities of antibiotics to treat patients with MDR-TB.  The treatment costs more than $2,500, plus expenses in tests, hospitalization, surgery, rehabilitation and food support. 

Too little, too late?

Today, the gravity of the MDR-TB epidemic is reflected in the cases turning up of children, which indicates active and recent transmission of the disease.  Also, the appearance in 1999 of the strain that is extremely multidrug resistant (XMDR-TB), which is almost incurable.

“The excuse always used to be the same: ‘There is no money.’ But now there is. Peru, after Brazil, is the second country with the biggest investment in TB. This year something more than $60 million will be available to fight this disease. What we are lacking is honesty. The money should be used for what it is said it is used, and not in bureaucratic games, such as hiring secretaries under the label of health personnel,” says Jave.

“I’m very concerned, for example, that MINSA has approved the purchase of antibiotics to treat 40 patients for XMDR-TB and that, having the money, the medicines have still not been bought,” adds Jave, who believes that poverty and the inadequate distribution of resources is making it difficult to combat TB.

A cure that sickens

Sometimes the pills leave Maria Gonzales feeling so weak that she can’t even walk.  She only has the strength to sleep.  “This illness isn’t a game. It’s synonymous with pain and suffering. And although it’s true that many are cured, others cannot stand the pills or the injections and give up,” says Maria. 

MDR-TB patients take their pills a few at a time, not all at once, so that they don’t throw them up.  The pills are very toxic, they can cause insufferable gastrointestinal discomforts, damage to the liver (hepatitis caused by drug interaction), discomforts in the nerve endings in the feet, hands and face, as well as depression, anemia and skin rashes.

In 2009, the failure rate of the treatment for simple TB was barely 1%. But one in five patients abandoned the treatment against MDR-TB.

“The MINSA authorities considered that health personnel should not be assigned exclusively to tuberculosis.  A grave mistake, because the deterioration in the quality of attention in the health services has a lot to do with abandonment.  If a patient is given explanations and is seen to properly, it is more than probable that they will stick to the treatment, even if this is painful,” says Jave.

“Many continue blaming the incurability of the germ on the patients. That is not fair, because the resistance is the product, largely, of the TB programs, which administered the wrong treatments for years,” he adds.

Maria is not to blame for anything, except perhaps for having lived in precarious and poor conditions.  And for becoming infected with a mutant strain of Koch’s bacillus, whose spread could have been prevented by the authorities.  Nowthere is nothing for her to do but wait.

*Annie Thériault was awarded third prize for this article by the Inter-American Institute for Human Rights. The article was first published as “Pulmones con cavernas” in the Revista Ideele magazine, and reproduced with permission. Thériault, a volunteer with CUSO International’s partner, the Lima-based Instituto de Defensa Legal (IDL), is a former Peruvian Times staff writer.  The prize was given in the III Regional Award for Journalism, Poverty and Human Rights in the Andean Region.

One Comment

  1. This is a magnificent and powerfully written article! I have long seen the specter of MDR and now XDR strains of TB far more terrifying than AIDS. It was in my grandmother’s generation that the United States still lived with the fear of being sent to a TB sanitarium, and like many childhood diseases that can be prevented through immunization, we have become complacent, refusing to recognize the threat of diseases. The fact that public health policies have been largely responsible for the mutation of TB in Lima is tragic. ALL US high school biology classes should read this article, and I have forwarded to our local school….

    ‘Thank You, Annie’

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