Sofia – Colombia

The name of the child in this story has been changed to protect confidentiality.

Sofia was 14 years old and focused on her studies when she first started to experience symptoms of illness. In April 2006, a month after she began to feel sick, she was diagnosed with TB. Sofia was treated with streptomycin, isoniazid, rifampicin, and pyrazinamide for six months, but the bacteria persisted. In January 2007, Sofia was prescribed the standard re-treatment regimen in Colombia given to patients who do not successfully cultureconvert after their first six months of treatment. This regimen consists of a mix of first- and second-line drugs: three months of streptomycin, ethambutol, pyrazinamide, rifampicin, and ethionamide, and nine months of ethionamide, ethambutol, isoniazid, rifampicin, and ciprofloxacin. On her new treatment regimen, Sofia began to show signs of clinical improvement, but the bacteria still persisted. During her 18 months of treatment, Sofia struggled to produce sputum samples. Some did not have enough bacteria, while those that did became contaminated, but in October 2007, Sofia was able to successfully produce a culture for DST.

While Sofia and her doctor awaited the DST, they learned that Sofia’s father had confirmed MDR-TB in 2003—a strain that was resistant to all first-line drugs. They also learned that he was treated with the available second-line drugs, but did not take his medications regularly and eventually abandoned treatment altogether.

In January 2008, the test results showed that Sofia had MDR-TB and that her strain was resistant to rifampicin and isoniazid, the two most powerful first-line drugs. Sofia went to see a specialist and describes her disheartening experience: “I lived discrimination. A specialist told me that I was going to die, so why would he see me? Saying that I was resistant made all the medical personnel make me feel bad, even though I was using a mask. My family helped me a lot; for them I was not infectious.”

In February 2008, Sofia began her treatment for DR-TB, which consisted of 24 months of daily moxifloxacin, linezolid, amikacin, cycloserine, PAS, ethambutol, ethionamide, and amoxicillin. For the first three months of treatment, Sofia was hospitalized for malnutrition, coughing up blood, and adverse effects of the second-line drugs. Her chest X-rays showed extensive lung cavitations (holes where the TB had destroyed lung tissue). Hospitalization and illness forced Sofia to put her studies on hold for 15 months. Sofia disliked the taste of the second-line drugs. She had difficulty swallowing the large pills, and the sheer number of pills she had to take each day amplified amplified this difficulty. Sofia experienced constant nausea and a loss of appetite. The second-line drugs Sofia needed were not always available; this resulted in treatment interruptions, which are dangerous and can exacerbate drug resistance.

Sofia had medical insurance and received what she described as decent care, but she saw the difficulties other patients without insurance faced in obtaining diagnosis and access to the medications they needed. Even though medical personnel stigmatized Sofia, the support of her family and other patients she had met who were being treated for DRTB made her feel less alone.

In March 2010, Sofia was cured of TB, but not without cost. The second-line drugs she was treated with caused bilateral hearing loss: 50% of her left-side hearing and 80% of her right-side hearing. Sofia has hearing aids, but they are not enough, and she is unable to continue her education or find work. “Though they don’t consider me disabled, they don’t give me work because I can’t hear.” Sofia’s hearing loss serves as a daily reminder of her fight with TB, as Sophia said, “pero logramos curarnos” (but we can heal).

Story Collected by: Sandra Ariza Matiz, Enfermera Epidemióloga, Instituto Departamental de Salud, Norte de Santander, Programa de Tuberculosis, Colombia; Santiago Fadul Pérez, Medico Epidemiólogo, Instituto Nacional de Salud (INS), Punto Focal TBFR, Colombia; Cesar Moreira, Medico Magister en Salud Pública (MSP), Colombia; Karime Negrón, Enfermera de Promoción y Prevención, SaludCoop Empresa Promotora de Salud (EPS), Colombia; Román Reyes, Médico Familiar, SaludCoop Empresa Promotora de Salud (EPS), Colombia