Drug-Resistant Tuberculosis (DR-TB) is a form of TB where the bacteria and thus the patient does not respond to the first line of medication. DR-TB is one of the leading preventable causes of untold misery, great suffering, and back-breaking poverty & economic loss to those who are already living below poverty line. It is a human-made disease resulting from incomplete treatment or missed doses.
There are 2 types of TB:
- DS-TB or Drug Sensitive-TB
- DR-TB or Drug Resistance-TB
There are 3 types of DR-TB:
- MDR – Multi-Drug-Resistant TB: resistant to at least isoniazid and rifampicin
- XDR – Extensively-Drug-Resistant TB: further resistant to fluoroquinolone (injectable)
- XXDR (Also sometimes referred to as TDR) – Extremely or Totally Drug Resistant: resistant to more than one injectible
Treatment of DR-TB
For MDR-TB, the treatment is second-line drugs, but detection rates are very low because of a lack of testing–only 19% of those who develop drug-resistant TB get proper treatment. Treatment itself is a daunting task: drugs are toxic, side effects are more serious, and the treatment lasts for two years, including six months of daily injections. Only 50% of patients getting proper treatment are cured, and the psychological impact of the disease combined with the social stigma against it leads to a horrifying scenario. The situation is worse for patients of XDR, who are forced to buy expensive medicines, some of which are not even easily available.
How does drug resistance develop?
- MDR-TB is a man-made phenomenon – poor treatment, poor drugs and poor adherence to therapy for DS-TB leads to the development of MDR-TB.
- When a patient is not given the correct dosage of drugs for the prescribed treatment period, the bacteria has the opportunity to evolve and mutate against the drugs, rendering them ineffective.
- MDR is treated by second-line drugs. Incomplete and erratic treatment for MDR leads to stronger resistance and XDR-TB. Incomplete treatment of XDR leads to XXDR, for which there is no treatment at all. These are people who are doomed to die a lingering, painful death.
All patients of DR-TB breathe out bacteria that are drug resistant. This is how DR-TB is spreading like wildfire. According to Lee Reichman in his book the “Time Bomb”, the world is on the brink of an epidemic of MDR-TB.
Why MDR-TB Patients Need Extra Counseling:
- Added sense of hopelessness in belief that MDR-TB is not curable
- Suicidal tendencies and/or depression relating to hopelessness, stigma, discrimination
- Guilt/shame about being sick all the time
- Support regarding management of side effects
Extra Challenges for MDR-TB:
- Patients are reluctant to take the medication, especially painful injections because of the side effects. Constant and repeated persuasion is required.
- NO doses can be missed.
- It is difficult to ensure that families give tender loving care to DR-TB patients. There is an all-pervading fear of contracting the disease.
- There seems to be no extra funding for treating DR-TB, though the NGO costs go up substantially.
- ALL patients of Drug-Resistant TB need some financial support, psychological assessment, and nutrition supplements.
DR-TB is a frightening disease. It leads to horrifying human rights violations, disruptions of families, and terrible economic loss to individuals, families, communities, and countries. The amount of suffering these patients endure is unimaginable. If we do not treat MDR-TB properly, XDR or XXDR-TB will develop in the ongoing evolutionary arms race between drug developers and the bacteria.
Rahima’s story is one not of sadness, but of strength. Rahima, a 44-year-old woman from Uttar Pradesh (UP), is Operation ASHA’s only cured XXDR-TB patient. Rahima came with her son, Abbu, from a small town in UP to Operation ASHA’s office in New Delhi. She had come to our office after visiting Mumbai for her yearly check-up. Although she was recently declared cured of TB, she will live with the effects that the disease left behind forever.
Rahima has been a victim of TB for many years, having initially developed TB in 2006. Her first diagnosis came after constantly coughing up phlegm, one of the many indicators of TB. When she first started treatment for TB in her small village, she was forced to miss doses because the DOTS center where she received medicine was very far from her house. As a result, she couldn’t take her medications consistently, and the bacteria in her lungs that caused her TB became resistant to the drugs, leading to MDR-TB, or Multidrug-Resistant TB. Further failed treatment led to the development of the most dangerous type of TB, XXDR-TB, or Extremely-Drug-Resistant TB. Once XXDR-TB develops in the patient, the disease is much harder and more costly to treat.
After she had developed such advanced TB, Rahima’s husband abandoned her, claiming she was of no use because she couldn’t work and make money to maintain the household, although they had been married since she was 17 years old. Now, Rahima alone has to care for her two sons. Her oldest son recently completed an apprenticeship, and while waiting for the results has been maintaining a low-paying job that can just barely sustain the family. Her younger son, Abbu, is studying in university hoping to find a well-paying job after finishing his education.
Since her two sons are away trying to support the family, Rahima lives alone. She still gets extremely sick once or twice a month because of the damage in her lungs left behind by her long struggle with TB. She has also developed COPD (Chronic Obstructive Pulmonary Disorder) from the residual damage of TB to her lungs, which she will endure for the rest of her life. Furthermore, the combined impact of her severe anemia and compromised lungs is extremely dangerous, as she experiences enhanced and chronic fatigue. She tell us, “sometimes, I don’t even have the energy to get myself a glass of water at night.”
Until 2015, Rahima was subjected to endless suffering due to her TB. For the 9 year duration between beginning treatment and being cured, Rahima’s health deteriorated to the point that she could not recognize anyone, could not eat, and was barely living. She was the first and only one in her family to suffer from TB, and came face-to-face with the stigma attached to TB everyday. She laments that many people in her village kept their distance from her while she was ill. However, although her current situation brings tears to her eyes, Rahima currently remains positive when reflecting back on her past, claiming that others “gave her much love” after she contracted the disease. Rahima became associated with Operation ASHA only in 2012, when her husband met some of Operation ASHA’s providers.
Today, Rahima has little to no money to get by day-to-day, and her yearly check ups in Mumbai are still very expensive. She endures a variety of health problems, ranging from UTIs, stomach pain, to excessive coughing and overall weakness. These problems often prevent her from obtaining a full night’s sleep, and she has no one at home to help her in the case of an emergency. To sustain herself, she says she grows enough rice for herself, but still needs pulses, wheat flour, etc. She must avoid contracting viral fevers, upper respiratory infections, or any illness that will prey on her weak lungs. Even with the help of government subsidies and Operation ASHA, there are currently not enough resources available to cover her yearly check-ups, as well as the transportation, food, and lodging required for these check-ups. The effects of TB can be long-lasting and pervasive.