Living with TB Today
One third of the global population has been infected with tuberculosis. Though some will be able to fight off the infection themselves, many will develop cases of active tuberculosis. Roughly one person is infected with TB every second and one in ten people infected will develop active TB. There were 9.4 million new cases of TB in 2009. Unfortunately, an increasing proportion of these cases are untreatable as a result of increasing drug resistance.
In many communities a tuberculosis diagnosis is considered a death sentence, though it need not be. Some patients can be treated in their homes and continue to live a normal life while on TB medications, while others must be treated in hospital. There are times when persons have been incarcerated, simply for having been infected with drug resistant TB.
Side-Effects of tb drugs
Drugs are to be taken for between six months and two years. Patients will take as many as twenty tablets a day (and possibly more!) depending on the type of TB they have been diagnosed with, for up to six days a week. The side effects of these drugs are serious. Gastric problems, diarrhea, headache, loss of hearing, and liver or kidney dysfunction are but a few of the common problems that arise because of TB treatment.
“I get terrible headaches, dizziness and loss of appetite. It is better now, but there were times in the past when I just wanted to die, I felt so low and depressed. Maybe it was the drugs, or maybe the length of treatment, but it all just seemed too much.”
“It’s not easy taking all the drugs. I take two tablets for my TB every morning at 6 am and then for my HIV I take one in the morning and three at night. I get pains in my legs and headaches and sometimes I just don’t want to take the drugs, but I do my best.”
Quoted in Medecins Sans Frontieres, “Tuberculosis: New Faces of an Old Disease” (23 March 2009)
Drug Resistant TB
Because of these debilitating side effects and the length of treatment programs, some people choose to end their TB treatment early. This can lead to drug-resistant strains of the bacteria, strains that do not respond to most available treatments. Drug-resistant strains can develop within a person infected with TB, or be passed on to infect a new person. New treatments plans for multi-drug resistant (MDR-)TB are available, but they take several years to complete and cost much more than non-resistant TB treatment plans. Most persons worldwide with MDR-TB do not have access to treatment.
In 2008 an estimated 440,000 cases of MDR-TB existed worldwide. An estimated 3.3% of all newly diagnosed TB cases had MDR. 150,000 people died from MDR-TB in 2008.
In an attempt to maximize treatment success and limit treatment dropout and the development of MDR strains, the World Health Organization endorses the DOTS (Directly Observed Therapy Short-course) strategy. Under this program, patients take their medication while supervised, ensuring compliance with their treatment plan. In practice, though, daily supervision is difficult to enforce and the strategy is often modified to better fit the specific conditions of the location and patient. Clearly DOTS is not enough - new drugs and effective treatment programs are urgently needed.
HIV/AIDS & TB
A significant number of new TB cases are people with HIV, whose weakened immune system cannot contain TB. The correlation between HIV and tuberculosis is staggering; being infected with either disease makes you more susceptible to the other. In developing countries, TB is the leading cause of death among people who are infected with HIV; up to 50% of deaths of HIV patients are due to TB. In more industrialized countries, about 10% of HIV patients also have TB.
Multiple drugs are required to treat both TB and HIV. Some cause negative interactions and some drugs used to treat one disease diminish the efficacy of those taken to treat the other. An integrated treatment plan is necessary for a cure of TB and control of HIV.
The social consequences of TB
There is a great social stigma attached to TB. Afraid to contract the disease, many people avoid those with TB, isolating them within the community. This is particularly true of people with MDR-TB. Additionally, many TB patients must travel outside of their home communities to obtain treatment. Beyond the loneliness of this separation from family, the financial strain of travelling to clinics is often difficult to bear when a wage-earner is too ill to work.
Some countries (or states and provinces) approve the detention and isolation of people with active TB in an effort to limit the spread of disease. Infectious patients who do not comply with treatment plans or, in some cases, who are perceived to be a future threat of non-compliance may be detained in the custody of health officials. Those in favour of this policy argue that it enforces the patients’ social responsibility when they prove unwilling to do so voluntarily, while those opposed to it argue that detention violates patients’ human rights.
The cost of living with TB goes beyond physical discomfort and pain. Many patients suffer the mental pain of isolation, the guilt of not providing for their families, and the stress of poverty. Improved medical treatments that tackle the problems of HIV and drug-resistant TB are needed, as are social programs that respond to the social and pyschological consequences associated with the disease.
To read first hand accounts from people living with TB, click the following link to navigate to the Medecins Sans Frontieres blog-site “TB&Me.”
Lives in the balance: the urgent need for HIV and TB treatment in Myanmar (MSF Australia)
TB patients in Myanmar discuss the lack of awareness about the severity of TB compared to HIV awareness, the side effects of TB medication, and the difficulties of undergoing treatment, including the cost of travelling to clinics and leaving your family behind.
Share my solitude: living with drug-resistant TB in Swazi (MSF Australia)
Happiness Dlamini, a 31-year-old woman diagnosed with MDR-TB in Swaziland shares her story, including the side-effects of her drug regimen, the isolation she feels within her community, and the way her relationship with her daughter has changed since her diagnosis.
Drug Resistant TB: A slow and painful process (MSF Australia)
Photographer Misha Friedman introduces us to some of the TB patients in Nukus, Uzbekistan, including a man who recently found out he was not responding to treatment and a boy concerned about the social stigma of being a TB patient.
I’m not sick, but I’m sick, sick Fully Sick Rapper (Christiaan van Vuuren)
Enter the hospital room of Christiann van Vuuren, an Australian who contracted TB while vacationing in South America. Quarantined for months to ensure he would not spread the disease to others, van Vuuren began to create rap videos documenting his life, thoughts, and boredom whilst in quarantine. This video tells Van Vuuren’s story of getting sick, being diagnosed, and entering the hospital.
For other stories about people affected by TB, we recommend the following videos:
