Oxana’s story reminds us how important it is not to forget that the stigma surrounding TB continues to be one of the greatest obstacles in defeating the disease. Oxana was treated for TB for three years – first for standard TB and then for two years for multidrug-resistant TB (MDR-TB).
Along with other TB patients, Oxana has founded the Moldova Society Against Tuberculosis (SMIT) which advocates for partnership and cooperation between TB patients, medical staff and authorities. It also develops activities to benefit people affected by TB and engage on issues of how TB is approached in Moldova.
Here we have spoken with Oxana to hear of her personal experience of being diagnosed with multi-drug resistant TB:
Before being diagnosed, Oxana was leading what most of us what refer to as a normal life. Between working and socialising, Oxana began to suspect something was wrong when she began to lose weight and was persistently bothered by a pain in her chest. Unfortunately for Oxana it was confirmed she has TB – a diagnosis she described as being “one of the most painful things”.
Stigma remains a substantial issue for TB patients. In a story that is all too commonly heard, the “shame” that Oxana felt meant that it took her months to accept her diagnosis and to move forward. In Moldova, as is the case in many social settings, Oxana explains that the stigma associated with TB makes it incredibly difficult for former patients be associated with and to advocate on once they are cured. It is considered an illness of “the homeless, alcoholics, drug users and former prisoners”. As a result, “There are very few former patients who would like to stay involved in TB advocacy.” Instead they choose to get on with their lives and to “forget about this nightmare”.
To exacerbate the social stigma, more and more people are being diagnosed with MDR-TB. MDR-TB emerges as a result of improper treatment, something all too common given that many national governments either lack the resources or the political will to tackle TB appropriately.
Oxana explained that it is virtually impossible to comprehend how bad the physical side effects of taking MDR-TB drugs are. Indeed, when Oxana was asked about her experience with MDR-TB drugs she stated that: “The only thing I would like to say is that I would never wish that experience on my greatest enemy!”
Side effects include vomiting, diarrhoea dizziness, anxiety, depression and suicidal ideation — to name just a few.
Drug-resistance is an alarming problem. Not only are the drugs incredibly toxic for patients, but treatment can cost a hundred times the amount compared to treatment for standard TB. Failure to address both TB and the rising rates of drug-resistant TB now will mean that we can expect to face a future of unparalleled costs in tackling TB. This will be in addition to the hundreds of thousand of people who will suffer from stigma, debilitating side effects and the loss of many more lives.
Oxana would like to urge the world not to forget that: TB is more than just a medical issue. It is also social and economic, and we must ensure that in order to consolidate the results of successful treatment there must be ongoing support to guarantee ex-patients a decent, social and secure life.