The rocky road to destigmatising tuberculosis

The highest burden of the disease is shared between the western Pacific and southeast Asia regions, which have 56% of all tuberculosis cases, and the WHO African region, which has 25% of all cases. With 1·5 million tuberculosis-related deaths occurring worldwide each year, tuberculosis is the world's second most deadly infectious disease, after HIV.

Although the standard treatment for drug-sensitive tuberculosis—the most common form of tuberculosis—is highly effective, it is also lengthy and in many cases difficult for patients to follow, let alone for clinicians to implement in many patient populations. How patients feel and how they are treated by medical practitioners or the general community is an important, yet often overlooked, aspect of tuberculosis treatment. The language used by doctors and other medical personnel when referring to patients with tuberculosis, such as tuberculosis suspect or treatment defaulter evoke perceptions of infringement, law breaking, and punishment, which carry an inherent stigmatising tone that can deeply affect many patients.

These terms are highly reminiscent of the way we talk about discipline and punishment, says Mike Frick from the TB/HIV Project Treatment Action Group, and it is particularly problematic, “especially when confronting a disease that mainly affects those who are socially marginalised”. Referring to a patient with tuberculosis as a tuberculosis suspect treats patients as if they had committed a crime, and, he adds, “risks reinforcing regressive legal penalties against people with tuberculosis in places where tuberculosis transmission may be criminalised, or where evidence of prior tuberculosis disease could be grounds for deportation or jeopardise one's ability to work. It has also encouraged medical practitioners to approach a person with tuberculosis as a case to be investigated rather than as an individual in need of care and cure.”

Likewise, to say that a patient is a treatment defaulter because they have not adhered to a treatment plan uses terminology normally used for people who have failed to pay a loan. Frick adds, “Health is a human right that governments are obligated to provide for, so tuberculosis treatment shouldn't be framed as something given out on loan. By assigning all blame to the person with tuberculosis, the term ‘defaulter’ clouds bigger factors that contribute to poor treatment outcomes—inadequate drug regimens, drug stock outs, broken health systems, and slow progress in research and development.”

It has now become clear that the use of such language has detrimental effects, because it might cause patients to hide their condition, discontinue treatment, and avoid sources of help. And the problem extends well beyond language.

A diagnosis of tuberculosis has historically carried a socially expensive tag, usually leading to social isolation, and even legal trouble for some people. “My main concern is that in some cultures (surprisingly, still in rich countries) tuberculosis is perceived as something not to show”, says Giovanni Battista Migliori, Director of the WHO Collaborating Centre for TB and Lung Diseases, Tradate, Italy. This perception leads people to avoid reporting their condition to medical practitioners, which can cause serious consequences to the individual and the community, because of the transmittable nature of the disease. He adds that this perception is much more difficult to correct than changing wording in documents.

In many parts of the world, people who are diagnosed with tuberculosis or have tuberculosis-related symptoms could lose their jobs, face legal problems, and even face eviction from their homes, if the disease is confirmed and becomes known in their community. This is particularly problematic in countries with high rates of tuberculosis and HIV co-infection, where people are afraid to admit that they have tuberculosis for fear that they might be seen as also having HIV.

Another side of the story that is rarely discussed involves how patients and tuberculosis activists see doctors and other medical professionals. Migliori said, “Fighting against stigma to respect tuberculosis patients does not mean to lose respect for health-care professionals, who are often underpaid and risking their health to help patients.” Migliori also commented on how health-care professionals have been accused of being part of the problem and not the solution, which is worrying when doctors, nurses, and patients are all on the same side trying to fight tuberculosis.

According to Migliori, the road to eliminate stigma is not simple because it involves much more than just patients. He noted that, “In order to reduce stigma on top of law changes, it is necessary to work on the area of advocacy and education; education of health-care professionals, patients, and general community.” The media can do a lot in conveying correct messages to the general population, and because tuberculosis is a transmissible disease, free access to health services for adequate diagnosis and treatment is, Migliori adds, “on top of being an individual human right—in the best interest of the community”.

Source: The Lancet Respiratory Medicine