In 1953, Richard Starkey contracted a disease that put him in a sanatorium for two years. During his second year there, he was diagnosed with Tuberculosis. Richard was lucky to have had access to health care services, to be in an environment where he not only received medical care, but other type of support. As part of the services offered at the sanatorium, music classes were given, and Richard chose to learn to play the drums.
About a decade later, we got to meet Richard as part of a very famous band and began knowing him by his artistic name ‘Ringo Starr’, member of The Beatles.
Other famous individuals affected by TB include Albert Camus, George Orwell, Nelson Mandela, Desmond Tutu and others who were successfully treated and cured from the disease. The point is that TB can affect everybody, and we are all potentially at risk of contracting the infection and eventually developing the disease.
Tuberculosis is an infectious disease that is transmitted mainly by air, from one person with TB to a healthy one, when the person with TB coughs or sneezes. The bacteria that causes TB affects mainly the lungs, and when entering a person, it can remain inside that person in ‘infection’ stage without causing disease, or it can become active TB. Only 10-15% of those people with the infection will develop the disease. But someone with active TB can infect up to 15 new individuals per year.
According to the World Health Organization’s Global Tuberculosis Report 2013 in 2012, a total of 8.6 million people developed the disease, and 1.3 million died from complications of Tuberculosis (including 320,000 who were also HIV positive). Very importantly, close to 3 million people with TB every year, are not diagnosed or do not receive necessary access to health services.
Now, imagine yourself receiving a diagnosis Tuberculosis. What do you know about the disease now? How do you think you contracted it? What are the potential risks you now posed to your loved ones, as it is transmissible? Will people treat you differently? And if so, how? Would you find the support you need to endure six months of continued, daily treatment? Who do you talk to about it?
Alejandro, a 19 year old young man from Mexico took the picture above and used it to develop a poster that he entitled “Loneliness in TB” and described that “TB made me feel like this house, abandoned and falling apart. If it wasn’t for the friends who supported me and stayed with me when I was sick, I would have continued to deteriorate”. A Voices and Images strategy using the Photovoice methodology was used by PCI in Mexico to raise awareness amongst health providers about the type of mental health issues and needs of people with TB, and the need for person-centered approaches to health service provision.
One of the most crucial keys to successful TB treatment is continuity of treatment (treatment adherence), regular medical visits and tests. And as a standard of care, individuals with TB must adhere to ‘Directly Observed Therapy’ meaning you cannot be trusted to take your medication, someone should witness your medication intake. It is not the standard everywhere in the world, but it’s certainly the standard of care in the developing world.
This ‘dis-empowering’ reality is amplified by the fact that there are many myths and misconceptions that exist about how TB is contracted, transmitted and cured. Issues of guilt, blame, shame, also play a role in these processes. These result in stigmatization and discrimination directed to the person affected by Tuberculosis or even in some case, self-stigmatization. As a result, some individuals may opt not to seek testing and diagnosis services in the first place, because they just don’t want to know they have this ‘type’ of disease. Some might start treatment, but stop it after feeling better about their symptoms, or after receiving less than appropriate services from their health providers. Others are so afraid that community members, peers or even family members know about their disease, that they do everything they can to keep it a secret.
PCI’s work has included extensive work to learn and better understand issues of stigma, discrimination, and the knowledge, attitudes and behaviors that relate to TB detection and control. This learning has been translated into improved quality of care, better outcomes and strengthened health systems that have adopted a person-centered approach to TB services.
Quality, respectful health care services are a right that should be afforded to every individual who needs it. Receiving support from friends, family members, and health care providers could, in many cases, be the difference between life and death. Let’s learn more about TB, about how it’s transmitted and prevented, and very importantly, let’s do more to be a supportive resource to those affected. This will help decrease the number of people who die from TB (1.3 million of TB deaths in 2012) around the world. It might also help increase the number of individuals who seek testing, early detection and treatment adherence. This will also contribute to improving treatment outcomes (cure rates) for Tuberculosis. Very importantly, it will help restore some of the dignity and empowerment that is taken away from individuals after being diagnosed with the disease.