By Blessina Kumar – CEO Global Coalition of TB Activists (GCTA)
One of the most commendable things about the response to the novel Coronavirus 2019 (COVID-19) pandemic currently underway, is how well key information has been shared worldwide. Despite misinformation from multiple quarters, the sharing of messaging has been sensitive, informative and highly effective in helping communities protect themselves. Having spent years working on tuberculosis (TB) and ways to mitigate the spread of the disease, I truly appreciate the effort put into making information accessible to all. In the drive to TB elimination, messaging today remains overly medicalized and can sometimes cause stigma around the disease, rather than mitigate it.
On Twitter and on television, messaging on COVID-19 has stressed the importance of community action – and how keeping yourself safe is at par with ensuring that fellow citizens are protected. The dialogue has been humanizing, with most calling for COVID-19 patients to be seen as people, not numbers or cases.
This is a tremendously important lesson for all of us working in TB. Just recently, I spent time speaking on the phone with a young woman who has been diagnosed with TB-meningitis. The diagnosis can be terrifying, especially when it comes to making a decision about treatment. Most often, our toll-free number doesn’t work and the fortunate few who are able to seek competent counsel are vastly outnumbered by those who cannot.
This lack of information can be devastating, as we have seen during the ongoing COVID outbreak. If we look at the amount of investment that has gone into responding to the crisis, and the speed with which it happened, it makes us think it is possible when there is a real will to do it.
In India, despite high-level commitment, we are still struggling to achieve TB elimination ahead of the Sustainable Development Goals (SDG) target. When in 2017, the Prime Minister announced that we would end TB in 2025 – five years ahead of the SDGs – it did give us the impetus to channel a great deal of energy into the TB programme.
But something is still missing.
Years ago, when the AIDS epidemic began, we witnessed extremely quick and effective messaging that began when affected community members made a stand. With the availability of antiretroviral (ARV) drugs, large sections of the community were sensitized, especially those who were vulnerable. The groundwork was effectively laid to empower people with right information to understand the disease and the drugs. For e.g. to explain the HIV virus and how it affects the immune system, the human immune system was cleverly compared to the army – a message that resonated with everyone. Similarly, with COVID the messages are simple and broken down into easy-to-comprehend bite-sized packages, aimed at communicating the central messaging effectively – the importance of physical distancing and taking steps to mitigate the risk of spreading the disease.
Today, we know COVID-19 can seriously affect those with active TB infection, or anyone with existing lung conditions and co-morbidities such as diabetes and hypertension. We need to mitigate the fear-psychosis around both TB and COVID-19 to ensure that we can effectively protect against them. We need systems that are people centric and public messaging needs to be innovative, inclusive and sensitive to inspire people to seek treatment quickly, with minimal risk to themselves and others.
#EndStigmaEndTB
Organizations such as India Health Fund (IHF) are trying to change the way in which we address TB. The more we think of disease elimination from an innovative perspective, whether it is in communications or diagnostics or treatment, the better our chance of ending TB in India by 2025.
Blessina Kumar is a health activist with a background in Community Health and Health Systems Management and is the co-founder of the Global Coalition of TB Activists (GCTA). She has extensive experience of working with varied marginalised communities in India and the internally displaced populations in the Sudan.