The wings of TB community advocacy were clipped from the very outset. Language ensured that it wouldn’t fly too far away from the public health model that has dominated TB control for so long.
The major advances of HIV community advocacy are well documented. From the very start of the pandemic those directly affected by HIV who spoke out, made their demands, who were visible and marched, and carried out direct action were termed as “activists”. There are few in the public health sphere who would deny the impact such activism has had on access to HIV treatment and care globally today. There are also those who at the time saw such activists as being trouble-makers.
When efforts to do something about TB, and drug-resistance started to gain momentum in the early 2000s it had already been learnt by some that to succeed there needed to be similar activism as there had been for HIV, for TB. Whilst this was partially recognised and the doors were open to the TB affected community, in my opinion the idea of that kind of HIV activism having a place in the established public health model for TB control was too unpalatable for some. So instead of “activists” we were invited in as “advocates”. The very nature of the word is much more passive than that of “activist”. The use of the word “advocate” has disempowered the TB affected community from the very start. It has metaphorically castrated the movement and I believe we are paying the cost for that now.
There are those who are more progressive in public health and the TB arena that know to push the long established boundaries of TB advocacy a more direct kind activism is required. Indeed they are actively encouraging it, often covertly and off the record. They need the affected community to say the things that they cannot within their own organizations. TB advocates need to be on a sliding scale everything from a full-blown activist to a diplomat on the other side of the scale, and everything else in between depending on the situation. We need to see the current state of affairs as an opportunity for genuine and direct TB activism that up until now we have only seen glimpses of.