Leveraging epidemics for social change

I have always appreciated the fact that the HIV crisis, especially targeting the gay community in the early stages led the communities to make a serious push to lead the epidemic and set ground rules. The Denver principles put out in 1983 set the stage for ground breaking social changes. As the principles were rolled over the next two decades, the gay, sex worker and transgender community saw changes that could have not been imagined before. From same sex marriages to binary gender becoming non binary. Sex workers began to have a seat at the table and run organisations for the benefit of the community. Health for the marginalised became accessible and part of the government program.

Interestingly, it was the gay community that took the lead on this. They fought the battle, raised funds and changed the paradigm of conservative elitism for inclusion at the table. This meant that they could be openly gay and not be discriminated.

While the same cannot be said of sex workers, transgenders are slowly able to walk towards the elite table. Education, sports, employment among others have opened up for them.

Sex workers on the other hand are still a deprived lot. Many of them have not joined the occupation on their own but have been driven to it due to poverty, abuse or been trafficked. This has left them in the hands of criminal elements that, in most cases, have broken their spirit and in a Stockholm syndrome case, support the criminals. In some incidences the sex workers have broken out of this and set up their own organisations but they still have every little access to that elite table.

However, in the HIV world, all the three communities have a seat at the table. They are Involved and active and at times set the agenda for treatment and care.

In short, the HIV affected communities has been able to leverage the epidemic to change the social construct for them to be acceptable within they larger society.

If we use the same lens to look at TB, the community that needs to have a seat at the table and leverage the epidemic to change the construct are the ‘poor’. TB is a poor person’s disease. This is why for over a hundred years and continuing, the testing for TB depended on a microscope and bringing up sputum in a cup. This method of testing discriminates among those who cannot bring up sputum, have TB in other parts of the body (sputum works for TB in the lungs) and newer tests that have appeared lately have come on the HIV bandwagon (TB kills more people living with AIDS than HIV), not because of TB. Covid, a pandemic, saw vaccines being brought in about a year of its appearance. TB is over 150 years old, no effective vaccine yet. The medicines for TB treatment have serious side effects, painful injections that go on for months, mental health issues, complete lack of confidentiality with the person being given the medicine by a provider at their own sweet time, all reflecting the fact that TB is a poor person’s disease — a poor person who can be treated shabbily and they will not complain.

In the early 80’s, I remember that Government TB dispensaries would generally have only one of the two combination drugs that the patients were meant to have. And the poor were meant to be grateful that something is available.

What I would like to highlight is that TB is a poor person’s disease and it can be effectively eliminated when poverty becomes history. Smallpox and polio has been effectively eliminated and the variable is that it affected all people irrespective of their social standing. HIV, though it could affect everyone, was largely focused on marginalised groups and the reason for comparing TB with the HIV epidemic.

Looking at history and learning from it involves us looking at HIV and put the learnings to use in TB. Eliminating poverty does not take much money but requires a huge amount of political and elite will. Wealth is made by paying the poor less wages, reducing their entitlements, and taxing them for everything they need to live. And this is a global phenomena.

Just my initial thoughts. Let us engage and tease out the inequalities a bit more and see what we can do to move the counter an extra square.