Good Morning Hank, it’s Tuesday. So five years ago when I was 40
I feel like I was a fairly well informed person back then but I did not know that the
world’s deadliest infectious disease was tuberculosis.
In fact on some level, the reason I’m so obsessed with tuberculosis,
like to the extent that I’m on vacation and yet still reading a book about
Sir Arthur Conan Doyle and his contributions to tuberculosis research is because
I didn’t know that tuberculosis was the world’s deadliest infectious disease.
Like, what was so wrong with my ingestion of information that I believed that tuberculosis
was like a 19th century problem.
And I’ve seen this a lot, at parties and conversations with friends
and every other time that I’m in a social situation
and I bring up tuberculosis which is every time I’m in a social situation.
People will be like, really?
I kind of thought that was a problem of the past. Anyway I was talking to a public health official
recently like a fancy person in the world of global health and they said
the problem tuberculosis has is it doesn’t have a constituency.
Like, illnesses that have what he called
a global constituency tend to get much more attention and the problems
we pay attention to tend to be the problems that we solve.
Like, look at the other three great infectious diseases of the 21st century.
So far. The 21st century so far. Let’s not jinx ourselves.
We’ve got Covid-19 which had a global constituency from day 1.
Powerful people and powerful countries recognized that their lives were going to be
upended by Covid and so there was an immediate, immediate expenditure of resources to be like,
we’ve gotta figure this out.
Then you’ve got HIV,
which primarily affected marginalized people which made it harder to build that global
coalition. Right?
Like in the 1980’s organizations like ACT Up emerged and through direct action
and tons of tons of activism were eventually able to get the attention of governments but like,
I think that it was four or five years after HIV first emerged in the United States,
Ronald Regan, the president of the United States, first mentioned it.
And then even after all of the work
to discover and disseminate new effective treatments,
those treatments weren’t available to people in impoverished communities.
HIV activists in the United States and Europe and also in the Global South
came together and worked together to build that constituency as a result
HIV deaths over the last 20 years have dropped by more than 50%.
And then lastly you have Malaria. Now, organizations worked incredibly hard
to get Malaria into the center of health conversations.
Especially in the early 2000’s which is when the Malaria death rate
finally started to drop.
Anyway, when we really talk about when we talk about a disease
having a constituency is a disease having a constituency that includes
people from rich and powerful communities,
people who have access to the megaphones of the social internet,
and so on right?
Because Tuberculosis has a constituency. Over 10 million people get sick every year.
There are so many activists working so incredibly hard to bring attention
to this crisis and yet,
I still didn’t know anything about it because I wasn’t listening to those voices.
I really didn’t eve know how to listen to them. So 5 years ago when for instance,
the young women who would sue the Indian government to make sure
generic bedaquiline could be available for production were engaging in activism,
I didn’t know about that activism.
And so I would argue is that actually
what TB needed was for people in the rich world to pay attention.
And I feel that that is beginning to happen not primarily because of me,
although I will not shut up about this.
Believe me. But because people are beginning
to understand that the world’s deadliest infectious disease in 2023 is curable.
And the cure isn’t just medicine it’s also being able to find cases and diagnose
them quickly and effectively so we know not just whether they
have TB but whether the TB they have
is resistant to certain antibiotics and it’s about preventing TB illness
once we’ve identified those cases by giving their close contacts,
people who live inside their household one month of preventative treatment
so they don’t get sick with TB. And it’s about making sure every person
who lives with Tuberculosis can access curative treatment.
And so I think there’s a lot of reasons why
people like me weren’t paying attention to tuberculosis.
It kills slowly instead of dramatically. It’s more of a problem in low
and middle-income countries rather than rich ones.
And most of all, it’s a disease ultimately
caused by crowded living conditions, by malnutrition and by other symptoms
of what is really the world’s leading cause of death, poverty.
All of that has meant that for too long fighting tuberculosis has not
had the global constituency that it needs, but I hope that’s starting to change.
Like, when I was a teenager, right at the beginning of the internet
there was this irl viral meme, Andre the Giant has a Posse.
You’d see these stickers everywhere and everywhere I saw them would
bring me immense joy.
I love the idea that Andre the Giant had a posse.
That like there’s a group of people who were with Andre the Giant.
That he would no longer be cast out and marginalized for his size because
Andre the Giant has a posse now. And that’s what I want for people
living with tuberculosis and the activists fighting it
if for tuberculosis fighters to have a posse.
For the world, especially the rich world to say, you are no longer alone.
We will stand with you and we will fight for you.
I genuinely believe this community helped lead a big step in this direction last week
and I am overwhelmed with gratitude.
But it’s a step and we need to make more of them.
Hank, I’ll see you on Friday