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A Major Step in the Fight Against Tuberculosis
12 min read
Hello,
I am cross posting this here to the EA community as I believe there may be interest from those who are EA aligned. I'm going to let this article speak for itself but will add a bit of EA style argument. It will probably make sense if you skip the next paragraph and read the article first.
I tend to think protest is probably undervalued by EA. The effectiveness of this sort of protest that just happened is inherently pretty difficult to measure. But it seems reasonable to think that a better deal was reached because of internet activism on bedaquiline that may have saved, let's say conservatively, a hundred thousand lives. The input for that included time and attention from a lot of people who might have otherwise spent that time doing other stuff, most of it probably not anywhere near as impactful. Suppose roughly a fifth of the 500k views of John Green's original video were serious activists that spent 4 hours of their time learning or otherwise investing time in activism. Suppose they make on average $20/hr. Then the opportunity cost to the activism was around 8 million. I kind of have huge problems with this whole line of argument, but that means the cost for activists to save one life was around $80. That is kind of ridiculous.
We’re dancing on the ruins of multinational corporations
Dancing on the ruins of multinational corporation
Dancing on the ruins of multinational corporation
Ha Ha Ha Ha Ha
When John came to you in the way of righteousness, you did not believe him; but tax collectors and prostitutes did. Yet even when you saw that, you did not later change your minds and believe him. (Mt 21:32)
The Catholic Church has been engaged for a few years in synodality. In simple terms, synodality is action of the Church journeying together. Stripped of all the theological bells and whistles it’s just trying to include the little people in Church decision making1. Synodality is a way of being church together. There has been a bunch written on what synodality means, and because people are messy, and the Catholic Church has at times been much more sympathetic to authoritarian regimes over democratic ones, synodality has been hard for some2to grapple with as a good thing. Some of what has been written has been good while some has been very stupid. In my view, synodality is hard to implement as a concept, useful in implementation, and ultimately powerful in working change on the world. One place I see implementing synodality is that of protest and direct action.
I am not at home at a protest, strike, or on a picket line. I get tired and overwhelmed. My body enters a flooded state of emotions that I manage with multiple time-outs in the shade. This usually isn’t a problem. Part of the point of direct action is to create tension. In the words of Martin Luther King Jr.
Nonviolent direct action seeks to create such a crisis and foster such a tension that a community which has constantly refused to negotiate is forced to confront the issue. It seeks so to dramatize the issue that it can no longer be ignored.
More bodies on the line helps foster the necessary tension. If you are ever a part of a protest, know that the very point is to submit your very being toward fostering a positive tension if your cause is just. The protest needs bodies, you are there to be a body. I have always been much better at being a body on the internet. Virtual direct action can be much stranger. There are so many disperse areas you could be an online body such as call centers, government representatives, Facebook, Twitter, email addresses of executives, LinkedIn, op-ed pages, etc. that it can feel hard to imagine being one body makes a difference. But let me tell you as someone who has worked in marketing before, brand managers feel that tension when a bunch of organized people start yelling at them in a bunch of places on the internet.
July 18, 2023, marks a major step in the fight against Tuberculosis (TB), history’s deadliest disease. Johnson & Johnson agreed to a deal that allows the sale of generics in most low- and middle-income countries, in a win for humanity. This decision will likely significantly cut costs for the most in need, leading to access to treatment for potentially over one million people in the next four years that would otherwise not have access. Over the course of history, over one billion people have died due to TB. Despite incredible advances that make it virtually harmless in places like the US, TB remains the deadliest infectious disease in the world3.
Around 600 deaths in the US (2020)
1.2 million deaths in high TB burden countries
That’s with most people surviving TB even in high burden countries.
The story of TB and other bacterial infections is the same. In the early- and mid-twentieth century, humanity turned the tide in the battle of infectious disease using new treatments including antibiotics and vaccines. While progress was global, access to every tool in the battle has not been consistent nor universal. Poorer countries lack access to medical and drug development infrastructure and robust social funding of healthcare. So, in the late twentieth century when drug resistance to antibiotics began to appear, the progress in poorer countries would prove more fragile to multidrug resistant TB (MDR-TB). For many years there had been little or no progress on the tools used to fight TB. Then Janssen Biotech (a Johnson and Johnson company) developed bedaquiline and in 2012 bedaquiline was approved through the FDA specifically to treat MDR-TB.
Bedaquiline's original patent expires Tuesday, July 18. With that end to the patent the price of the drug regimens for MDR-TB should be cut by 60% as generics will be able to enter the market. But because of a secondary patent J&J and global development companies have been in discussion for months. Global development organizations such as MSF, PIH, and Stop TB Partnerships urged J&J to not enforce the patent beyond July, arguing that most of the funding to develop bedaquiline came from government sources. Many lives are at stake in these discussions, with estimates that around three out of four patients impacted by MDR-TB, over 1.3 million people, would not be able to access bedaquiline over the next four years if the patent continued to be enforced.
J&J isn’t the evil corporation in this story, after all they are an institution that created a drug that has done tremendous good. However, putting patents before patients would have done tremendous harm. Enter into this story John Green and his fans, including me. On Tuesday, John Green, noted author and current acting CEO of Complexly, uploaded an open letter to J&J, ”Barely Contained Rage: An Open letter to Johnson and Johnson” that indicted J&J for not living up to their corporate credo. Additionally, John Green let them know as a CEO that it would be a bad business decision.
This was not mere rhetoric; this was a promise. In popular imagination, internet activism is seen as reactive, flitting from thing to thing. Normally this means that brands can simply ride out an outrage generated by a celebrity or event. However, I have watched John Green, and his brother Hank Green for over ten years. Over the last year Tuberculosis has become a hobby horse for John Green, so many of the vlogbrothers cult4 like following, we sometimes call ourselves nerdfighters, already were aware of the issues of TB. John Green knew he would be able to sustain pressure on J&J. He knew that the people most likely to watch and share this open letter would also come back week after week to hear him continue to be angry with J&J for the next year if things didn’t change. Although I also don’t think he realized how swift and effective the initial pressure on J&J would be to allow generic manufacture of bedaquiline.
Within twenty-four hours of posting his open letter, over half a million people had viewed the video, calls had flooded J&J’s ethics complaint line, #PatientsNotPatents was trending on twitter, and every recent social media post from J&J across Twitter, Facebook, LinkedIn, and Instagram had huge numbers of comments asking J&J to not enforce their patent. J&J released a hilariously bad PR statement on twitter, disabling comments, that tried to do damage control.
Within two days of Green’s video, StopTB Partnerships announced a deal had been reached that allowed sale of generic bedaquiline in the majority of low- and middle-income countries.
John Green gave credit not to the coordinated protest, but primarily to the negotiation by StopTB Partnerships
And here’s the thing, a lot of the protest online was joyful, even fun. And even in victory, as much as the emphasis was on how we were happy J&J did the right thing, we were also happy to dance on the ruins of J&J’s shareholders hopes of making billions off a patent over the next four years. Dancing on the ruins of multinational corporations.
Here’s a selection of some of the memes and tweets
In a video in April of last year Are You Stuck in the Sad Gap? John’s brother, Hank Green discussed one of the major flaws of the internet’s ability to make you aware of many problems but not of solutions. “It’s easier to make people aware of the definite, obvious, clear problem than it is of the misty, vague, and uncertain solutions.” John Green’s follow up video included the idea that “you can’t go deep on everything, but the deeper you go on one topic, the more valuable you become,” and being inspired by Partners in Health to stay in Sierra Leone in philanthropy and listen to what the people who needed help needed for sustainably building back after disaster was more valuable than moving from crisis to crisis. John Green has been significantly influenced by Paul Farmer and therefore indirectly on the very explicitly Catholic approach to tackling societal level problems.
John Green went deep on Tuberculosis with a large number of people, and now it paid off in a pretty spectacular way that may have saved hundreds of thousands, or even millions, of lives. He rightly gives credit to the hundreds of people behind the scenes who have worked to develop, manufacture, deploy, and fight for treatment to bedaquiline along with him. I now have a word for going deep, having priorities, and journeying together as a Catholic as well, that word is synodality - not in service to others for my sake but for our sake. I celebrate this milestone in the fight against history’s deadliest disease. It is not a full win, nor the only problem that remains, but it is a victory - for J&J, for patients, for us journeying together.
I am still angry with J&J for not ending their patent, for the incomplete win, for the many who will likely die after this imperfect deal. It seems likely to me that John Green has the right policy approach of calling them to account, then celebrating when they do the right thing. After all, J&J could have developed many other drugs that are much less impactful toward ending human suffering and death, including cancer treatment which is also a very good thing to treat and could have made them more money with less global responsibility! J&J also is ultimately a collection of people making decisions.
Partners in Health went with the more cautiously optimistic approach, recognizing that J&J didn’t actually relinquish any power in this issue, it will still hold onto patents in most of these countries over the next four years.
But more than anything, I feel personally angry about this issue as a Catholic. Other than PIH, which is a Catholic institution only in the loosest sense that one of its main founders (Paul Farmer) was really into Catholic social teaching,5 no major publication6 of the Catholic Church or major Bishop spoke out on this as far as I know. Now, I get it that there are other things as Catholics we can and should care about. The explicitly catholic teaching angle on this takes a few paragraphs to establish. And hey, maybe all of these institutions, all 176 US Catholic bishops weren’t aware about this major development in the deadliest disease in freaking history.
The silence across the Catholic world doesn’t anger me because of any one person or publications particular silence. Having priorities is good. But look, I spent a long time being a body on the internet for those couple of days. I reached out to Catholic media and Catholic clergy. I looked for some sign that maybe someone with power or influence in the Catholic Church cared about, and I cannot stress this enough (so I’ll make it a big title)
and what I saw was, “Oh, didn’t know about that, maybe catch us next time?” I think I heard my computer laugh at me when I put “Tuberculosis statement by Catholic” in the search bar7. None of the 176 US Catholic Bishops has said a thing.
And I don’t know how else to respond to this except with rage, with a deep feeling of fire burning from my bones and coursing through my veins that this entire edifice of power that could be so blind and deaf to the most obvious suffering in the world needs to be torn down, exploded, and blasted into smithereens. It’s not like this is the first time I worked on something that the institutional church looked at and collectively went shrug. I volunteered for the Covid Tracking Project8 with the Race Data Tracking Project for a year. I know for a fact many in that organization were from different faiths, but the Holy Spirit was absolutely on fire in the work I did there. Then, of course, I would log off after a few hours of writing down numbers of people in each state who had newly tested positive or died of Covid. And log on to social media to see some bishops loudly and publicly not get vaccinated for various reasons, all of them very dumb. I was reminded of this fact when looking to see if someone, anyone had made a statement on bedaquiline.
This is National Catholic Reporter which, to their credit, pointed out that the bishops were being very dumb.
I can’t decide whether to end this on hope or wrath, so I’ll circle back to synodality and try to do both. Maybe those in power in the church need to listen, really listen. Catholic relief services, Catholic activists, Catholic poor people, and Catholic inspired non-governmental organizations serve the poor and lowly in myriad ways. Often in conflict with huge multi-national corporations or authoritarian regimes or even powerful Catholic bishops with dumb ideas. So, I want a more synodal Catholic Church because I find secular communities like nerdfighters, like Effective Altruism9, like the Covid Tracking Project and yes, like some LGBT activists the church persecutes are running laps around the bishops on some of the most important issues of our time.
You can donate to PIHs ongoing project in Sierra Leone, a high TB Burden country which used to have the highest maternal mortality rate in the world. If you wear socks or drink coffee the profits from those also go to PIH Sierra Leone.
If you can donate $2000 or more, you can donate to the matching fund.
If you want to be part of an online protest in the future, there is a company with a patent on TB diagnostics that may need to be pressured at some point.
1 And this first synod it’s not even including a lot more, it’s including a tiny amount more
2 *cough* authoritarians *cough* sorry, got a frog in my throat
3 Covid-19 is close at the moment. I’m not entirely sure people have fully come to grips with what a disaster it is that we now have this new disease that kills at the same order of magnitude as TB. At this point, I’m not sure there is anything much that I can or should do about this other than acknowledge how truly terrible it is.
4 In the descriptive sense, not the pejorative sense. But also, like, this cult like following isn’t particularly evangelical. Come if you are interested, stay if you enjoy, go elsewhere if not.
5 And as a result he also got a lot of air time and space in Catholic media outlets. I think all of this is good!
6 To be fair to America Media, I am aware they would have published something had J&J not made a deal when they did.
7 Shout out to Commonweal and Crux for actually having some stories in the past of TB of substance even if they haven’t covered this one yet. I’m not going to give credit to CNA for having the story on how Pope Francis said that the real disease of today is not TB or cancer, but an absence of love. That didn’t inspire confidence.
8 See bullet 2. Covid-19 was basically the main cause of death at the time.
9 And EAs critics for that matter
Thank you for this post.
I find the closing comment especially striking "So, I want a more synodal Catholic Church because I find secular communities like nerdfighters, like Effective Altruism9, like the Covid Tracking Project and yes, like some LGBT activists the church persecutes are running laps around the bishops on some of the most important issues of our time."
As far as I can tell (and as much as it disappoints me as a fellow Christian), your conclusion is correct.
Hey, I'm super late in responding to this, but thanks for reading! And best of luck with the conference next May