Unpacking #PatientsNotPatents with John Green

From starting VidCon with his brother, Hank, to writing best-selling novels like The Fault in Our Stars, John Green is known for wearing many hats.

But since launching their Vlogbrothers YouTube channel in 2007, the Green brothers have often rallied their passionate "Nerdfighteria" community to raise millions of dollars and voice their support for causes they believe in.

Over the last several years, this nonprofit work has included advocating to make life-saving tuberculosis (TB) medication more affordable for people in low- and middle-income countries.

Their latest campaign? In a video uploaded last week, Green called on Nerdfighteria to pressure Johnson & Johnson, as the company was set to renew a patent that would keep the medication inaccessible for four more years—a timeframe in which 6 million people would unnecessarily die from TB.

Through memes and tweets, Green's #PatientsNotPatents campaign trended on Twitter all week. And on Thursday, J&J finally agreed to sell a cheaper generic.

We caught up with Green several hours after the news broke to chat about the fight against tuberculosis, how creators can mobilize their communities to fight for social change, and what gets him most excited at this juncture in his YouTube journey.

The following interview has been edited and condensed for clarity.

Appreciate you taking the time to chat today, John! Seems like it's been a pretty busy 24 hours on your end.

I'm doing fine. I'm a little tired. I didn't sleep much last night, but I'm doing great.

I’d love to jump into the background of today’s events a bit.

So the background here: My brother Hank and I have been involved in issues around global health for almost 20 years. And I've worked with global health organization Partners in Health through the Project for Awesome and other projects that we've done on YouTube and elsewhere.

We also have this multi-year, $50 million project in Sierra Leone. Hank and I, along with our community, decided to raise money to support the Sierra Leone Ministry of Health and Partners in Health by building a world-class maternal hospital in Sierra Leone, which at the time had the worst maternal mortality rate in the world.

And in 2019, when my wife and I visited Sierra Leone, on the last day we visited the Lakka TB hospital. At the time, I had no idea that TB was the deadliest infectious disease in the world—I kind of thought of it as a disease of, like, 19th century British poets.

But to see the suffering that was being caused by TB, to know that it's a curable disease and to see the antiquated medicine that was available to people in Sierra Leone for no reason (except that they happen to live in an impoverished country instead of a rich one)...it was a real wake-up call for me.

I came home and started asking myself, How did I not know that the world's deadliest infectious disease was tuberculosis? How did I not understand the scope of this problem?

So I spent the last four years—and especially the last year-and-a-half—learning about TB, reading everything I can, and learning from experts in the field. And that's been a really fulfilling creative project for me, but also a personal one.

At what point does Johnson & Johnson enter the story?

The other thing to understand is that when it comes to multidrug-resistant tuberculosis, there is this kind of old treatment, which involves injectable drugs that are highly, highly toxic. They cause permanent deafness in a large percent of people who take [them]. They can cause deaths from liver or kidney toxicity.

But for the last 10 years, we’ve had this drug bedaquiline. I was speaking recently with a TB doctor in Sierra Leone who…had a kid who was on his deathbed, and five days later, was walking again. Bedaquiline is that powerful of a drug.

However, for the last 10 years, Johnson & Johnson has had the exclusive right to produce and sell bedaquiline, which has made it unaffordable for a huge percentage of people. That doctor in Sierra Leone was only able to get it because of extraordinary efforts by the Ministry of Health and nonprofit organizations. And if he hadn’t, that kid would’ve died, like many other kids who have died.

And from conversations with friends at Partners in Health and Doctors Without Borders, it became clear that Johnson & Johnson was attempting to extend the length of their patent beyond the 20 years that it should last and make it last an additional four years. In those four years, 6 million people who need access to bedaquiline won't be able to get it.

That’s just completely unacceptable to me. So initially, I wrote an op-ed for The Washington Post in May, which got some attention. But it didn't really blow up until I made a YouTube video this week.

When looking at all the health concerns facing our country (and our world), how do you choose what causes to personally amplify? Why is this the battle you picked?

I think there are a lot of answers to those questions. One answer: Everybody has to pick a focus, and you can't go deep on everything. I'm never going to be an expert in astrophysics, tuberculosis, and 18th century French poetry.

I have to make choices. And sometimes making those choices, especially when it comes to the nonprofit work you want to be involved in, is really difficult, because there are so many problems in so many directions.

Our starting point was many of our viewers live in the United States, but not all of them. So this is a global community, and we want it to be a global community that reflects global values. And one global value that we see as really essential is that all human lives are equally valuable.

One of the places where we most glaringly see the world fail to live up to the fact that all human lives are equally valuable is in access to health care and education, which is another focus of ours. Having made that choice, we try to learn about who's doing the work that we want to be doing—the work that lasts for generations. Which means not just building a hospital to treat people, but also building a hospital that could be teaching another hospital, so another generation of people can become nurses and doctors and midwives.

But I think you can start in a lot of places when you're a creator with an audience. I'll give you an example: I think MatPat and Markiplier do awesome work with St. Jude's. And childhood cancer is a massive tragedy, not just in the U.S., but globally.

In no way do I think, like, “Oh, I wish they had focused where we focus.” I'm happy that they focus where they focus. And I'm happy that we focus where we focus. And so I think there has to be room for that.

More and more though, we felt like we had to make a choice. Because otherwise, we were just going to be paralyzed, sitting on a pile of money forever and not knowing what to do with it. As well as sitting on, you know, this amazing, wonderful, deeply active audience, and never being able to utilize the energy in that audience for good.

As far as tuberculosis itself goes, it's the world's deadliest infectious disease, and most of us don't hear about it because it almost exclusively affects people in impoverished communities.

And if we don't do a better job of expanding access to treatment to multidrug-resistant tuberculosis, it won't always be the case. Because eventually, a strain that we can't control will emerge, and it will be very bad for everyone on Earth.

You brought up the op-ed you wrote for The Washington Post and contrasted some of the impact it had versus the video you put out earlier this week. Whether it’s from day zero or somewhere along the journey for these types of campaigns, what was going through your mind in terms of how this could find the most success?

Well, my initial thought was that publishing this op-ed in The Washington Post will get the attention of J&J, because they’re a pharmaceutical company, and they probably read newspapers.

And the best way to deal with this is, in my opinion, quickly and quietly. To have J&J say, “You're right, we shouldn't evergreen this patent. It's bad for business, and if we continue to pursue it, this pressure campaign will probably get worse.”

That may be part of what they did. But their communication on this has been, I would say, poor. And that has made it really challenging. At no point have they reached out to me, even though I've tried to reach out to them several times, or anyone in the global TB community whom I work with—and these are big organizations.

So I think that would have been appropriate for them to answer the letter that MSF and hundreds of tuberculosis researchers submitted to their CEO, and they didn't respond to that. I think it would have been appropriate to respond to the op-ed, they didn't respond to that. And so at some point, if they're not responding, I said to myself, “Well, I'm pretty sure I can get them to have to respond.”

I think the strategy for this stuff is to escalate slowly. I tried to escalate slowly, but also, you know, this patent expires in five days. So I got to a point where we were seven days away from the patent expiring and I just felt like “Well, time to escalate.” And that means a much more public campaign with a much more specific set of calls to action.

To that point, why do you think that mobilizing your audience ended up being the best method to really grab J&J’s attention, and to get them to respond in the way they have?

Well, my audience has spent the last year learning about tuberculosis with me. And so, you know, our community is—as far as Internet communities go—very well informed about the global burden of TB.

It wasn't like I made a video out of nowhere that surprised them, I've been talking about it constantly for over a year. And so they were ready. They understood. And they also understood that this was a specific, specific problem that they could really help address. And I think, frankly, they did.

Things are moving so quickly, but what do you think happens next? I'm sure there's a disconnect between what you think happens next versus what you hope to happen next.

Well, I think that if you'd asked 99% of people what today would look like, they wouldn't have said that the [global nonprofit] Stop TB Partnership would publicly announce that J&J is allowing the distribution of generics in almost every country with a high burden of tuberculosis.

And for better or worse, one of my ongoing character traits is that I am absurdly optimistic about peoples’ desire to make the world better. And I think almost everyone wants to live in a better, safer, more equitable world, even people who work at large multinational pharmaceutical corporations. And I don't think they would have gotten into that business if they didn't believe in that.

What I hope—and therefore believe—is that J&J will release a specific statement or even make private assurances that this is an open-ended, no strings attached promise that lasts forever and applies to every country where it can legally apply.

For other creators, what’s the playbook? How can they learn from your experiences advocating for social change—and mobilize their own communities around topics that they care about?

I think you have to go deep. Educate your audience over time and be consistent.

And like every other part of making stuff online, it has to come from a place of real passion and real belief. It can't be about what’s good for your brand because it just won't work quite as well.

But the other thing I'd say is that you've got to listen to your audience. The truth is, do we give 100% of the profit from our Awesome Coffee and Socks companies to Partners in Health because we're great people? Or do we give 100% of the profit because our community demands and expects that?

I think it's probably the latter. You know, the nature of our community after 17 years is that we understand their expectations, and they understand us. And if they're a big part of creating the value, they want to be a big part of deciding where the value goes. And I think that's a very reasonable expectation.

We haven't really led Nerdfighteria. Nerdfighteria has led us.

I’ve chatted with some creators, especially younger folks, who do want to speak on topics and raise money for causes they care about…but they're either afraid to get things wrong or alienate their audience.

Do you have any advice for a young creator trying to navigate their desire to do good while ensuring they’re working with the right activists and nonprofits?

That’s a really hard thing to navigate. There are nonprofits with good reputations that don't always do good work. And once you have relationships with certain nonprofits, it's hard to move away from them.

All of those concerns are legitimate. And the concern about getting things wrong is legitimate.

But man, I get stuff wrong all the time. I even got something wrong today. You know, it’s a part of learning. And part of modeling how we learn—how we become compassionate—is acknowledging when we're wrong, thanking people with more expertise than us for correcting us and moving forward with that new knowledge.

So I think all those concerns are legitimate, but what I would say is talk to the people who are at the center. I remember when we were first beginning to have conversations with a lot of different global health nonprofits, I spoke to an expert and asked, “Have you ever heard of Partners in Health?”

And he was like, “Yeah, of course. They’re the only people I give money to.” That resonated with me.

It's one thing, you know, for Bill Gates or some other big funder to work with this group or that group. But when you're as proximal as you can be to the suffering and injustice you're trying to address and the people who are most affected by that injustice are telling you who they think helps, I think that can be very revealing.

There’s obviously a lot going on in your life right now, personal and business-wise. What really gets you the most excited to wake up every day and tackle all the things that you tackle on a daily basis?

Yeah, I mean, we've had a rough couple of months here. You know, my brother has been undergoing cancer treatment. I've been the thoroughly-subpar CEO of our companies.

But this work energizes me. I'm in a place where I can work with others to make a real difference. Where I can meet and work with fascinating, brilliant people.

I emailed a tuberculosis doctor two years ago—one of the leading tuberculosis researchers in the world. And I said, “Hi, I'm a young adult novelist and I’m interested in tuberculosis.” I had emailed her at 9:30 pm, and she replied immediately saying, “Can I call you now?”

There are a lot of people out there who are desperate to be able to harness the skills that we have as creators and communicators. Maybe professors at Harvard know more about the topics that you're passionate about than anyone else on Earth.

But they don't understand how to make a TikTok with a lip sync of Saweetie. Or they don’t want to.

If somebody can merge those worlds for them, they're hungry for that and ready for that. They want to be able to spread the word about this suffering and these injustices, which is why I’m never afraid to reach out.

So you’re most excited about your nonprofit work?

For me, this is a big part of what has allowed me to sustain a 17-year career as a creator on YouTube.

The views go up, the views go down. The likes go up, the likes go down. And it's easy to feel like your value as a person is growing or shrinking.

But gosh, when you're worrying about the reality of injustice in this world, the importance of those views just shrinks. And the thing that you're grateful for is to be able to encourage and accompany and work with people who are changing the world every day.