The power of getting people’s attention at the right moment can mean a world of difference in battling corporate greed, and John Green (“the book one”—even though Hank, his also famous brother, is also a bestselling author) harnessing the power of Nerdfighteria might have just changed the world by adding to the decade+ effort in getting Johnson & Johnson to release their patent on the most current drug to fight Tuberculosis (TB), bedaquiline.
While being vocal on many issues, Green rarely calls out anyone by name online. Instead, like the educators they are, Hank and John will take a topical subject and use it to springboard off into history or another subject to relay context and empathy. However, neither will miss an opportunity to use their status or wealth to improve the world. For years, organizations like Doctors Without Borders, Partners in Health, and many others with Stop TB Partnership have worked to raised awareness about J&J stalling bedaquiline access.
Still, things weren’t looking good when Green got very interested in fighting TB—I’m talking writing Washington Post Op-Eds and getting deep into TuberculosisTok—but it seems like he’s used his platform to help these organizations score a big win.
Tuberculosis in the 21st Century
To many privileged enough at least have medical care within reach (even if accessing the care will send you into massive debt), TB sounds like a disease of the recent past, relegated to a plot device about 1800s French hipsters (La Boheme). After 2018, it pierced pop culture again thanks to Red Dead Redemption 2. (No spoilers!) It feels so far in the past because there was a concerted effort to cure it in the 1920s and vaccinate everyone—well, more like everyone who could afford it.
Much of the Global South was left behind by the mid-1900s, making TB a daily reality in less affluent regions. Failing to immunize everyone weakened the effectiveness for those vaccinated over time. Currently, the mostly airborne infection kills roughly 1.5 million people yearly.
Before 2020, TB was considered one of the world’s most infectious killers. While TB is very deadly, most infected people (roughly 90%) carry TB asymptomatically. Latent TB can lie dormant in someone for months or even years. It will wait to activate when your body is fighting something else. Like the current COVID-19 pandemic, TB is most violent towards immunocompromised individuals. This includes people with longterm illnesses, the elderly/young, and those experiencing pregnancy or organ transplants.
#PatientsNotPatents
One week before the July 18 deadline for J&J to renew their patent again, Green released an open letter (well, video) in which he called out the pharmaceutical giant for manipulatively hoarding the recipe and working the patent system. While he laid out how J&J manages to get by on barely changing bedaquiline to keep the patent, he also went beyond the numbers and talked about people in Sierre Leone he’s met who survived TB.
The Green brothers have worked with Partners in Health for over five years to construct a maternal health clinic in Sierra Leone. Like many former colonies, the West African nation has a struggling healthcare system. In Sierra Leone, the maternal mortality rate has improved, but in 2017 about 9% of births resulted in the parent’s death.
With over $40 million raised by the Greens, The Maternal Center of Excellence opened to “provide advanced maternal and child health services in Kono District and beyond. It will serve as a hub for global innovation in maternal health to be replicated in Sierra Leone and around the world.” During visits, Green met firsthand with doctors who treated TB and patients that survived it. One new story he shared in his video was of students previously on their deathbeds until they got access to J&J’s bedaquiline. After treatment, the students recovered and continued their education.
Green explained that if J&J moved forward with another four-year extension of their patent (after holding it for over 20 years), it would keep the drug inaccessible and kill roughly six million people over the next four to five years. He called on those watching to contact J&J and urge them not to renew the patent. Green urged J&J to commit to allowing generics to reach patients in less-affluent countries.
When you attempt to evergreen a patent, even though you know the decision will cost hundreds of thousands of human lives over the next four years, you’re tarnishing your corporate reputation. I’ll quote [your credo] back to you. “Our first responsibility is to the patients.” I hope you will embrace that promise.
Johnson & Johnson indirectly responds
Nerdfighteria (the online community around the Greens since 2007) and their allies acted quickly on his call. Across the web, people shared scripts for contacting J&J and lots of memes.
Additionally, they shared how much tax money went into the development of this drug that J&J was refusing to allow others to use without paying a steep price. In the letter, Green suggested researchers found going generic could reduce the price by 67%. However, others have found that it could be reduced even further. In both instances, J&J could still profit yearly while a generic is on the market. Parts of the J&J website went down, possibly to the overload in requests from Nerdfighteria.
Enough people responded to Green’s call to action via phone calls, emails, comments, and tweets that within 24 hours, J&J put out a statement. On Twitter, J&J vaguely addressed anyone and everyone criticizing their patent on bedaquiline.
The company used what it has done so far to deflect blame and criticism. Public science communicators like Green’s brother, Hank Green, explained why this PR statement is so misleading. While J&J may partner with over 150 countries to help provide generics, this doesn’t mean it is releasing the patent. Hank noted that some countries have different medical patenting systems and fewer loopholes for J&J to avoid releasing the drug. He hypothesized that those 150+ countries that J&J says have access to generics only have that access because J&J was forced to, not due to altruism.
Big news in fight against TB
On July 13 (the next day), Stop TB Partnership announced that J&J granted them a license to make and supply bedaquiline generics. This is “for the majority of low-and middle-income countries, including countries where patents remain in effect.” Stop TB Partnership told Forbes the deal extends to most places outside of Eastern Europe and Asia. J&J already had a deal with a private pharmaceutical company (Pharmstandard) to distribute in those regions.
So, while the company has not announced a release of the patent, many more lives will be saved. This will change the lives of not only the people who will now get to live, but their family and community. While not the best outcome, the Greens, and many organizations, nevertheless celebrated this massive achievement. These negotiations between J&J and Stop TB Partnerships had obviously likely gone on over months. This public pressure campaign might’ve been that last, major push in Stop TB Partnerships’s favor, as Green and TB activists have stated.
This controversy also doesn’t spell the end of trouble for J&J. The same day of Green’s open letter, the FDA found J&J electrosurgical tools were resulting in patient injuries. Additionally, J&J is struggling to dodge mounting lawsuits regarding its toxic baby powder. The company was found knowingly selling asbestos-laced baby powder for 50-ish years and then targeting Black/brown women to buy these products (a controversy recently called out at the beginning of Across the Spider-Verse).
After a judge in 2020 ruled the company had “evil motive or reckless indifference,” J&J essentially said hold my glass as it amputated the subsidiary over the product and declared bankruptcy to avoid paying out to more victims.
(via Twitter, featured image: screencap, Johnson & Johnson)
