John Green’s obsession with tuberculosis started in 2019, he says in a video from August 15th: “I visited the Lakka tuberculosis treatment center in Sierra Leone and met this boy, Henry, who…immediately began walking me around the hospital. I thought he must be the child of a nurse or something.” But, Green adds, “when I spoke later to one of the doctors, he told me Henry is a patient… It turns out Henry was not nine years old… he was sixteen — it’s just that his body had been ravaged by tuberculosis.”
In 2019, John Green watched Henry and his doctors fight global health authorities for access to Bedaquiline, which was capable of saving Henry’s life, and eventually “Henry became the first person in Sierra Leone to receive… Bedaquiline.” After more than two years of fighting his tuberculosis, one of Henry’s doctors said that “it was like magic. Within three weeks he went from what would have been his death bed to walking and talking and laughing. And eventually, he was cured.” Witnessing this battle inspired John Green to take up the fight against tuberculosis.
On July 11th, John Green posted a video to YouTube entitled Barely Contained Rage: An Open Letter to Johnson & Johnson. In the video, Green states that Johnson & Johnson, the company who developed the drug Bedaquiline — brand name Sirturo — that had such a huge impact on Henry’s ability to fight his disease, were about to severely limit worldwide access to their life-changing drug. Green explains “in 2003 they got to file a patent for the drug compound Bedaquiline. Then in 2007 they filed a secondary patent for Bedaquiline with this added fumarate salt.”
This change in the product extended the time Johnson & Johnson could be the sole manufacturers of Bedaquiline — a right limited to them as long as they hold the patent—a deliberate choice to prevent generics. Generics are important because they are generally much cheaper than brand name options. Green explains in the video that “a study by MSF indicated that if generics were allowed to be produced globally, the price of Bedaquiline would drop by 67% from $1.50 per pill to 50¢ per pill.” This might not matter in the US, but to countries where multidrug-resistant tuberculosis has the most impact, this price drop would be incredible. Green ends the video with a call to action: social pressure against Johnson & Johnson to not continue enforcing their patent on Bedaquiline.
And it worked. On August 30th, it was announced that Johnson & Johnson had reached an agreement with Stop TB Partnership’s Global Drug Facility that amounted to historic price reductions — up to 55% for their brand-name Bedaquiline. While a huge first step, this agreement was limited to certain countries. Johnson & Johnson did not completely release their patent.
However, on September 30th, Johnson & Johnson confirmed their intent not to enforce patents for Sirturo (Bedaquiline) for the treatment of multidrug-resistant tuberculosis in 134 low and middle income countries. They agreed to allow generics to be used in places with a high burden of TB. At this time, Johnson & Johnson encouraged “refocusing global efforts on the most-pressing barrier to access: underdiagnosis of the disease.”
Having largely won his battle with Johnson & Johnson over Bedaquiline, John Green does exactly that: he takes up this battle against underdiagnosis. On September 12th, he posted a video entitled Barely Contained Rage: An Open Letter to Danaher and Cepheid. He starts by explaining the importance of testing and diagnosis: “this year [of] the 10 million people who will get sick with TB, about 4 million people will go undiagnosed, often dying before they can get an accurate test.” This is further complicated, though, with his addition that “among those who do get diagnosed, most are diagnosed via a person looking through a microscope.” This method is outdated, as it frequently misses cases and is unable to identify what kind of TB someone has.
This is not the only way: there is a test made by a company called Cepheid, which is owned by the larger company Danaher, that “[can] tell people not only whether they have TB, but which drugs their TB will respond to so we [can] immediately begin curative treatment.” The real problem, Green explains, is that their test is incredibly expensive.
Green breaks down the current pricing of $10.00 for basic tests which detect TB, and $15.00 for a test that can identify TB and resistance to five TB drugs. Green points out that studies “[found] that it costs somewhere between $3.00 and $4.50 [to make the cartridges].” This means that Danaher is charging between 220% and 500% price margins for their test cartridges. This video from Green sparked yet another huge whirlwind of social pressure and put Danaher and Cepheid under the global spotlight. And once again, it worked.
On September 19th, Global Fund, Stop TB Partnership and USAID announced a new collaboration with Danaher to reduce the price of their TB test. This agreement involved a 20% price reduction on tests sold to Global Fund. The statement acknowledges that “by reducing the price of Cepheid’s Xpert® MTB/RIF Ultra test cartridge to $7.97, Danaher will be selling at its cost and will earn no profit.”
Later on September 19th, John Green made another video to address this win, entitled So, um…. GOOD NEWS?!?!?! in which he notes that “it’s a big win for our community,” thanking the groups like Doctors without Borders, The Treatment Action Group and Partners in Health, among others. More recently, John Green spoke on multiple panels and even spoke at the United Nations’ High Level Meeting on Tuberculosis on September 22nd.
As he sums up well in a tweet from September 23rd: “If I had a nickel for every time [my audience] has pressured a large corporation into reducing prices for critical tools to address the tuberculosis crisis, I’d have two nickels —which isn’t a lot, but it’s weird that it happened twice.”
Junior Ella Peeples is a Staff Writer. Her email is epeeples@fandm.edu.