By: Rachel Bier
Tuberculosis (TB), an illness caused by the bacterium Mycobacterium tuberculosis, is the deadliest disease in human history. In the 1950s and 1960s, scientists developed several drugs that could treat TB. These developments meant that TB became a curable disease. However, TB remains a terrible epidemic in poor communities around the world. About 4,000 people die from TB every day, with over eighty percent of those deaths occurring in low- and middle-income countries.
To tackle this enormous global health crisis, on September 26, 2018, the United Nations (U.N.) held the first high-level meeting on ending TB. At that meeting, the participants drafted a resolution that set forth commitments for Member States to follow to reach the goal of ending the tuberculosis pandemic by 2030, which was then adopted by the General Assembly. Since the first meeting, some progress has been made in combating TB. However, the global Covid-19 pandemic has slowed progress and further strained healthcare systems around the world.
In order to set updated and more effective goals to fight TB, the U.N. General Assembly held a second high-level meeting on September 22, 2023. The subject of the meeting was to end the plague of tuberculosis, “in particular, by ensuring equitable access to prevention, testing, treatment and care.” In attendance at the meeting were world leaders, TB survivors, and representatives of civil society organizations. One of the civil society representatives was John Green, a famous YouTuber, YA novelist, and TB activist.
Green, working in partnership with other TB activists like the global health and social justice organization Partners in Health (PIH), and his community of online followers known as Nerdfighteria, has played an important part in the fight to end TB. Most notably, Green’s activism has directly made the critical medication Sirturo, known generically as bedaquiline, more accessible to patients in developing countries.
Bedaquiline is a medication that targets forms of TB that are otherwise drug-resistant, making it a highly important tool in combating the TB epidemic. Bedaquiline was developed and patented by the pharmaceutical giant Johnson & Johnson (J&J) in 2012. The majority of the funding for bedaquiline’s research and development came from public funding, but J&J held a monopoly on the drug. J&J’s patent was set to expire in 2023, which would allow the manufacture of cheaper generic versions and could save the lives of millions of low-income patients.  In an attempt to “evergreen” its control over the supply of bedaquiline, J&J slightly modified the drug’s composition in order to be able to enforce a secondary patent. Imposing this secondary patent would mean generic bedaquiline would remain out of reach of scores of TB patients for several more years. Hundreds of thousands of people who could have otherwise been cured would die of TB.
Determined to stop this from happening, on July 11, 2023, John Green posted a video on his YouTube channel Vlogbrothers entitled, Barely Contained Rage: An Open Letter to Johnson & Johnson. In the video, he described the great injustice that would occur if J&J enforced its patent and allowed thousands of people to die from lack of access to generic bedaquiline. He called on J&J to remain true to its corporate credo: “We believe our first responsibility is to the patients.” Green then called on his followers to pressure J&J not to enforce its secondary patent. In response, J&J put out a statement denying that it was acting in bad faith. Green, however, did not back down and continued to speak out against the company across his various social media platforms. After only two days of Green’s vocal online pressure campaign, J&J caved. Stop TB Partnership, a U.N.-hosted TB-fighting organization, announced that, after negotiating with J&J, the company would allow the manufacture of generic bedaquiline in low- and middle-income countries where it was so desperately needed.
When John Green spoke at the U.N. high-level meeting in September, he explained how today, tuberculosis deaths are not the results of a bacterium. When patients of TB, a curable disease, die because human-built socioeconomic systems prevent them from accessing the treatments that would cure them, their deaths are “caused by … human choice.” Green went on to urge the other participants of the meeting to change this reality: “We have chosen the world that we share today and we can choose a better world. We are currently choosing a world where 1.6 million people die of tuberculosis and I believe that with your help together … we will choose a world where no one dies of tuberculosis.”
Green and his fellow activist’s work has been impactful. At the conclusion of the meeting, Member States approved a political declaration renewing their vow to end TB by 2030. The declaration, which they drafted for General Assembly adoption, frequently stresses the importance of guaranteeing access to TB medications. The new resolution mentions the necessity of ensuring access to generic TB treatments three times; the 2018 version only did so once.
J&J is a company worth over 300 billion dollars. And yet, in a matter of days, hardworking activists, a passionate author, and a social-justice-oriented online community were able to bring a megacorporation to its knees. This advocacy blocked the evergreening of a patent, impacted policymaking at the highest intergovernmental levels, and saved thousands of lives. Looking to the future, it is clear that grassroots activism is a key tool in the fight against TB and healthcare injustice.
Rachel Bier is a Staff Editor at CICLR.
 Ilaria Barberis, Nicola Luigi Bragazzi, Lucia Galluzzo & Mariano Martini, The History of Tuberculosis: From the First Historical Records to the Isolation of Koch's Bacillus, 58 J. Preventative Med. Hygiene E9, E9 (2017).  Report of the High-Level Consultation on Accelerating the Development of the M72/AS01E Tuberculosis Vaccine Candidate, at 1, World Health Organization [WHO] (2019), https://cdn.who.int/medinotedocs/default-source/documents/tuberculosis/report-consultation-accelerating-tb-vaccinedbd25166-d9f4-4f13-939c-171367b4dd8c.pdf?sfvrsn=6e0fb8a1_1&download=true [https://perma.cc/BU5N-CZYZ].  History of World TB Day, Treatment, Centers for Disease Control and Prevention [CDC], https://www.cdc.gov/tb/worldtbday/history.htm [https://perma.cc/4L2C-G8PZ].  World Health Organization [WHO], Status Update: Reaching the Targets in the Political Declaration of the United Nations General Assembly High-level Meeting on the Fight Against Tuberculosis, at 2, WHO/UCN/TB/2023.4 (Sept. 2023) [hereinafter Status Update].  Id.  Id.  Tuberculosis, WHO: Fact Sheets (Apr. 21, 2023) https://www.who.int/news-room/fact-sheets/detail/tuberculosis [https://perma.cc/5PCT-YUPA] [hereinafter Fact Sheets].  G.A. Res. 73/3, at 1 (Oct. 18, 2018).  TB is a Pandemic, TB Alliance, https://www.tballiance.org/why-new-tb-drugs/global-pandemic#:~:text=Tuberculosis%20is%20a%20global%20pandemic,1.6%20million%20in%202021%20alone [https://perma.cc/26X7-D7BK].  Id.  Id.  Status Update, supra note 4, at 2.  Preparing for the UN High-level Meeting on the Fight Against Tuberculosis, 2023, WHO, https://www.who.int/activities/preparing-for-the-un-high-level-meeting-on-the-fight-against-tuberculosis--2023 [https://perma.cc/S2GU-JQ7S].  Id.  Vlogbrothers, John Goes … to the UNITED NATIONS?, YouTube (Sept. 27, 2023), https://www.youtube.com/watch?v=tMhgw5SW0h4 [hereinafter John Goes].  John Green, About John Green, https://www.johngreenbooks.com/bio [https://perma.cc/8TT2-D4Q5].  Jenny Lei Ravelo, 4 Questions for John Green, the 'Tuberculosis Hater', devex (Oct. 5, 2023), https://www.devex.com/news/4-questions-for-john-green-the-tuberculosis-hater-106304 [https://perma.cc/B946-NJJN].  PIH Urges Further Steps to Ensure TB Drugs Available to All, Partners in Health (July 13, 2023), https://www.pih.org/article/pih-urges-further-steps-ensure-tb-drugs-available-all [https://perma.cc/G44J-MZAE].  Nerdfighteria Newsletter, https://nerdfighteria.com [https://perma.cc/3UB6-6LGL].  Treatment of Multidrug-Resistant TB: Bedaquiline Fact Sheet, CDC, https://www.cdc.gov/tb/publications/factsheets/treatment/bedaquiline.htm [https://perma.cc/LN5V-RR4J] [hereinafter Bedaquiline Fact Sheet].  Lucy Tu, How Advocates Pushed Big Pharma to Cut Tuberculosis Drug Prices, Sci. Am. (Aug. 12. 2023), https://www.scientificamerican.com/article/how-advocates-pushed-big-pharma-to-cut-tuberculosis-drug-prices/ [https://perma.cc/N5ZU-7D38].  See Bedaquiline Fact Sheet, supra, note 20.  John Green, Why is a Curable Disease Still Allowed to Kill Millions?, Wash. Post: Opinions (May 16, 2023, 6:00 AM), https://www.washingtonpost.com/opinions/2023/05/16/multidrug-resistant-tuberculosis-treatment/ [https://perma.cc/5RUK-6Y9U].  Id.  Id.  Id.  Id.  Id.  Vlogbrothers, Barely Contained Rage: An Open Letter to Johnson & Johnson, YouTube (July 11, 2023), https://www.youtube.com/watch?v=tMhgw5SW0h4.  Id.  Id.; see also Our Credo, Johnson & Johnson, https://www.jnj.com/credo/ [https://perma.cc/LN5V-RR4J].  See Vlogbrothers, supra note 29.  Johnson & Johnson (@JNJNews), Twitter (July 12, 2023, 12:38 PM), https://twitter.com/JNJNews/status/1679168314986094592?lang=en (“It is false to suggest—as some recently have—that our patents are being used to prevent access to SIRTURO® (bedaquiline), our medicine for MDR-TB.”).  John Green (@johngreen), Twitter (July 12, 2023, 5:36 PM), https://twitter.com/johngreen/status/1679243466524459008; Id. (July 12, 2023, 6:12 PM), https://twitter.com/johngreen/status/1679252298055274496; Id. (July 13, 2023, 11:11 AM), https://twitter.com/johngreen/status/1679508967053983745; John Green (@literallyjohngreen), TikTok (July 12, 2023), https://www.tiktok.com/@literallyjohngreen/video/7255017410808352042.  Global Drug Facility Update on Access to Bedaquiline, Stop TB Partnership (July 13, 2023), https://www.stoptb.org/news/global-drug-facility-update-access-to-bedaquiline [https://perma.cc/B6BH-JT79].  See John Goes, supra note 15.  Id.  Id.  U.N. GAOR, 78th Sess., at 1, U.N. Doc. A/78/L.4 (Sept. 25, 2023).  Id.; cf. G.A. Res. 73/3, supra note 8.  See U.N. Doc. A/78/L.4., supra note 39, at 11, 13; cf. G.A. Res. 73/3, supra note 8, at 11.  Johnson & Johnson, Financial Times, https://markets.ft.com/data/equities/tearsheet/summary?s=JNJ:NYQ [https://perma.cc/YW6J-D77U].