When Johnson & Johnson refused to end their patent on a life-saving tuberculosis (TB) drug, beloved author, internet personality, and passionate global health advocate John Green called on the internet to take a stand.
After thousands of people called on the pharmaceutical company to make tuberculosis treatment accessible and affordable to those who need it most, Johnson & Johnson announced Thursday morning that it would grant licensing to supply generic versions of the drug to low- and middle-income countries, in partnership with the Stop TB Partnership.
But first, a quick overview of the circumstances that led to this good news —
The Patent
In late 2012, the FDA approved a new medication called bedaquiline to treat drug-resistant tuberculosis. This approval came after decades of research and testing.
The drug, developed and owned by Johnson & Johnson, was approved for use and sale under the name SIRTURO. Despite its ownership by J&J, the research and development of the medication were largely publicly funded.
Since 2003, J&J has maintained a patent for bedaquiline, preventing generic versions of the medication from being produced and distributed.
In 2007, the company filed a second patent on an additive to the drug, extending its ownership in a practice known as “evergreening.”
These patents gave the company a monopoly on the drug and allowed them to set their own price as the sole producer of the medication.
J&J’s original 2003 patent was set to expire on July 18, 2023, generating excitement among scientists and medical professionals eager to see a generic version of the drug create accessible treatment.
However, J&J decided to honor its 2007 patent, effectively maintaining its monopoly of the drug and preventing generics for an additional four years.
While many countries, including the United States, have legally denied J&J’s “evergreen” patent extension, many other countries still do not have access to these more cost-effective generic treatments.
The Response
Upon learning this news, New York Times Bestselling Author John Green took to the internet.
Green, who has developed a reputation as an amateur tuberculosis historian and an established philanthropist, shared the news from J&J in a YouTube video explaining the implications of J&J’s patent extension.
“During those four years, experts estimate that up to six million people who would have access to bedaquiline in a world of generics won’t be able to afford it, and most of those people will die,” explains Green.
“So if it sounds like I’m angry, that’s because I’m angry.”
As Green reminds viewers, tuberculosis is the world’s deadliest infectious disease — despite the fact that it is curable.
This fact is particularly staggering to individuals living in wealthy countries, where investment in treatments has resulted in the near eradication of the disease, keeping it out of mind as it is not a part of daily life.
In many other areas of the world, though, TB continues to claim lives. In 2021, the WHO reported 1.6 million deaths from tuberculosis.
J&J’s bedaquiline has the potential to be an invaluable tool in the fight against tuberculosis, but its price makes it unattainable to millions of vulnerable people who could be saved by it.
A generic version of the same medication would cost an estimated 60% less than its J&J-owned alternative, creating a critical pathway to access for patients in the countries currently affected by the extended patent.
Green appeals to the humanity of the people behind these decisions at J&J — and to his viewers.
“Johnson & Johnson is not some evil monolith,” he says in the video. “It’s a company made out of people, and I genuinely believe that most of those people want to make the world better.”
Green cites the company’s Credo in the video, which starts with this sentence:
“We believe first that our responsibility is to the patients, doctors, nurses, mothers, and fathers, and all others who use our products and services.”
The company’s decision to place the financial value of the patent over the value of the lives of patients stands in conflict with this statement, and Green used that conflict to inspire action.
The Action
Green’s video goes beyond simply revealing J&J’s disappointing decision. Rather, he calls on viewers to take action and bring attention to the issue, something his online community is used to hearing and doing.
Along with his brother Hank, John has a long history of organizing an online community for good. Hank and John’s fans, known to the internet as Nerdfighters, have built a reputation for raising money for charitable causes in creative ways.
From the annual Project for Awesome, to charitable coffee, soap, and sock subscriptions, Nerdfighters have contributed millions of dollars to various charities and organizations.
The community’s latest project is a commitment to build, staff, and maintain a hospital in Sierra Leone in partnership with Partners in Health. This project has raised nearly $40 million so far.
Green’s video gained over 500,000 views within its first 22 hours live. Given the community’s track record, it’s no surprise that viewers followed John’s lead and took steps to bring attention to the bedaquiline patent.
Patients, Not Patents: Public accountability for Johnson & Johnson
As mentioned, Green tactfully illustrated the dissonance between J&J’s Credo and its actions to evergreen the bedaquiline patent.
“It might cost J&J some pennies, but that should be OK with them, because they set their credo in stone at their headquarters,” tweeted his brother, Hank, about the company’s decision.
“It is beautiful, and it begins with the words ‘We believe our first responsibility is to the doctors, nurses, and patients.’”
Any individual can submit a concern to the company online — or share their concerns on social media.
John’s second call to action is simple: make noise and raise attention online.
While J&J is a private company able to make its own decisions, consumers are also able to raise awareness of these decisions and their impacts.
Nerdfighteria has risen to the challenge of doing this through social media. In fact, many Nerdfighters did so with strategically crafted memes.
Within two hours of the video going live, the Patients Not Patents hashtag trended on Twitter. J&J’s Twitter accounts, @JNJNews and @JNJGlobalHealth, received thousands of mentions and replies.
Prominent health organizations and even celebrities joined the cause online, too.
“You can use your voice to save millions of lives this year,” said Wonder Woman actress Lynda Carter, sharing John’s video in a tweet.
Treatment Action Group shared an open letter to J&J. Partners in Health joined the fight online as well, calling for the company not to enforce its evergreen patent.
“I was reminded today of the old adage: never underestimate Nerdfighteria,” shared John about the community’s response.
“Thousands of messages to J&J about an illness and patient population too long neglected. I love this community so much and am so, so grateful for it.”
With just a week left until the expiration of the original contract, the need to call for action is pressing, but the potential for change is immense.
As John said, “The time has come for this drug funded primarily by the public to be returned to the public as a public good.”
The Impact
Early in the morning on Thursday, July 13, the Stop TB Partnership shared an update. It reads:
“Following lengthy negotiations, Johnson & Johnson has granted Stop TB Partnership’s Global Drug Facility’s licenses that enable Global Drug Facility (GDF) to tender, procure, and supply generic versions of SIRTURO (bedaquiline) for the majority of low-and middle-income countries, including countries where patents remain in effect.
GDF has shared with the TB community important updates on plans to launch a global, competitive tender for bedaquiline by end July 2023. All bedaquiline suppliers that meet GDF’s quality criteria are eligible to participate in the GDF bedaquiline tender and have been briefed on the tender goals, processes, and timelines.
This is an important agreement that will support our common goal of ending TB.”
Upon hearing this exciting news, John — and the Nerdfighters — rejoiced.
“Takes real guts to live up to your credo,” John tweeted upon first reacting to the news. “Generic bedaquiline WILL BE AVAILABLE in almost every country with a high tuberculosis burden.”
“I am so happy and grateful to the Stop TB Partnership, J&J, and especially the activists around the world who are standing up for TB patients. So much more work to do, but WHAT WONDERFUL NEWS TO WAKE UP TO.”
Nerdfighters chimed in on Twitter and Reddit.
“This is why I'm proud to be a Nerdfighter!” one Reddit user shared. “Way to go everyone!”
“You are an incredible inspiration for change and the power for good,” a Twitter user replied to John.
While this is a huge win — that comes at the efforts of thousands of activists like TB-survivors Phumeza Tisile and Nandita Venkatesan, and undoubted years of negotiations at the Stop TB Partnership — Green still seeks a few more actions from Johnson & Johnson. He outlines them in a tweet:
- Commit to the deal with the Global Drug Facility in perpetuity
- Provide the list of countries that can access bedaquiline through this deal
- Publicly acknowledge this amounts to a functional abandonment of secondary patents on bedaquiline in countries with high TB burden
Still, this progress is worth celebrating — and as John leads the way in anger and action, so too, does he in joy and hope.
“They did the right thing! And I'm sure it wasn't an easy decision for them,” John tweeted. “But they have chosen #PatientsNotPatents, and we have to celebrate when corporations make these choices — not least to encourage other corporations to do so!!!”
“We keep going from here,” he continued, in a response to the Stop TB Partnership, “together in solidarity with all those affected by TB.”
