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Talking Tuberculosis, GeneXpert, J&J, and more with MY HEROES

2023-09-14 · collab / interview · John, Nandita Venkatesan, Phumeza Tisile, Animesh Sinha, Carole Mitnick · 59:36 · watch on YouTube

Topic: Global development · mode: Q&A & conversation · tags: guest or collab, heavy topic, civic or action cta, timely hook

In a livestream panel John talks with TB survivors Nandita Venkatesan and Phumeza Tisile, MSF's Dr. Animesh Sinha and Dr. Carole Mitnick about drug-resistant TB, hearing loss from injectables, GeneXpert diagnostics, bedaquiline and stigma, and asks viewers to keep pressing Danaher and Cepheid.

What is said

The parts of the video and what is said in each (★ — how much it matters to the video).

00:00:00 — Livestream opening: John introduces his four heroes and Nandita and Phumeza's patent challenge in India

  • ★★ John says the panel feels to him like his daughter interviewing Olivia Rodrigo or Taylor Swift: four of his heroes, Dr. Animesh Sinha, Dr. Carole Mitnick, Nandita and Phumeza. — 00:00:42 · Alice Green
  • ★★★ John says TB survivors Nandita and Phumeza joined MSF to sue the Indian government so India would not honor J&J's secondary bedaquiline patent; they won, so generics were ready the day the patent expired. — 00:01:11

00:02:12 — Nandita's story: intestinal TB, relapse, surgeries, hearing loss from an injectable, the contrast with COVID; John on decades without new TB drugs

  • ★★★ Nandita Venkatesan: Nandita says she is a two-time survivor of intestinal (extrapulmonary) TB, first diagnosed in 2007 at 17 as she began university, and cured after about 15 months of treatment. — 00:02:12
  • ★★★ Nandita Venkatesan: Nandita says she relapsed in 2013 after her master's; the drugs did not work well, the disease turned severe, and at 24 she had six abdominal surgeries and about 90 days in hospital. — 00:03:29
  • ★★★ Nandita Venkatesan: Nandita says around November 2013 an injectable drug in her treatment (name unclear) took her hearing completely: she fell asleep at 2 p.m. and woke at 2:15 unable to hear. — 00:04:36
  • ★★ Nandita Venkatesan: Nandita says learning that a medicine, not the bacteria she was fighting, had taken her hearing made it one of the most horrifying days of her life. — 00:06:04
  • ★★ Nandita Venkatesan: Nandita hopes TB treatment becomes a cakewalk: take the medicine and be cured, with no such horrifying experiences or existential questions. — 00:06:33 · tuberculosis
  • ★★ John notes Nandita and Phumeza have cochlear implants, but many who lose hearing to the injectables cannot afford them, so their hearing loss is permanent and total. — 00:07:01
  • ★★★ John says one reason they fought for bedaquiline access is that it can replace the injectables, is far safer, and causes no hearing loss or the injectables' other toxicities. — 00:07:31
  • ★★ Nandita Venkatesan: Nandita agrees but adds that no drug is free of side effects (bedaquiline needs care about cardiotoxicity), though researchers regard it as safe. — 00:07:31
  • ★★★ Nandita Venkatesan: Nandita says drugs that destroy ears or kidneys should no longer exist; her hearing loss could have been avoided with better diagnostics or medicines. — 00:08:48
  • ★★ Nandita Venkatesan: Nandita says that during COVID, studying at Oxford on a full scholarship, she watched drugs and vaccines arrive weekly while people lamented an isolation she had already lived through. — 00:09:46 · COVID-19 pandemic
  • ★★★ John says eight classes of TB drugs were developed between 1940 and 1965, then none between 1965 and 2013, which is why we are in this mess. — 00:10:16 · tuberculosis

00:10:40 — Phumeza's story: South Africa's J&J investigation, missed diagnosis, XDR-TB, deafness and cure; John on GeneXpert and access

  • ★★★ John says the 40 years in which the global health community ignored TB were catastrophic, a catastrophe real people feel in their real lives. — 00:10:40 · global health, tuberculosis
  • ★★★ John reports that today South Africa's government announced it will investigate J&J's attempts to keep enforcing its secondary bedaquiline patents there and keep prices high. — 00:10:40
  • ★★ Phumeza Tisile: Phumeza welcomes the news: South Africa was the only country getting bedaquiline from J&J at a much higher price than any other, which angered activists. — 00:11:58
  • ★★★ Phumeza Tisile: Phumeza says at 19, a first-year student, she was tired and breathless; a private doctor sent her to a Cape Town public clinic, where her TB test came back negative after weeks. — 00:13:20
  • ★★★ Phumeza Tisile: Phumeza says, down to 32 kg, she was diagnosed by chest X-ray, got worse on first-line drugs, then was found to have MDR-TB and hospitalized at Brooklyn Chest Hospital on many pills and a painful daily injection. — 00:13:58
  • ★★★ Phumeza Tisile: Phumeza says she woke up deaf; staff wrote 'deaf' in red capitals on her folder and explained in writing that nothing could be done. — 00:15:04
  • ★★★ Phumeza Tisile: Phumeza says after lung surgery her drugs failed and she had full-blown XDR-TB with a 20% chance of survival; an MSF doctor offered a new drug, and she was cured after three years and eight months. — 00:17:18
  • ★★ Phumeza Tisile: Phumeza says she was left deaf and could not return to university; she was lucky to get cochlear implants, which cost 40,000 US dollars. — 00:17:18
  • ★★★ Phumeza Tisile: Phumeza wishes today's Xpert test had existed: knowing she had XDR-TB from the start would have prevented her hearing loss, daily vomiting and years of suffering. — 00:17:54
  • ★★ John says he read that Phumeza took between 20,000 and 30,000 pills during her treatment. — 00:18:24
  • ★★★ John says smear microscopy misses about half of TB cases because the 130-year-old test isn't very good, which is likely why Phumeza first tested negative. — 00:18:46
  • ★★ John says GeneXpert tests are amazing but overcharging for them causes real harm, which is why the community fights for wider access to them. — 00:18:46
  • ★★★ Phumeza Tisile: Phumeza says it makes no sense to create a solution and then keep it out of reach of the people who need it most, as with bedaquiline and the Xpert test. — 00:19:35
  • ★★★ John says the core disagreement with Danaher and Cepheid is that a tool the neediest can't use is not useful; citing Dr. Peter Mugyenyi on HIV drugs, he says medicine fails unless it both invents and distributes treatments. — 00:20:05 · also in: EVERYTHING IS TUBERCULOSIS

00:20:42 — Dr. Sinha on TB and poverty, microscopy vs GeneXpert, cost as the barrier, and skin tests

  • ★★★ Animesh Sinha: Dr. Sinha says TB has classically gone with poverty: incidence rises after wars and in poor places and falls as living conditions, nutrition and immunity improve, as in the US. — 00:21:03 · tuberculosis, United States
  • ★★★ Animesh Sinha: Dr. Sinha says most TB cases are in low and middle income countries; India accounts for around 3 million of the around 10 million cases each year. — 00:21:52
  • ★★★ Animesh Sinha: Dr. Sinha says poverty will take time to improve, but people suffering today do not deserve to die or go undiagnosed; they must be diagnosed and treated correctly now. — 00:22:13
  • ★★★ Animesh Sinha: Dr. Sinha says most people still get microscopy, which misses half of people with TB and cannot tell drug-resistant from drug-sensitive TB, so wrong first-line treatment breeds more resistance. — 00:23:11
  • ★★★ Animesh Sinha: Dr. Sinha says GeneXpert shows within two hours whether you have TB and whether it is drug-resistant, while culture-based resistance testing takes months, often too late. — 00:24:27
  • ★★ John says Cepheid and its gigantic owner Danaher have never spoken publicly about the issue, which he finds infuriating. — 00:24:57
  • ★★★ Animesh Sinha: Dr. Sinha rejects the claim that cost is not the main barrier: otherwise countries would roll the test out widely; low and middle income countries like India cannot afford enough tests at current cartridge prices. — 00:25:35
  • ★★ John says GeneXpert tests don't have to be expensive: their cost-effectiveness is a moving target set by how much Danaher decides to charge. — 00:27:22
  • ★★ Animesh Sinha: Answering a chat question, Dr. Sinha says skin tests only show past exposure to TB bacteria, not active disease, so GeneXpert, not skin testing, is the test of choice for most people with TB. — 00:27:22
  • ★★ John says so many people have been exposed to TB that something like two and a half or three billion might test positive on a skin test; Dr. Sinha agrees. (hedged) — 00:28:09

00:28:48 — Dr. Mitnick on bedaquiline's transformation of drug-resistant TB care and what companies gain from access; John on executives and profit

  • ★★ John says Phumeza and Nandita were just named to the Time 100 Next, though he argues they belong on the main Time 100 list of the most influential people. — 00:28:48
  • ★★★ Carole Mitnick: Dr. Mitnick says bedaquiline was part of the regimen that finally cured Phumeza, as John saw with his friend Henry; many call it a Lazarus effect, like early antiretroviral therapy for HIV. — 00:30:05
  • ★★★ Carole Mitnick: Dr. Mitnick says bedaquiline is now the linchpin of every multidrug-resistant TB regimen, for adults, children, pregnant people and people with HIV. — 00:30:35
  • ★★★ Carole Mitnick: Dr. Mitnick says about 500,000 people newly get drug-resistant TB each year, only around 200,000 or fewer are treated, and a backlog of one to one and a half million untreated people accumulates. — 00:31:02
  • ★★ Carole Mitnick: Dr. Mitnick likens bedaquiline to pyrazinamide and rifampin in the 1970s, which cut ordinary TB treatment from 18 to six months; now more people can be treated for less money and toxicity. — 00:31:46
  • ★★ John says Dr. Mitnick helped prove in Peru in the early 1990s that MDR-TB could be treated in poor countries; she described the earlier WHO approach as leaving people by the road to die. — 00:32:16
  • ★★ John says it is important to understand that progress against drug-resistant TB is possible and has happened, but it is harder than it needs to be. — 00:32:54
  • ★★★ John says no child dreams of being a pharma executive who limits access; most such people want to make the world better and need polite but insistent reminders that this doesn't mean maximizing short-term profit. — 00:33:48
  • ★★ John argues Danaher would make a lot of money selling 45 million TB tests to India every year, which it can only do by lowering its price. — 00:33:48
  • ★★★ Carole Mitnick: Dr. Mitnick tells companies that serving those most in need pays: good PR, motivated employees and retention, and name recognition in emerging markets, as bedaquiline brings J&J; they need not rely on unlimited profits. — 00:34:44
  • ★★ Carole Mitnick: Dr. Mitnick says people go into pharma and biotech for the thrill of discovery that helps people, not to restrict access, so campaigns like this must be demoralizing for them. — 00:35:14
  • ★★★ Carole Mitnick: Dr. Mitnick says estimated public, largely US, tax-funded investment in bedaquiline was 1.6 to 5 times J&J's own, including a phase three trial, and J&J also got an FDA accelerated-review voucher. — 00:36:02

00:37:00 — John asks viewers to keep contacting Danaher and Cepheid; employees' internal pressure

  • ★★★ John asks viewers inspired by the conversation to contact Danaher, tag it on social media and phone it, politely, since whoever answers is not the decision-maker. — 00:37:33
  • ★★ John says Danaher shut down its public-facing phone line yesterday and it is still down, though another number takes messages. — 00:37:33
  • ★★★ John says this is not a two-day campaign: MSF and the panelists have worked on it for years, and Danaher must know they are paying attention and it won't blow over. — 00:38:02
  • ★★ John says the pressure works: many Danaher and Cepheid employees message him that they dislike it and didn't enter the business to deny patients access; internal pressure is mounting. — 00:38:31

00:39:11 — Viewer questions: public funding of GeneXpert, cartridge costs, John's $12,000 pill, the investor list

  • ★★ John says they have heard nothing from Danaher and Cepheid, their usual strategy, but will eventually because they will keep escalating. — 00:39:11
  • ★★ Asked by a viewer how much of GeneXpert's development was publicly funded, John says it was $250 million but he doesn't know what share of the total that was. — 00:39:57
  • ★★ Carole Mitnick: Dr. Mitnick says companies are totally opaque about cartridge and development costs; an MSF-commissioned study put the cost of a cartridge at $3.50 to $4. — 00:40:54
  • ★★ Animesh Sinha: Dr. Sinha adds that Cepheid received around $250 million in public funding to develop the Xpert technology. — 00:40:54
  • ★★ John says much of that funding came from the NIH and American taxpayers, and some from taxpayers outside the US. — 00:41:20 · United States
  • ★★ John recalls an infection behind his eye that needed a $12,000-a-pill antibiotic; his doctor said he was paying twice, since the public also funded its development, which John agrees with. — 00:41:20
  • ★★ John says 1,148 people are watching; Nerdfighteria has researched a list of Danaher's investors and is contacting some of them, with more on its Discord at nerdfighteria.com. — 00:41:57 · Nerdfighteria, nerdfighters.com

00:42:26 — Friends lost and TB stigma: Phumeza, Nandita, and a sanatorium memoir John read

  • ★★★ Phumeza Tisile: Phumeza says in almost a year in hospital she lost people close to her who could have been saved with better drugs. — 00:43:27
  • ★★★ Phumeza Tisile: Phumeza says TB stigma is still huge: media tie it to death, people hide it and few speak out, so stigma must be broken down for people to seek care. — 00:43:27
  • ★★ Phumeza Tisile: Phumeza tells J&J and Cepheid that with so many gaps in TB care, survivors cannot also be fighting over drugs and diagnostics, and the companies are making it very difficult. — 00:44:25
  • ★★ Nandita Venkatesan: Nandita hopes that as more survivors share their experiences, others will find the courage to come out and someone to look up to during treatment. — 00:45:07
  • ★★★ Nandita Venkatesan: Nandita says though her intestinal TB was not contagious she was told to keep quiet, so she told people she had an intestinal infection and never named the disease. — 00:46:19
  • ★★★ Nandita Venkatesan: Nandita says people fear TB as contagious without knowing that patients adhering to treatment become non-infectious within weeks or months and can date and live normally; such facts should be widely shared. — 00:46:48 · tuberculosis
  • ★★ John recalls a memoir by a woman who had TB as a child in mid-20th-century US sanatoriums until streptomycin saved her; going home, she had forgotten being touched with love. — 00:48:37 · United States
  • ★★★ John says such isolation is heartbreaking and unnecessary, since people a few weeks into treatment are no longer infectious and pose less threat than a crowded bus. — 00:49:06

00:49:39 — Closing remarks: Mitnick on stigma and profit limits, Sinha on $5 cartridges, Phumeza on universal testing, Nandita on the patent opposition, John on innovation; thanks

  • ★ John says he must walk upstairs to plug in his computer, having misplanned his battery, joking that this is a super professional livestream. (playful) — 00:49:39
  • ★★★ Carole Mitnick: Dr. Mitnick says asking sick people to disclose burdens them and does not destigmatize; rapid diagnosis and treatment, which make people non-infectious almost at once, do. — 00:50:44

  • ★★★ Carole Mitnick: Dr. Mitnick says unlimited profiteering kills: profits on life-saving treatment need limits, though profit can still drive innovation. — 00:51:39

    “unlimited profiteering kills”

  • ★★ Carole Mitnick: Dr. Mitnick calls for an end to double dipping: taking public funds to develop something and then profiting from it endlessly. — 00:52:05

  • ★★★ Animesh Sinha: Dr. Sinha says Cepheid and Danaher should drop the GeneXpert cartridge price to five dollars for all diseases, including TB, to find missing cases and treat them early. — 00:52:28
  • ★★★ Phumeza Tisile: Phumeza calls for universal TB testing (yearly for people with HIV, contacts and the previously treated) and services near people's homes, since stigma drives people to distant clinics. — 00:53:46
  • ★★★ Nandita Venkatesan: Nandita says the patent opposition they won faced skeptics questioning their motives, since both had finished treatment, and asking whether they were against innovation or understood the economics. — 00:54:31
  • ★★★ Nandita Venkatesan: Nandita says she is not against innovation and, highly educated, understands the economics; she wants innovation to reach people, since science must benefit everyone. — 00:55:54
  • ★★★ John argues Nandita is strongly pro-innovation, because innovation also means getting tests and drugs produced at scale and to the places they're needed. — 00:56:23
  • ★★ John says Alexander Fleming's 1928 discovery of penicillin was not the big innovation; that came in the early 1940s, when scientists working together learned to make it at scale. — 00:56:52
  • ★★ John says Nandita and Phumeza will keep leading on stigma and access, starting in a few days at the UN General Assembly's high-level meeting on tuberculosis. — 00:57:22
  • ★★ John thanks the audience, including a viewer who called Cepheid and reached a person within two minutes, for keeping pressure on Danaher and monitoring J&J on bedaquiline. — 00:58:13

00:58:42 — John on doing things together and on hope; sign-off

  • ★★★ John says what they are accomplishing is another reminder that human beings do very little alone: almost everything we do, we do together. — 00:58:42 · collective action

  • ★★★ John grants that despair is easy before overwhelming problems but says hope is the correct response to the miracle of human consciousness; together we can make a better world. — 00:58:42 · hope

    “hope is the correct response to the miracle of human consciousness”

In the description and comments

  • ★★★ The description asks viewers to email Danaher's investor relations, call Cepheid, use templates at tbfighters.org and swarm both on social media with #peopleoverprofits. — video description
  • ★★ The description thanks Doctors Without Borders and Partners In Health for making the event possible. — video description · Partners In Health

Threads in this video

Where the stories that moved here went next

Mentioned

Central: Animesh Sinha · Bedaquiline · Carole Mitnick · Cepheid · Danaher Corporation · GeneXpert · multidrug-resistant tuberculosis · Nandita Venkatesan · Phumeza Tisile · social stigma · tuberculosis

Also: People: Alexander Fleming · Alice Green · Henry Reider · Olivia Rodrigo · Peter Mugyenyi · Taylor Swift

Projects: nerdfighters.com

Works: Time 100 Next

Organizations: Brooklyn Chest Hospital · Discord · Food and Drug Administration · Government of India · Johnson & Johnson · Médecins Sans Frontières · National Institutes of Health · United Nations General Assembly · University of Oxford · World Health Organization

Concepts: Antibiotic · antiretroviral therapy · cochlear implant · collective action · evergreening · extensively drug-resistant tuberculosis · extrapulmonary tuberculosis · generic drug · global health · HIV/AIDS · hope · Mantoux test · Microscope · patent · penicillin · pharmaceutical industry · pyrazinamide · rifampicin · social determinants of health · streptomycin

Places: Cape Town · India · Peru · South Africa · United States

Events: COVID-19 pandemic · UN High-Level Meeting on Tuberculosis

Only in the description or credits: Partners In Health · TBFighters

Also centred on Bedaquiline: Barely Contained Rage: An Open Letter to Johnson & Johnson · The Good News Video · Henry · An Incredible Update

Also centred on Cepheid: Barely Contained Rage: An Open Letter to Danaher and Cepheid · So, um.... GOOD NEWS?!?!?!

Also centred on Danaher Corporation: Barely Contained Rage: An Open Letter to Danaher and Cepheid · So, um.... GOOD NEWS?!?!?! · End of a Rough Year · I Own Danaher · Is It 2010? IT'S A PARTS VIDEO · I Don't Want them to Get Away With It…

Also centred on GeneXpert: Barely Contained Rage: An Open Letter to Danaher and Cepheid · I Don't Want them to Get Away With It…

Also centred on multidrug-resistant tuberculosis: Barely Contained Rage: An Open Letter to Johnson & Johnson · MASSIVE Tuberculosis News · End of a Rough Year · ITS ALL HAPPENING · Real Reasons for Hope

Also centred on social stigma: 'end the stigma' · My Physicalmental Illness · TAKE IT UP A NOTCH · Why Can't I Take My Meds? · I've Been Pooping All Wrong

Later videos replying to this one

  • 2023-09-19 · So, um.... GOOD NEWS?!?!?! (John) — continues — “Like last week on Vlogbrothers, we hosted a livestream that included one of my heroes, the TB survivor and activist Fumeza Tisile” (00:01:31)

Part of an exchange of 3 videos, 2023-09-12 – 2023-09-19.