We are Partners In Health clinicians and researchers with dozens of years of experience fighting tuberculosis (TB) globally. Joining us is TB advocate, bestselling author, and PIH trustee John Green! We’re here to answer any questions you may have...

My perception a few years ago was that TB was a Victorian-era disease that, while not totally eradicated, is now largely under control. I thought this way in spite of, or maybe because of, the annual testing I would receive at my previous job. It's only in the last few years, in no small part thanks to John Green's continuous efforts, that I realize that TB is still a problem, let alone the cause over a million deaths every year.

My question, then, is how do we bring TB back in to the public consciousness in developed countries where it's largely an afterthought, if it's a thought at all? And if we do manage to do that, what do we tell people when they inevitably ask why it's still such a problem when they can see that it's imminently treatable in their own countries? I ask, because to chalk it up to corporate greed or international indifference makes the problem seem insurmountable. How do we make them aware of the problem without making them dismiss it as impossible and therefore not worth acting on?

The thing is that because TB isn’t a public health concern in the western world, we don’t talk about it. What we do know is that TB doesn’t need a passport nor a visa to travel as an airborne disease. We can either contribute into ending TB in the developing world and I do think the media has a big role to play in all this. - Dr. Maxo Luma

Hello! I am a PCP in a developing country in South America, which is basically a synonym with Tb; despite that, I don't see as many tb patients in part because most of ours end up being extrapulmonary tb (right now in my very small practice we have around 50-ish tb patients and only 4 of those are actually pulm tb, and about half of those are actually multiresistant tb which feels astounding to me). A good amount of those patients get extremely late diagnoses because of the lack of respiratory symptoms and the clinical suspicion.

Of course my personal experience differs a lot from the epidemiology of it, but in your opinion could there be a way to increase suspicion and subsequently testing for extrapulmonary tb, especially in countries like mine where we already know tb is rampant?

Lastly, because my experience with new drugs like Bedaquiline is nonexistent (yay developing countries), how does it measure up against the already existent tb drugs when it comes to extrapulm tb?

There is better diagnosis that exist today that works well with extra-pulmonary TB, TB outside of the lungs. It is called Rapid Molecular Testing and is PCR-based – just like COVID-19 was diagnosed in the early parts of the epidemic. Most popular is the Xpert® machine which uses a cartridge. John Green and the Nerdfighteria have been successful at at advocating a lower price of the cartridge from Cephied, which now is just above 7 USD. And you can do this test directly on sputum, stool, needle aspiration from lymph nodes and much more!
Bedquiline is an excellent TB drugs and is now the mainstay of MDR-TB treatment as part of a multi-drug resistant regimen.
It is a huge concern that countries with insufficient resources do not have universal access to molecular testing and the latest drugs like bedaquiline. (Nerdfighteria also helped with lowering the price of bedaquiline).
IF you can, work with your ministry of health to get access to all the tools of TB! - Dr. Michael Rich

Why is TB killing so many people and what steps need to be taken to help stop this?

When all the tools in the toolbox are used to fight TB the incidence drops by about 10% per year. The simple answer to why it is still around is because we do not use all the tools in our disposal. New tools will decrease it even faster and alleviating poverty will result in even faster decrease.

The specifics in where we are failing are inadequate diagnosis, not treating drug resistance TB well, HIV co-infection with TB not being treated well, weak health systems, social stigma, and overall underfunding of TB programs. - Dr. Michael Rich

Has the Covid pandemic brought more attention to TB as another respiratory disease, or has it pushed TB funding & political will to the side?

The COVID-19 pandemic, and the responses to it, were devastating for TB. Health facilities were shuttered, treatments stocked out and TB was transmitted to more people. It was estimated that at least 5 years of progress were lost in the fight against TB and an additional 6.3 million cases of TB and an additional 1.4 million TB deaths would occur between 2020 and 2025. - Dr. Carole Mitnick

A decade ago I watched a documentary series about the dangers of multi drug resistant tuberculosis. My takeaway was that eventually we would be faced with a strain of TB that we didn’t have a drug we could use for treatment. Is that still true? Is there a strain that already has this characteristic and how prevalent is it?

such strains of "totally drug-resistant" TB do exist. Their eradication and, prevention of their proliferation, requires full access to the space, stuff, systems, support, and staff needed to ensure that people are able to get diagnosed quickly and complete treatment. It also requires continued investment in vaccines to prevent TB and new drugs to treat the new resistant strains that will inevitably emerge. - Dr. Carole Mitnick

What would be helpful for the general public to understand about TB? For those of us in a position to educate and influence people outside of medicine and biological sciences, what message would be useful to convey?

Adding on here: It is crucial in combatting TB to spread the word on how to STOP TB it. No matter what venue you have access to, it is likely you can dedicate some time to teaching on it, even if your audience is those outside of medicine and science. Teachers and even Youtubers (like John Green) can easily dedicate a session to TB, and it is both fascinating to learn about it’s history and very motivating to learn what can be done to stop TB.
The main messages are it's preventable and curable with proper medical care. We need to decrease stigma, promote early diagnosis, and strengthen health systems around the world to cure it. Putting resources into TB is a public good because it TB does not respect borders – it is a global problem. -Dr. Michael Rich

What does a best case scenario look like? Is eradication possible? Is no deaths possible? Are there plans for logistics in place to achieve this given the means?

Thank you for your work. It’s so inspiring. I want to see a world free of disease and suffering as much as possible and I’m thankful people and groups like y’all exist

Best case scenario is that we get serious about alleviating poverty and use all the tools to fight TB that are at our disposal – and develop new and better diagnosis and treatment.

We can then decrease the incidence of new cases by about 20% per year. This will cause the disease to slowly die out. Unfortunately, because about 1/3 of the world has TB infection (not active disease, they just have the TB bacteria dormant in their body, which can turn into active disease as the get older or their immune system is weakened), it will take many decades to illuminate it. However, if we can get it to 1 to 2 new cases per million population, TB is considered “eliminated” as a grave public health danger. Acknowledging we will have to continue with good TB preventive and treatment measures for a few generations to eliminate it completely. - Dr. Michael Rich

This one is for John Green and/or Dr. Mitnick:

If you could make one concrete policy change to prevent pharmasceutical companies from abusing patent law to extend their monopolies (e.g., patent evergreening via weak secondary patents on Bedaquiline), what would it be? Do you think modified version of patent monopolies are important to incentivize medical innovation - or would you like to get rid of patents on life-saving drugs entirely (at least to the extent they impact developing countries)?

Thank you.

2 things:

I would end secondary patents on changes that do NOT substantially improve or change the drug. The current patent system is gamed all the time because there is no standard for the effect of the patented attribute. As Christophe Perrin, our good friend at MSF Access Campaign put it, a pen manufacturer should not get a patent on a cap for a pen which that manufacturer knew would be necessary when they first made the pen

second: when manufacturers of health products receive public funding, they should be obligated to create favorable access conditions for the product that results from that funding. These conditions should be established at the time that taxpayer funds are first used to support the work of the commercial manufacturer - Dr. Carole Mitnick

All plans going well and all governments and businesses cooperating when could we hope to have eradicated TB by? Is it possible to eradicate TB like other historical diseases? What does the timeline for this look like? 🤞🤞🤞

And bonus question: best books/resources to read to learn more?

Best case scenario is that the world gets serious about alleviating poverty, strengthen health systems, has universal health care access and uses all the tools to fight TB that are at our disposal – and develop new and better diagnosis and treatment.
We can then decrease the incidence of new cases by about 20% per year. This will cause the disease to slowly die out, but it will take a long time. Unfortunately, about 1/3 of the world has TB infection (not active disease, they just have the TB bacteria dormant in their body, which can turn into active disease as the get older or their immune system is weakened). Therefore, it will take many decades to eliminate it. However, if we can get it to 1 to 2 new cases per year per million population, TB is considered “eliminated” as a grave public health danger. Acknowledging we will have to continue with good TB preventive and treatment measures for a few generations to eliminate it completely.
Bonus question on Good TB reads: I am going to refer you to John Green’s reading list on youtube!:https://www.youtube.com/watch?v=n2sEidFQMLw&t=19s
Stigmatized by Handaa Enkh-Amgalan: https://www.amazon.com/STIGMATIZED-Mo... (this may also be at your local bookstore, but isn't on bookshop)
Phantom Plague by Vidya Krishnan, which includes the story of Shreya Tripathi and so much fascinating history: https://bookshop.org/p/books/phantom-... -Dr. Michael Rich

Thank you everyone for asking your questions, we need to hope off but if you want to learn more about PIH's work with TB, sign up here: https://act.pih.org/tb-sign-up or check out: https://www.pih.org/programs/tuberculosis

For someone with “regular” TB (not multi drug resistant) how long do they have to take antibiotics? Do they pick up the medication once a week? month? A whole course at once? Does it need to be inpatient?

How often do people not follow through with treatment due to having trouble getting to a health care facility? Thanks to John Green I know the cost of diagnosis and treatment is a barrier. Are there other significant barriers?

(Hi, it's John, not an expert.)

1. The standard of care for drug sensitive TB is four months of treatment. This involves four different antibiotics, some of which are taken only for part of that four months. It is a challenging and rigorous treatment--as anyone who hasn't finished a five-day course of antibiotics for strep throat can tell you :). But it used to be much longer and more difficult. Folks in this thread are a big part of the reason we've gotten curative therapy down to four months.
2. Hopefully Dr. Rich and others can give you statistics on how frequently patients are unable to finish their treatment, but it is a significant challenge. You've identified two of the barriers in cost of diagnosis and treatment, but there are certainly others. There is a huge social stigma that accompanies TB in many communities, which is another barrier. Also, many people can't afford transportation to pick up their drugs or food to take with them. (I spoke to one woman in Sierra Leone recently who told me that when she has no food, she vomits up her medicine almost immediately, and she often has no food.) But comprehensive accompaniment models like those used by Partners in Health can overcome these barriers! So that means accompanying and supporting the patient along every step of their treatment journey and making sure they have what they need to be cured.

For someone with “regular” TB (not multi drug resistant) how long do they have to take antibiotics? Do they pick up the medication once a week? month? A whole course at once? Does it need to be inpatient?

How often do people not follow through with treatment due to having trouble getting to a health care facility? Thanks to John Green I know the cost of diagnosis and treatment is a barrier. Are there other significant barriers?

Regular TB can be treated in as little as 4 months. Treatment is daily. It can be taken outpatient. Some monitoring of treatment response and side effects is required.

How often patients have to go pick up their medication depends on the setting. Unfortunately, there is a long history in TB care of not trusting patients to take their treatment. So patients are often required to go somewhere to be "observed" taking their treatment. It's demeaning and disruptive. What patients need instead is support to help them overcome any barriers they may have to completing treatment. Having other diseases concurrently with TB can also be a challenge. In many places, if people have HIV and TB or diabetes and TB, they have to go to 2 different health facilities to get care for each. The cost of the Xpert cartridges is still much too high; as a result, many high-burden TB countries ration their use, resulting in tremendous delays in diagnosis and treatment and continued transmission of TB. We need further price reductions so that each test costs <$5. Treatment is generally free to the patient, but health budgets are constrained by external factors such as huge interest payments on foreign debt and resource extraction by other countries and private companies. - Dr. Carole Mitnick

Adding here: When a patient is well supported in TB treatment (incentives, enablers, psycho-emotional support, socio-economic support, assistance to travel to the clinic, home vistis and many more possibilities) only 1 to 3 % do not complete their treatment. When the patient is poorly supported, we have seen as high as 40% not completing treatment.- Dr. Michael Rich

How contagious is TB actually?

TB is an airborne infectious disease. It is transmitted by having close, extended contact with someone with TB. It is less transmissible than COVID and the flu - Dr. Carole Mitnick

TB is fully curable. Its cure requires the delivery of treatments that have been known for nearly 80 years. Since TB disproportionately affects people who have other diseases or are malnourished, marginalized, and impoverished, supportive services must complement the anti-TB treatment - Dr. Carole Mitnick

Is anything that's currently happening with PEPFAR and Foreign Assistance potentially going to have an impact on the fight against TB? If so, how can we help ensure things aren't negatively affected?

Another great question! If PEPFAR is discontinued, as seems very likely, TB will become an even greater threat. If people living with HIV are unable to receive antiretroviral therapy, they become much more vulnerable to developing TB disease and dying from TB. Please write to your senators and representatives to let them know that PEPFAR is lifesaving. Preventing HIV transmission and forestalling the development of full-blown AIDS make great economic sense. Similarly, investing in TB treatment and research offers a huge return on investment: $46 return for every $1 spent. - Dr. Carole Mitnick

And, also ask your representative and senator to support the END-TB Now Act: https://act.pih.org/end-tb-now-act-2023

Is Partners In Health cooperating with other organizations in Asia to help people get access to TB and spread information? Is there a list of organizations we could volunteer in?

PIH works in Kazakhstan in Central Asia. PIH also works with another amazing NGO that works in Asia, Interactive Research and Development or IRD (https://ird.global). Doctors Without Borders/Médecins Sans Frontières also works in Asia. There are a number of patient/activist organizations that do important work in Asia. A great example is the Global Coalition of TB Advocates. You can find more organizations working in specific countries and other great resources about TB on the website of the Stop TB Partnership. https://www.stoptb.org - Dr. Carole Mitnick

Why doesn't a large National or multinational organization, like the WHO, just go all in on TB eradication/massive reduction in cases similar to what we did with smallpox? It seems like this would be the obvious next big goal, unless I'm missing something.

That would have been great. However, the eradication of TB is tightly correlated with the elimination of poverty for that TB knocks most of the time on the doors of the most impoverished communities/nations.

That would require first of all, to make primary health care available in those countries that are the most affected by TB. It is beyond a massive vaccination campaign. this would also require a reduction in the cost of the drugs, tests, and innovations that are proven to be the most effective in the treatment of TB. For example, we have a great opportunity with the 1/4/6 innovation. Now the question is. Do we want to make this investment? is it in our backyard enough to say yes to this?- Dr. Maxo Luma

What are the biggest institutional barriers you're facing in the towns and cities you're working in? Or is all local government on board and fully co-operative, and it's purely a matter of better resourcing (whether that be money or better data)?

From my experience, one of the biggest barriers that countries (the most impoverished) face is the scarcity of resources for that they never have the required funding to deliver on such big and bold dream of ending TB. The small envelope countries often receive from the Global Fund isn't even enough to cover drugs should they want to address the overall burden of TB. We often make bold promises without making the necessary investment in alignment with our big dream. As a result, we keep pushing the dates from, 2000 to 2015 and now 2030. God knows what the next will be. We are always too late. - Dr. Maxo Luma

What are the next steps with the endTB clinical trial & observational study? Do you anticipate that the findings from those studies will be adopted by countries? Do you think further advocacy is needed to accelerate the adoption of best practices?

The endTB clinical trial was conducted with generous support from Unitaid. It was implemented by a consortium led by PIH, MSF, and IRD in partnership with ministries of health and other stakeholders in Georgia, India, Kazakhstan, Lesotho, Pakistan, Peru, and South Africa. We are thrilled to be able to report results on the five all-oral, shortened regimens at the conference of the International Union Against TB and Lung Disease in Paris on November 15. With timely, rigorous review of the results by a World Health Organization Guideline Development Group, the results could inform treatment of drug-resistant TB in adults and in children. - Dr. Carole Mitnick

What are the biggest obstacles you forsee in achieving your goal from an International Relations perspective? I am hoping to get my Masters Degree in IR soon and I would like to use it to aid this effort but I'm not sure where my efforts can be best utilized.

It's so great to have interest from folks coming from so many different angles! thank you all for your engagement. I had hoped to study international relations too. Then, infectious disease epidemiology captured my attention. So, look out. There's so much to be done in IR too. I would highlight trade policies that undermine the most vulnerable: the World Trade Organization is notorious for favoring policies, regulations, and countries that prioritize the profits of multinational companies over the lives of people. Working to find alternatives that tip the balance in favor of alleviating human suffering will be key. Check out the work of Tahir Amin and I-MAK (https://www.i-mak.org/people/tahir-amin/) for one possible angle. - Dr. Carole Mitnick

Hello PIH! I know that TB used to be known as consumption, due to how people with TB would appear emaciated. My question is, what causes people with TB to lose so much weight, even when the disease is in their lungs?

When people have TB, the bacteria attack the immunity system ( another word basically for the protein in your body) the longer it takes for patients to access treatment, the more the more affected is the immunity system and therefore, more weight the patient would loose. also, it is worth mentioning that because TB knocks on the doors of the poorest the most, we could argue that the nutritional status of those affected was not ideal in first place. However, we can change the narrative by building systems that can catch TB on time and initiate people on treatment in timely fashion, while addressing the social determinants of TB in those who are affected by it the most. finally, it is not wrong to say that food is also medicine by making sure patients get access to food just as the TB drugs if not even more. - Dr. Maxo Luma