Interview with Shiva Shrestha – RESULTS Australia’s Global Health Campaign Manager

Shiva Shestra

 

Did you miss the Digital Town Hall on the UN HLM onTB last night?

We had our new Communications intern Pascale Hunt sit down with Shiva Shestra, our Global Health Campaign Manager to discuss why TB and the TB UN-HLM are so important.

Pascale: Can you talk a little about TB and why it is such an important global health emergency?

Shiva: To start with you know, TB is the largest infectious disease killer in the world. It kills more people than HIV AIDS – about 1.7 million people every year. Now the question is – despite so many people dying because of TB, why doesn’t it receive the attention it deserves?

Since the World Health Organization declared TB an emergency in 1993, about 15 million people have already died as a result of the disease. So, despite the WHO saying that TB is a global public health emergency, we are still way, way behind in addressing the problem of TB.

Pascale: Why is that?

Shiva: There are several challenges – one is that it has not received the attention it deserves. It kills more people than HIV, it has killed more people than Ebola – Ebola killed about 12,000 people. With TB, one person dies every 18 seconds. So by the time we finish this conversation, you can do the math, how many people will have died by then?I think, people who work in public health like me, and others who work in the TB community, have in some ways failed to bring that kind of limelight, to sell the agenda, to sell the issue of TB to the policymakers and to the government and to the important decision makers, including the heads of state. You would expect that if there are so many people dying from TB, everybody should be aware of it and be worried about it, and be doing something about it urgently.

Right now, the problem with TB is that we don’t have the right kind of tools required to address the problem. So for example, the World Health Organization, and the Stop TB Partnership has set a target to end TB by 2035. But at the current rate of progress, in terms of the number of people we are diagnosing and treating both for TB and for MDR-TB, the target of ending TB by 2035 is not going to happen. It will take at least 160 years to end TB. And by that time, you won’t be here, I won’t be here, I don’t think anybody who is on the planet right now will be here to see that, and that is not acceptable. So we need to do something about it, we need to change.

When I say the tools that we have are not adequate – I mean the diagnostic systems, the methods, the tools for treatment we use are outdated. You know, we still use the microscopic method of seeing the bacteria under a microscope to detect TB, which is probably more than 100 years old. So we are still relying on old diagnostic tools for TB and the only new machine we have – the genexpert that is used to diagnose MDR-TB. It’s expensive, it requires electricity, it requires air conditioning, so in other words – where we do have  a new tool, many countries are still not able to afford it or they don’t have the infrastructure to use the machine such as reliable power.

In terms of treatment, the drugs we have – that most people have access to-  are again drugs that are probably 50-60 years old. If you look at HIV – when that was in the limelight, there were about 20 new drugs in 20 years that came out. With TB, we are still relying on these drugs from 50 years back, and we just have not gotten new, better drugs to fight TB.

MDR-TB is basically a drug resistant form of TB. So we need different drugs to treat this, because the ones we currently use to treat MDR-TB are toxic and have a lot of side effects. If you were on our Digital Town Hall you have heard Nandita’s story about that. She has completely lost her hearing because of the drugs – not because of the TB, but because of the drugs. And the duration for such treatment is about 18 to 24 months. That means you’re taking 14-16 pills every day, for two years. Imagine that. And those drugs can lead to deafness, sucidal tendency and a lot of other side-effects. It sounds horrible, right? So we need better drugs, we need to reduce the duration of treatment. We can’t even take 7 days of antibiotics properly and we expect people, often living in poverty, to take 14-16 pills every day for two years?

We also need quicker diagnostic tools. If you look at diabetes, you just prick your finger and check the blood sugar level and you know how you are doing. You don’t have to go through a long process to find out. So we need better drugs and quicker diagnostic tools. And the most important thing we need is vaccines. We don’t have a TB vaccine. The old BCG vaccine only protects children, and TB of the brain, which is called TB meningitis. We need a vaccine if we really want to prevent the disease, right? Without a vaccine – this war cannot be fought, we cannot win this war.

So these are the three main things that we need. In addition, we need better health systems. So if these are the challenges, the solutions are having better drugs, shorter, more effective non-toxic drugs, a quick point of test diagnosis, and a vaccine. But right now, at this rate, this looks like a distant dream. Because we don’t have the money to do this, the investment that is needed. We need about USD$13 billion every year for the next 5 years to achieve this – just to implement the TB program properly. The funding gap for research and development in TB is about USD$1.3 billion every year. Without that money, we can’t have those things. We need investment now. That’s where the UN High Level Meeting comes into play.

Pascale: Can you explain the significance of the UN HLM on TB?

Shiva: The UN High-Level Meeting is probably the highest-level political platform that we have ever had and could ever get for TB. It is the place where the UN heads of states come together during the UN General Assembly, to talk about TB and plan specific actions to address TB. In the past there have only been about 4 such meetings. There was one for HIV, one for Ebola, antimircobial resistance, and one for non communicable disease – but for TB, this is the first time, and it may be the last. This is an historic opportunity for all the heads of state to come together, recognize the TB problem, recognize that we need solutions, and then not just sign the declaration – but say that my country is going to do this, this, and this to address TB globally.

Pascale: Why is it so important that the Prime Minister attends the meeting?

Shiva: The reason TB requires such priority from the PM is because it is a problem that can’t be addressed by just one department or Minister, like the Minister for Health, because TB is not just a health problem. It’s a social problem, right? It’s linked to poverty – it’s linked to living conditions, hygiene, it’s linked to lifestyle, immunity – which is linked to nutrition. So it’s an issue that needs attention from different departments. For example, TB is high in prison populations. In Australia, it is relatively high in Aboriginal communities, and among people who are born overseas. So it needs attention from many departments. We need the head of state, the PM, to address these.

Pascale: Can you talk about more about the relationship between TB and the cycle of poverty?

Shiva: You know, TB is both the cause and consequence of poverty. If you’re poor, if you don’t get good food and have good nutrition, you have a higher chance of contracting TB. If you are in a high burden country, and get infected with latent TB, and your immunity is down, this can develop into full on TB. If you’re poor, you have TB, and you take treatment but if your nutrition is not good, it’s not effective. We need to remember not every country has a good health system like Australia where things are covered by Medicare – there are countries where people have to spend from their pocket to get diagnosed, to get treated, even if TB drugs are free in most countries, many patients go into the private system, and private doctors don’t give medicines for free. You will have to leave work and you’ll lose your pay. You’ll not be able to work for a certain period of time so you do not have an income . You’ll have to spend a certain amount of money for transportation. Imagine I’m in a family where I’m a breadwinner, and if I have TB, there’s nobody earning. How will a family survive? This will lead to poverty.

Pascale: Does gender inequality play a role in the TB epidemic?

Shiva: TB and gender is something that is not often talked about. The gender angle is very important. The fact is that we don’t have good data for me to even confidently give you statistics. In terms of services and investment to address TB in women, we don’t have this, and very little is being done. One billion women and girls are infected by TB.  In terms of numbers, the data will show that more men are infected with TB than women. But there was a study carried out in Vietnam that showed that women delay their diagnosis, delay going to the doctor by almost 2 weeks. It doesn’t mean that there are less women affected by TB, I would rather think that maybe there are more TB cases in women and we don’t know about them because of delayed diagnosis. There is stigma and discrimination, especially towards women with TB. I have met women who are scared of even saying that they have had or have TB because they fear that they will not get married.There are social aspects to TB in women, and because mothers are often the ones who take care of the children – if a woman has the disease and its infectious, there is a high chance it will be passed on to the child. The fact is that we don’t have good data, we need to do research on these things to say here, this is where we need attention. We need to design our program, not just in terms of services, but in terms of budget, you know, addressing the problem in such a way that it is much easier for women to have the systems in place where it is easier for them to get diagnosed, get treated, and have a support system in place, because it’s a matter of equity. Having everybody that has TB have access to the services they need.

Pascale: What are some of the economic and social impacts of the TB epidemic on a community and country level?

Shiva: TB is a huge issue, not just for individuals, but for communities and for countries. In terms of investment, every dollar that is invested in TB actually gives a return of $43. So if a government invests in TB, they actually get a return of 43 times more – no other disease receives so much output. So it’s a fantastic investment. Having said that, if we do not do what is supposed to be done for this problem, the economic cost and social cost is going to be huge for a country. For example, between 2000 and 2015, there were about 35 million deaths due to TB. Economists have done an estimation to understand the cost of that – it has cost the world economy about $616 billion dollars. That’s about the economy of Norway in 2016. So with estimates that between 2015 and 2030 another 28 million people dying, that is going to cost another $984 billion.Again equivalent to the loss of an economy the size of the Netherlands in 2016

That’s the economic perspective of course, but health is a fundamental human right for everybody. Health is a right, as a citizen of a country; you need to have access to health services regardless of sex, race, or gender, without any discrimination. But with TB, if you’re a woman for example, if you’re a refugee, if you’re an immigrant you may face discrimination. So you know, the human rights angle of TB is also important to keep an eye on. A higher rate of TB in communities is related to overall living conditions, access to services, health, immunity, everything – so overall, TB is not just limited to one person or family, but to the community, society, the country and the world.

There is no country that doesn’t have TB. There are some countries that have higher rates of TB, but TB is a big health security issue for everyone. If you look at how everybody was scared of Ebola – that it would spread to other countries – TB has that  same potential because it is both infectious and airborne, people can get it from travelling from one place to another. In our region, the Asia Pacific, where about 60% of TB cases are, these are our neighbours. In other words, if you’re neighbours are infected with TB, it is not ethically right for a country to say that “it’s not our problem”. We have to be generous. It’s a health security risk for all of us and if we want to end TB we have to come together collectively to ensure that we have the investments everybody needs

Pascale: How do you think we can more effectively communicate to our politicians to take action on closing this gap?

Shiva: How to communicate this message? First of all, we need to make TB, you know, in a way more sexy.We have to make people aware that TB is still a problem because if you speak to people, they will say they didn’t know TB was still an issue, they thought it was a thing of the past, o we need to create the awareness among people in the community. At the same time we need to reach out to people that make the decisions – prime ministers and presidents, and that’s where organizations like RESULTS come into play. That’s where parliamentarians like the TB Caucus come into play. That’s where volunteer engagement is important because volunteers are the passionate people who will represent the community and go to the politicians and say that we are concerned about this, you need to do something about it. Without that ask there is every likelihood they won’t even know it is an issue. At RESULTS  deeply care about it, and we think you should too.

Pascale: Have there been any recent developments in ending TB that have given you hope?

Shiva: There have been some positive developments, in terms of new, cleaner, better drugs. That is encouraging. There are some drugs in the pipeline that may come out and that is encouraging. However for a new drug to be developed, to get FDA approval, and for the cost of the drug to be affordable, that takes a lot of time and effort. Clinical trials are needed. It’s promising that we’re seeing movement but it needs to get faster. We need more drugs in the pipeline, we need to invest more into TB vaccination. We need to invest more in basic science and research. I wouldn’t be too hopeful just looking at the two drugs we have right now, because they don’t address the entire problem. They’re at least going to stop people from dying, that is a good thing. We need the health systems in place. The money has to come from someplace, right? Whether it comes from the government, from a World Bank loan, from donor countries, the money has to come first then we’ll get the drugs. So yeah, there are some promising things happening, but not enough.

Pascale: What would you say to anyone who missed last night’s Digital Town Hall, but still wants to get involved or learn more about TB?

Shiva: I think, for the people that missed the Digital Town Hall, I think if they are passionate about it there is still a lot of opportunity for them to be part of it. Every resource counts, every person counts at this critical time. We need every little help and support from everybody, especially with the UN High-Level Meeting coming up. Every voice is important, every voice urging the Prime Minister to attend is important. Through reaching out to the media or through writing or meeting with parliamentarians or through other influential people, we need those voices to make our country’s leader understand that Australians deeply care about TB. And therefore we expect the state to care about this problem and represent the country. If you have missed the Town Hall, you can access all our resources here  and of course our volunteer team and staff can always help link people up with a team leader in their respective area. We can also help them decide actions to take; whether they want to meet an MP or senator from their area, write a letter to the editor, or do some social media advocacy, because social media at this stage is very, very important to create awareness. Secondly, we want to make people understand that this is an important problem and we need a call to action. So you know, the younger generation especially, are in the media space, whether its Instagram, Facebook, Twitter, or any other format that we use, we want people to do that to increase the profile of TB. So my message to people who have missed the Town Hall is that you have not really missed the bus, you can always come forward, because the work does not end with the UN High-Level Meeting. I would say it actually starts after the UN High-Level Meeting and all the preparation we are doing for that meeting will be just the beginning.

Pascale: Thanks Shiva! Is there a message you’d like to end on?

Shiva: About 33% of the world population is infected with TB – that’s about two billion people. It’s a major problem for 33% of the world’s population. Isn’t that a big enough issue for us to act? That’s like Ebola multiplied by, how many thousand times? And it’s infectious. That should just ring the bell. I can’t do any more maths than that.

Inspired to take action to help bring attention to TB and the UN HLM? Visit our ACTION Page and get started.

[1] The economic and mortality modelling, which was calculated by auditors KPMG, modelled a scenario that doubled current infection rates for TB and an absolute increase in current rates of resistance by 40 percent. For more information on methodology see: https://www.kpmg.com/UK/en/IssuesAndInsights/ArticlesPublications/Documents/PDF/Issues%20and%20Insights/amr-report-final.pdf

 

Shiva Shestra

Shiva Shestra

About Shiva Shestra

Shiva Shrestha is RESULTS Australia’s Global Health Campaign Manager. He is our lead for TB campaign work, including providing support to our role as host of the Secretariat to the Australian TB Caucus.

Shiva originates from Nepal, and has been working in the public health sector for over a decade. He specialises in public health advocacy, behaviour change communication, and community engagement. In the past, he has served in various roles with international organizations like International Union Against TB and Lung Diseases (The Union), FHI 360 and PATH.

In his recent work with The Union, Shiva has managed the India TB Caucus and the partnership work with Rotary India and HelpAge. He has a Masters in Health Administration (MHA) from Tata Institute of Social Science, India.