Tag Archives: TB

Finding and Treating People with TB and HIV; part two of our WTBD series

This year, the theme of World TB Day on March 24th is “Reach the 3 million.” Advocates, researchers, experts, and communities around the world are rallying around a call to reach the 3 million people who have tuberculosis (TB), but do not receive the care they need.

In the second blog post of our week long series in the run up to World TB Day we look at the interaction between TB and HIV. TB is the leading killer of people living with HIV. To reach the 3 million, it is therefore essential to address this deadly co-epidemic. Our colleagues in the ACTION Partnership spoke to advocates and experts from Kenya, Malawi, South Africa, Tanzania, and Zambia on the challenges and opportunities surrounding efforts to find, treat, and cure everyone with TB and HIV.

TB and HIV Integration

Dr. Raymond Chimatira (@Selektarj) , Programme Manager, TB/HIV Care Association (South Africa)

TB is still the leading killer of people living with HIV, so we cannot divorce the two. There are a lot of documents with guidance on why and how TB and HIV planning and services must be integrated, but strangely, on the ground, these policies are not being implemented. Funding streams for these two diseases are often separated. At the national level, there are different TB and HIV departments that barely talk to each other, and that use different indicators and tools. If you go into communities, it’s the same – there are strictly TB screening programs and strictly HIV screening programs. In my lifetime, I need to see a stage where we don’t just talk about integration, where we just do it. This requires a mindset shift that starts with global organizations and trickles down to national programs.

Stigma

Nathan Nhlane (@MNNhlane), National Coordinator of the Zambia National Anti­retroviral Support Programme 

The same levels of stigma that are there on HIV are there on TB. If a person has TB in a family, only the closest of relatives will know. The rest will be told it is pneumonia. That’s it. It’s because a simple message has gone out that TB is airborne, so even in households where the person with TB is being taken care of, you will see discrimination at its highest. If someone in that household who has TB uses a cup, others will try to find another cup, and let the first cup dry out. Stigma is there, and it’s high. We must make it more socially acceptable to seek treatment, and change the language of ‘confidentiality’ that surrounds TB and HIV.

Increased Domestic Funding

Maureen Milanga, Project Associate with the AIDS Law Project (Kenya)
People know about the Abuja Declaration from 2001, when African Union countries pledged to increase government funding for health to at least 15% of their overall budget. But 2001 was a long time ago, so now we must ask: How can countries in Africa get to 15%? And when you tell governments that you want 15% you have to tell them what it’s for. For instance, in Kenya, only about 300,000 people are on treatment for HIV. We also don’t have enough doctors.  So there’s more work for us as advocates to follow up on that pledge and make sure something actually happens.

Clara Banya (@ClaraBanya), Malawi Network of People Living with HIV/AIDS (MANET+)

As a person living with HIV, I’ve had the privilege of accessing treatment and having quality of life. I’ve been able to contribute to my family, but also to my country in a positive way. But I’ve seen a lot of women in my country, who are in the rural communities, who are facing many problems. Some, even until now, can’t access treatment. Increased domestic funding for TB and HIV is a part of solving this gap. Malawi has done a lot, that we have to appreciate, but as a country, I think there is more that we can do. Increased domestic funding for health will help to bridge gaps and also create a feeling of ownership. If we have that feeling of ownership, we can create sustainability. We will be able to ensure funds are being used in the right way, and we can monitor and evaluate efforts. People at all levels – from grassroots to implementers – would also feel that they are doing something for their country.

Community Involvement

Olive Mumba (@LivMumba), Programmes Manager, The Eastern Africa National Networks of AIDS Service Organizations (EANNASO)

There are national policies out there that impact treatment, care, and support, and affect how people in communities access services. My role at EANNASO is to make sure that when policies are being made, that they are community-friendly. Often, in decision making, the voice of national organizations represents communities. But why can’t people from the communities sit at the table? Communities should be part of decision making at national and regional levels, and the people living with these diseases should be the ones to voice their concerns. I have seen there is a big gap –people at the community level don’t know what is their right and responsibility. As part of their health budgets, governments should set aside a portion to support the capacity of communities to participate.

This post first appeared on ACTION.org here: http://www.action.org/blog/post/perspectives-finding-and-treating-people-with-tb-and-hiv

Amy’s story; the first in a new series leading up to World TB Day

“I want to see TB banished to the history books”

This year, the theme of World TB Day on March 24th is “Reach the 3 million”. Advocates, researchers, experts, and communities around the world are rallying around a call to reach the 3 million people who each year contract TB but do not receive the care and support they need. In the run up to World TB Day, we will be posting a different blog each day to profile the disease from a variety of perspectives. Today our post comes from Amy McConville; Amy is a TB  patient/advocate from the UK who works with the TB Action Group (TBAG). This is her TB story:

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Over the course of several months my GP diagnosed me with a series of chest infections. The antibiotics made no difference. As my cough worsened my appetite faded away. After nearly nine months I got an appointment at the chest clinic and by that point, I only weighed five and a half stone.

The cough had developed into an awful pain in my left lung. I took to my bed and stayed there for weeks. The doctors couldn’t seem to diagnose me and I was scared that I might never recover.

It felt like my body was giving up on me, I was incredibly weak, I couldn’t eat, even my favourite food made me feel nauseous. TB is a wasting disease; it consumes you from the inside. I’d been ill for over nine months, I couldn’t remember the last time I’d had a proper meal.

Finally, the diagnosis arrived. I had active pulmonary TB.

TB drugs are daunting; I knew about the potential side-effects and they scared me, drugs are supposed to make you better, not make you ill. So I didn’t take them. A week passed then two, then three. I knew I should have taken them but I didn’t. Finally, I spoke to a TB nurse. She seemed to understand straight away, and said that she’d help me through any side-effects. So, a month after finally getting my diagnosis, I started taking the pills.

Although, at the time, that seemed like a huge first step, it was barely the start. By the time I swallowed the first set of pills my left lung had collapsed. I found out a couple of weeks later and was devastated. A vital part of me had literally died.

I was lucky that I didn’t experience the worst side-effects from the drugs, but that didn’t mean I got off lightly. I had searing joint pain. I used to wake up in the middle of the night with the feeling that my joints were on fire. My hair was falling out and I was put on pain medication and steroids. I couldn’t even guess how many pills I took during that first phase of treatment.

After battling on with the treatment, I was finally given the all clear at the end of that year. I was looking forward to putting the TB behind me and catching up on lost time at university.

But at the start of February the following year, just three months after getting the all clear, I relapsed. My Easter was spent in hospital, in my own room, alone. Everyone who entered had to wear a mask because the hospital was worried I might infect other people. TB is often a very lonely disease, and I have never felt so lonely as I did that Easter.

The first round of my TB treatment had not been successful at all. My collapsed lung had provided the perfect place for the bacteria to hide and when I’d stopped taking the drugs, it came back fast.

The doctors said that my left lung had become a “reservoir of infection” and was attracting other bugs that were making me ill. It was, according to the specialist, irreparably damaged and the only option was to remove it.

But before I could get to have the operation, there was another complication. I had a shadow on my right lung. I’d stopped treatment a couple of months before the operation, and the TB had bounced back again.

I can’t describe the shock. I was horrified. TB had already claimed one lung and was infecting the other. It was using my own body against me to make me ill. It was stealing away my quality of life.

The hospital didn’t have a plan for me. Nobody seemed sure what to do next. I was sick, my education was on hold and I didn’t know if I’d be able to finish my degree. As an intermittent student, I was ineligible for benefits but TB drugs hadn’t yet been made free for patients so I had to pay for them. I plunged into debt.

They added second line drugs into my treatment. May came around; the doctors decided it was the right time to have the operation.

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Amy addressing a meeting of the All Party Parliamentary Group on TB

And all of a sudden, things got easier. I started putting on weight, I was getting fewer infections, I was still on treatment but I was finally getting better and my life was back on track. But it wasn’t quite that easy. Two years after completing the last round of TB treatment, I was diagnosed with depression and anxiety.

Academically I was struggling, I’d got support with my financial problems but it was still difficult. Although my health was under control, my life was not.

My GP said my depression was due to the “severity and prolonged nature of the illness”, but I think it was because I blamed myself for what happened. A doctor had once told a whole ward that it was my own fault that I was in hospital. It was a throw-away comment, but it stuck in my head and I felt so guilty.

Still, I managed to graduate, sorted out my finances and saw a counsellor. Now I do whatever I can to let people know about this disease and the effects it can have.

Nine years ago TB turned my life upside down and I’m still putting it back together. I’ll be carrying the consequences for the rest of my life and I’m one of the lucky ones; I survived. Whatever we can do to stop this disease, we have to do it. No one should have to go through what I went through.

The long delay that Amy experienced between the onset of symptoms and her eventual diagnosis are quite common. The median delay between patients experiencing symptoms and diagnosis with TB was 74 days in 2012, and 43% were diagnosed more than 90 days after the onset of symptoms. People who have active pulmonary TB and are left untreated remain infectious. Reducing the diagnostic delay is vital to reducing the number of cases of the disease.

Amy’s story also exemplifies the need for TB to be treated as seriously here in the UK as anywhere in the world. Improving doctors’ and nurses’ ability to find and treat TB at first glance is essential for ensuring that no one else has to go through a struggle like Amy.

TB in Cambodia: Seeking Sputum Samples in a Sea of Sewage


DSCN5514This is the third installant in our series looking back at RESULTS’ delegation to Cambodia a few weeks ago. The parliamentary delegation looked at how the country is improving the health and education of its population. Jess Kuehne, Health Advocacy Officer at RESULTS, describes Cambodia’s approach to finding and treating people with TB within some of the country’s poorest and most vulnerable communities: 

Some of you may remember the story in the news recently about London homes having to be evacuated due to a burst water main causing sewage to flood the streets.  Those affected described the flooding as “revolting”, “stinky” and “pungent”.

DSCN5518This experience was horrible and disgusting enough to make it newsworthy in the UK, something many would consider to qualify as intolerable living conditions. As unacceptable as the situation sounds, having your home surrounded a sea of raw sewage is the reality for some of the poorest communities in Cambodia: Steung Meanchey is a poor community on the outskirts on Phnom Penh. The village sits directly on top of a sewage lake – houses have been built on stilts and planks of wood create narrow walkways between peoples’ homes. Raw sewage flows beneath and round the village. The stench is overwhelming, yet children leap and run across rickety wooden boards that threaten to give way at any minute.

DSCN5503Unacceptable, you might ask? It is daily life for the 110 families that live in this community.

It is here that tuberculosis, the long-forgotten disease of the past, continues to flourish, thanks to risk factors like cramped and overcrowded living conditions and poor nutrition. Added to this is the lack of access to health services that stops individuals who are sick from seeking treatment.

Despite these deplorable conditions, a programme supported by an initiative called TB REACH is improving the health of the population that lives here. One of the aims of our trip was to examine how Cambodia is dealing with its extraordinarily high rate of TB. To put into perspective the sheer scale of the TB problem here – Cambodia successfully managed to halve its TB rate over the last decade, but it still has one of the highest rates of the disease in the world.

The World Health Organisation estimates that of the nearly 9 million people who become ill from TB every year, nearly one third are ‘missed’ by national health systems. This means that roughly one out of every three individuals with TB is never officially diagnosed or treated and continues to spread, suffer and die from the disease – Cambodia is no exception. This is where TB REACH comes in – it had funded over 100 projects in 44 countries aimed and supports new and innovative approaches to find and treat those who otherwise don’t have access in TB care.

DSCN5510In Steung Meanchey, rather than waiting for individuals to seek out health services, we saw health workers go door to door interviewing households to see if any individuals displayed symptoms of TB. If they had symptoms, the health worker would collect a sputum sample from the individual, place it in his or her cooler box, and transport it back to the lab for testing. If the person turns out to have TB, they are provided treatment free of charge in their home until they recover.

While the approach of actively finding people in Cambodia who have TB doesn’t sound ground-breaking, it is this sort of alternative approach that has helped Cambodia make inroads against what remains one of the world’s top infectious disease killers. Bringing health services to those who otherwise have difficulty accessing them means that people are diagnosed sooner and put on treatment faster, which improves their chances of recovery and stops them continuing to transmit the disease to others.

TB has long been the forgotten child in terms of the top poverty-related disease, as international attention is usually focused on the other top two killer infectious diseases – malaria and HIV/AIDS. The UK Government should continue the leadership it has demonstrated on malaria and HIV/AIDS and apply it to TB by supporting innovative programmes like TB REACH that are taking the initiative to drive out TB. Only then will we finally be able to consign this ancient disease to the pages of history.

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Tuesday Night’s Conference Call, A Precursor to World TB Day

On the evening of Tuesday the 2nd of March, RESULTS held a conference call as a part of the World TB Day campaign.

TB is not only a global issue affecting some of the poorest countries in the world but also a local problem. There were nearly 9,000 reported cases of TB in the UK this year. This month’s action is about linking the local with the global. We invite you to join RESULTS on Monday the 24th of March for World TB Day.

During RESULTS Tuesday conference call Amy McConville, TB patient and advocate in the UK shared her personal experience with TB. Amy was diagnosed with pulmonary TB in 2005. Amy first had TB in her left, then right lung. It took 12 months from the point of experiencing symptoms for Amy to get diagnosed with TB. Because Amy’s diagnosis took so long, her TB was already at an advanced stage upon beginning treatment. Ultimately, Amy had to have surgery to remove her entire left lung. With delayed diagnosis come complications. In order to improve health outcomes of TB sufferers, TB must be diagnosed as soon as possible. The typical profile of a TB sufferer is someone with a compromised immune system that comes from an area with high rates of TB. It is important to recognize that while some groups of people are more vulnerable to TB, anyone can get TB. It is imperative that clinicians and the health community strengthen their awareness of TB and possible symptoms.

Amy describes TB as a lonely disease because of the low levels of awareness amongst the public and amongst healthcare professionals. When Amy was diagnosed with TB she experienced feelings of isolation due to the lack of support networks. She stresses that social support networks are essential to relieve the social hardships of the disease.

TB has a serious long term impact on both physical and psychological well-being. TB drugs have horrible side effects that may make the patient feel worse than the disease itself. Without social support, many TB suffers stop treatment and go on to develop a more serious, drug resistant form of TB. More effective interventions must be put in place. The voices of TB must be heard to improve treatment. TB is currently being treated in a clinical model of health but it needs to be recognized and treated as a social disease as well.

Amy’s campaigning work with the Tuberculosis Action Group (TBAG) has raised awareness of the disease and has united those impacted by TB. TBAG members have the patient perspective which is essential to improve the way in which TB is treated. TBAG has done work to raise TB awareness through media highlighting that the UK does not provide the services that TB patients need.

You can learn more about Amy’s story and the stories of other TB patients in the UK in RESULTS TB Voices Report.

You are invited to join RESULTS on Monday the 24th of March for World TB Day. 9:30am we will meet at the RESULTS office in Vauxhall for breakfast. At 11am RESULTS will head to parliament for a briefing with speakers from Malawi and India with first-hand experience with TB. The “Find and Treat” x-ray unit (a mobile x-ray that screens vulnerable populations for TB and gets them off to treatment) will be parked in parliamentary grounds. Many other World TB Day events will take place at parliament going on until the evening.

Tuesday the 25th of March marks the The Johannesburg meeting On March 25th, ministers of Health, Labour and Finance, along with CEOs from leading mining companies will meet in Johannesburg to continue negotiations on the next steps for the regional response to TB in Mining, including the Code of Conduct. TB in mining has been an issue for over 100 years and the Johannesburg meeting marks an opportunity for mining companies to take accountability for their worker’s health, even after they have returned to their villages.

RESULTS looks forward to you joining us this Saturday the 8th of March at 7pm. RESULTS advocates from around the world and our partner organisations will join together to hear from Alice Albright, CEO of the Global Partnership for Education, in advance of the Global Partnership’s June 2014 pledging conference.

Education and Tuberculosis in the News

The Guardian writes that the United Nations reports that one in four people in developing countries are unable to read. In addition, 250 million children do not have basic literacy skills even if they attended primary school for four years. Lack of education is a leading cause of extreme poverty. The Global Partnership for Education (GPE) has been providing aid and improving education in impoverished countries. Getting better teachers in schools and all children into primary school is a key component of reaching the education for all Millennium Development Goal. Education is not only a stepping stone to ending poverty, but will lead to increased child survival as well.

An investment in education, more specifically women’s education is an investment in the future. In 2012, research by UNICEF reported that investing in women’s education reduces poverty and increases social and economic development.  Making women’s education and health a priority will help reach the MDG targets. While these targets will not be reached on time, the realization and awareness that women’s health and education is a key component to many MDGs that will drive change. In the 23rd January UN conference, Secretary General Ban Ki-moon stressed that reaching development goals require ‘girl power’.  “The United Nations gives girls a ‘gold rating.’ When you invest in their future, you are guaranteed results that multiply across society – on health, education, peace and the welfare of future generations,”

Neglect in tuberculosis research and diagnosis is having damaging effects globally. There have been recent tuberculosis out breaks in a Colorado school in the US as well as more severe outbreaks in  Russia. A dangerous drug resistant tuberculosis strand has been discovered across Russia, Southeast Asia, South America and sub-Saharan Africa. The  World Health Organization reports that the management of TB drugs needs to be closely monitored for treatment to be successful. It has also been noted that additional research on TB and drug resistant TB is necessary.

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It couldn’t happen to me? Living with MDR-TB in Romania

During his time in Romania, Tom Maguire from the campaigns team, met with a young woman called Cristina to discuss her experience of living with multi-drug resistant tuberculosis (MDR-TB). This guest blog from Cristina shows the huge impact MDR-TB can have on a young woman’s life and the level of courage and determination that is needed to complete two years of treatment.

You hear about it on TV but you think ‘Neah! It couldn’t happen to me’, and then it does. And you’re confused, thinking what you’ve done wrong, why did it pick you, until finally you realize you’ve done nothing wrong, you weren’t chosen, you’re just a percentage of those who catch TB, one of the poor, the malnourished or in my case simply unlucky.

Creit: Tom Maguire/RESULTS UK

Credit: Tom Maguire/RESULTS UK

It all started in September 2012. I’d got  a cold – at least that’s what I thought – and I decided to go to the doctor (till today I don’t know why because it didn’t seem to be something severe). He consulted me, gave me some pills and told me to come for another check in few days. I took the pills but immediately after I felt a pain in the upper left side of my back. I went back and told him and we decided to take an X-Ray of my lungs. There it was! A dark spot on my upper left lung that could be either cancer or tuberculosis. I went to a specialist and found out that it was actually TB.  I was told I should be happy, TB is curable unlike lung cancer. Imagine my surprise, I thought TB only existed in the past. I didn’t know anybody with TB, no one in my family had it. After surprise came fright. I was terrified that I might have passed it on to my family. My best friend had just found out she was pregnant. I was devastated. This was a feeling that would come back from time to time to haunt me: did I pass it on to someone?  Will they have to go through the same hell I’ve been through?

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RESULTS welcomes Danielle Lasley to the team

Hello everyone, my name is Danielle Lasley and I have just begun volunteering at RESULTS. I will be assisting with communications work and gra326695_10151421849292154_711762597_ossroots planning for the national conference in May. I will be organizing conference materials and researching potential venues and speakers to speak about the importance of combating the TB epidemic. I will also work on news blogs and utilize tools such as Twitter to help spread awareness of RESULTS campaigns.

I am a student the University of Connecticut in the US. I will be earning a bachelor’s degree in Communications and Psychology in May 2015. At the University of Connecticut I have worked as a Psychology research assistant and also work as a waitress. I am part of UConn’s club water polo team and enjoy being a part of student life and the University’s community.

Currently I am studying abroad in London as a part of the Global Citizenship in Practice Program. This program gives students the opportunity to get involved in the community. I am excited to begin my volunteer work at RESULTS because it not only gives me the opportunity to work with the London and UK community but the global community as well.  I have always been interested in human rights and am excited to be a part of a team that makes a difference.

Nelson Mandela – A Life of Advocacy

Last week, RESULTS staff  were in South Africa running advocacy trainings for partners from across Africa. Steve Lewis describes how plans changed when Nelson Mandela died:

‘Mandela set us free’. An emotional morning in Cape Town workshop

Our trainings were progressing smoothly last week in Cape Town – we had ten partners in one room learning about media work and another group learning advocacy methods in our room. But Thursday at around midnight the news leapt around the hotel that Mandela had died. Many of us stayed up late that night watching the rolling news, talking to friends; everyone was in shock.

Friday morning – how  could we  continue the workshop when all that people wanted to do was talk about Mandela?  How he had changed the country, how he had changed their lives… ? We began with a minute of silence, but then carried on with our planned agenda. We were spending two days studying advocacy methods – some techniques that help you for example, build a strong coalition or hold successful meetings with decision-makers.  Some of these ‘tools’ can come across as quite dry – but when we  suggested assessing the tools in the light of Mandela’s life the room came alive.

“We can learn so much from Mandela’s life”, said Ndumiso.  “He said to us that slavery, and then apartheid were not normal, not inevitable.  They could be ended if people worked together. He said that poverty in not inevitable either. It can be ended.”

A son comforts his mother, laying flowers for Mandela.

“In this workshop we’ve talked about how advocacy should have a clear goal, but also achievable milestones”, said Linda, “and that is what Mandela achieved. The end of Apartheid was the goal, building equality for all sections of society. But there were concrete milestones too – the end of the pass laws, desegregation of housing and so on. That allowed us to see we were making progress.”

“In advocacy we talk about the importance of a clear message”, said Peggy. “We use the ‘EPIC’ technique (Engage the audience, state the  Problem, Inform, Call to Action). Mandela had a very clear message of justice that people all over South Africa wanted to follow. The Call to Action was heard around the world. From Anti-Apartheid we learn that a strong clear call is essential if you want to win support. So for talking about TB, we need a clear message – like ‘Zero Deaths, Zero New Infections’.

Alan Ragi, KANCO director (Kenya) with participants from South Africa & the UK

Alan Ragi, KANCO director (Kenya) with participants from South Africa & the UK

“Mandela was an expert at both ‘Insider and Outsider advocacy’”, said Alan.  “He and the ANC used both.  On the Insider track he negotiated, he was polite and softly-spoken, he held backroom meetings with presidents and staff. But behind him were the mass protests and the threat of armed struggle, the rent strikes and the international boycott.  Mandela had a soft voice but his people had a big stick.”

“Another lesson is that he formed a strong coalition”, suggested Manaan.  “The ANC allied with many groups – the unions, the churches, white people, all races. Sometimes in life we have to ally with groups we would not normally be friends with. For example Nelson allied with the previous president FW de Clerk – that’s why they shared the Nobel Peace Prize”.

We began to talk about leadership… “He was humble but determined. While in prison he learnt Afrikaans so that he could understand  the ruling class and negotiate with them.  He was patient and he lived his values…”  That session could have gone on for twice as long.

“In the end”, said one black speaker, “Mandela taught us about equality. Here I am now, in a workshop with Linda, a white woman, talking equally, sitting together. Mandela set black people free.”

Crowds came onto the streets to march & dance in celebration of Mandelas life

“That’s true”, said Wena, “but there’s more to it. He set all of us free. When I was a child I was told I could not be friends with the little girl next because she was black. I couldn’t understand it. Now I am friends with anyone and everyone. I am proud to work in the Health Service, with black and white and Asian colleagues. All of us together are trying to improve the health of this nation. Because as Mandela said to us, Apartheid was not natural, and could be ended. Poverty is not natural either, and we can end it. Now it is the job of our generation to carry on his work.”

All photos credit: Steve Lewis/RESULTS UK

How the mining industry costs lives

Felix Jakens, Grassroots Campaigns Manager at RESULTS, was recently asked to write an article on TB in the gold mining industry in southern Africa for the Medcin magazine . Here it is in its full glory:

“If TB and HIV is a snake wrapped around the continent, then the head is here in South Africa, and the fangs are in the mining industry” Dr Aaron Motsoledi, Minister of Health, South Africa

When I was asked to write a piece for the Medsin magazine titled ‘how the mining industry costs lives’ I was slightly taken aback: I have 800 words to try and document a topic as vast as that? That can’t be done. Of all of the world’s industries, I would be as bold as to say none has exacted such a heavy loss of human life as mining. From Greek slaves being worked to death in Rome’s salt mines, to early coalmine shaft-failures in Wigan and Newport, to collapses in modern China as illegal mines strip rare minerals from the earth to provide parts for mobile phones, many lives have been lost as we seek to extract all manner of objects from the earth.

X Ray in DoorSo in an issue with so much death, drama and catastrophe who spares a thought for the men who survive ‘life at the mine’ only to take home with them a death sentence? A cave-in at illegal mine in Zimbabwe causing 20 deaths will make headlines around the world; but gold mining activities being directly linked to 760,000 new cases of deadly tuberculosis and many thousands more of degenerative silicosis, each and every year?

Forget it.

That  isn’t a story; and yet this tragedy is unfolding on a scale that we can barely begin to imagine.

South Africa already has the second highest incidence of TB in the world with an infection rate of around 1,000 per 100,000 population; while among gold miners the rate rises to approximately 7,000 per 100,000 (the UK is around 14). That’s around one in three cases across the sub region and around 9% of the total burden; what’s more, data on this issue is sketchy at best, with many hundreds of thousands of men having worked in the mines who no longer identity as ‘former mine workers’ but who has suffered from extremely high exposure to silica dust and TB bacterium. This group has been described as ‘ticking time bombs’.

But why are miners in the region so uniquely vulnerable?

Epidemiologists refer to a ‘perfect storm of disease’ in which physical, biological and social factors combine to create the highest rates of TB in the world. Exposure to silica dust, HIV infection, difficult working conditions and poverty come together to create the highest TB infection rates in the world.

Around 90% of all the miners working in the South African gold mines migrate from rural areas or from neighbouring countries. High levels of poverty and unemployment mean a job in the mines is often the only work available. These men stay in cramped, single-sex hostel-style accommodation which leads to high risk of HIV infection; miners in Southern Africa have HIV infection rates of around 30%, which is very high. Being infected with HIV and the resulting weakening of the immune system makes a person 20-30 times more likely to develop TB.

In the mines themselves, the cramped, hot working conditions are highly conducive to the spread of airborne TB bacteria. Miners are provided with protective masks but their size, and the heat of the mines, means they are often taken off, leaving miners exposed to silica dust and TB bacteria. Measures to prevent the spread of TB, such as air circulation and ventilation are extremely difficult to implement in the mines, which can be many kilometres deep with tunnels as narrow as two metres wide.

A miner working without protective apparatus exposes himself to silica dust. Silica dust is found in gold mines and is easily inhaled. Once in the body the lungs cannot remove it and it can lead to a disease called silicosis, where lung function is impaired and has a variety of harmful effects. One of these is that silicosis damages the lungs and renders an individual around three times more likely to contract TB.

Given the immense damage being done to miners and their communities, one would assume that this is a problem which has surface in the recent past; again you couldn’t be more wrong. In 1903 the Milner Commission Report into TB among miners stated “the extent to which TB among miners prevails at the present time is so great that preventative measures are a an urgent necessity”

So why has so little been done to stem this tide of misery? Again, in an issue so strewn with paradoxes, the interventions needed to tackle the issues of TB, HIV and silicosis are well know and cost effective. Prevention exposure to silica dust through introduction of dust dissemination technology, reducing single sex hostel style housing, ensuring on site diagnosis and treatment for workers and many others are well documented and proven to be effective.

To frustrate the issue further, sector wide application of these interventions would yield an overall positive financial gain to mining companies. A World Bank economic analysis of the issue estimated that an upfront spend of around $750 million would provide a benefit of $800 million by reducing loss of working hours, amount of training needing to be provided, healthcare costs etc.

So despite this issue being clearly understood for over 100 years, with proven cost effective interventions widely known, hundreds of thousands of miners still contract TB every year. But why?

Again, as we keep returning to, the answer is not simple, there are several interconnected factors. Firstly the mines themselves have a serious case to answer. From minor lacks in compliance to outright flouting of health and safety legislation, the mines are a major player in this issue. The Government of South Africa and surrounding countries can also do much more. In SA itself the compensation system for ex-mineworkers is archaic beyond repair and desperately needs to be overhauled.

Currently the fine levied against mines that breach health and safety legislation is too weak to be effective against multi-billion pound mining companies; the importance of mining to the South African economy clearly has an influence over the decisions of government. Unions also must have a case to answer. One accusation is that once these men leave the mines to return, sick, to their communities they are ‘out of sight out of mind’; no longer paying union dues and in some of the most remote, rural areas of the region. Donor governments can and should do more for these communities; using their leverage to increase pressure on all actors to do more to tackle these epidemics.

Looking back, it isn’t hard to understand why so few people are aware of this issue. When a mine collapses its clear who is at fault; the issue flashes into our minds and we can make clear judgements about blame and recourse. With an issue like TB the people who die are out of sight, in rural communities, away from the glare of the press. They die slowly, contracting silicotic TB years after they leave the mine. These men are poor, often abjectly so, with little capacity for recourse, and they have been dying in their thousands since the inception of mining.

But that can’t be where we end, and RESULTS, along with Medsin and our partners around the world are working tirelessly to raise the awareness and create the political will to have a lasting and positive effect on the lives of miners, their families and their communities.

To find out more join our stream or check www.results.org.uk

 

 

TB advocates gather in Paris for conference and call for more ambitious TB targets

Last week at the International Union Against Tuberculosis and Lung Disease civil society made their voices heard loud and clearly when they stormed the stage to demand faster progress towards eliminating TB. The group of advocates, who declared a need for a target of zero TB deaths, brought some much needed urgency to the room as they called for greater ambition in attempts to eliminate TB.

Along with advocates from across the world, participants included members of tbec2the TB Europe Coalition, an informal advocacy alliance of civil society organisations across Europe and Central Asia working to increase the political will to control the disease throughout the World Health Organisation European Region. Those on stage included representatives from Moldova, Macedonia, Romania, Russia, Bulgaria, Azerbaijan, France, Belgium, Italy and the UK .

Against a backdrop of placards and impassioned faces, Colleen Daniels from Treatment Action Group challenges those in the room to aim higher in the fight against TB in order to get to zero TB deaths, zero new TB infections and zero suffering and stigma as a result of TB. 

The voices of former TB patients and civil society actors from across the WHO European Region continued to be heard later on in the week as the TB Europe Coalition hosted a lively and engaging session at ‘advocacy corner’.

The session titled ‘European Voices in the TB Fight’ gave advocates from Eastern Europe and Central Asia the opportunity to speak about their experiences with TB and on how TB is dealt with in the region.

“When I found out I had Multi Drug-Resistant TB (MDR-TB) I was scared and confused, I didn’t understand what was happening to me”, explained Stefan Radut from Romania. During his long treatment, Stefan had to take an injection and 18 different pills every day. This treatment caused him anxiety and hallucinations, he was depressed and his hearing capacity was compromised. “I experienced exclusion and isolation”, said Stefan. “I couldn’t get out and my friends were scared of visiting me”.

In his misfortune, Stefan was lucky because he could access good treatment in a country, Romania, where only very few MDR-TB patients have access to proper drugs, psychological and social support. According to latest data, Romania has a MDR-TB treatment success rate of 16% compared to for instance 91% in Pakistan.

TBEC1Oxana Rucsineanu from Moldova has also been affected by the disease. After being treated for MDR-TB, she founded the SMIT patient organisation, which works to empower TB patients by raising awareness about their rights, including social and psychological support, and how to practically access these services. “We need to raise the voices of TB patients into discussions about decisions that affect their lives” Oxana said.

“When I firstly heard about it in 1999, MDR-TB was only a degeneration of TB due to improper or uncompleted treatment. Now MDR-TB is all over the place”, stressed Elchin Mukhtarli of the NGO “Support to Health” in Azerbaijan. MDR-TB has become a bacterial epidemic in itself and has just been declared by WHO as a public health emergency.

The session illustrated the challenges faced by civil society organisations in Bulgaria, Macedonia and Russia and to hear from the audience on how there are similar problems outside of Europe, such as Pakistan and Kenya.

Sadly the voices we heard at the session are only those of the lucky ones. Too many voices of former TB patients will never be heard.