Tag Archives: TB

RESULTS remembers and honours the life and work of Glenn Thomas

RESULTS UK offers its deepest sympathy to the friends and families of all those whose lives were lost in the MH17 crash. Our director, Aaron Oxley, remembers and honours the life and work of Glenn Thomas, a longstanding friend of RESULTS.

It’s hard to believe that it’s been over a week since the shooting down of flight MH17 above Ukraine. There are almost no words to fully express the senseless loss of those 298 people. Among those on the airplane was Glenn Thomas , who worked for the WHO Communications Department, and who has been an ally of RESULTS UK for many years.

Our history with Glenn goes back well over a decade. At my first ever RESULTS National Conference as a grassroots attendee back in 1998, Glenn was one of the keynote speakers. He spoke passionately about TB, then, as now, one of his communication priorities. This was back when RESULTS UK was just starting our journey of understanding TB and its impact in the world, and Glenn was full of important insights that meant we could speak with confidence about what can sometimes be a very complex disease.

Glenn Thomas

Part of that RESULTS conference was a gala fundraising auction, and Glenn had volunteered a lot: “A weekend break in my flat in Geneva”. I was the one who bid, and won.

For many reasons it took until 2013 – 15 years later – for me to claim that lot when I visited Geneva for the World Health Assembly. While I was there, Glenn and I went out to dinner. The conversation revolved around how to get the press to pay more attention to TB and other neglected global health issues: as usual, Glenn had ideas to test out and ideas to explore.

That it took 15 years for me to collect on my fundraising auction lot, and that Glenn still so enthusiastically honoured it, tells you everything you need to know about the kind of person he was and his lifelong commitment to leaving the world a better place than he found it.

Besides the conversation, what I remember most of that evening was Glenn’s huge smile, one that started in his eyes and overtook his whole face. It was impossible not to get caught up in that smile.

That bright smile brings to mind Glenn’s great help in putting on a special screening of the Jane Campion film “Bright Star”, about the life, and early death from TB of the Romantic poet John Keats. Besides making sure that many high-level media representatives attended, Glenn was photographed with many others holding a sign that read “No More Bright Stars Lost to TB.” 

Glenn was needlessly taken from us far too soon, along with far too many others aboard MH17, and countless more by the diseases he fought so hard to end.

He will be missed.

‘Why isn’t my life worth anything to Romanian authorities?’ – Cristina reflects on surviving MDR-TB in Romania

This is our second blog from Cristina in Romania which she has written following a visit from UK parliamentarians back in May. You can find her first post and other voices from those affected by TB on the  TB Europe Coalition website.

‘Why isn’t my life worth anything to Romanian authorities?’ – Cristina reflects on surviving MDR-TB in Romania

“- Cristina?!!”  I can still hear the deep voice of my grandfather.

“-Come here! Do you want to hear a story?”

“-Yes, grandpa! Tell me the one with the mountains and the rivers, the birds and the green pastures, the hills and the planes and the deep blue sea.”

“-There was once this beautiful country called Romania. God had blessed it with tall mountains, and green valleys, wavy hills, and vast planes and oh…yes..the deep blue sea…”

View from Bisercani Hospital, Romania. Credit: Tom Maguire/RESULTS UK

View from Bisercani Hospital, Romania. Credit: Tom Maguire/RESULTS UK

I would close my eyes and imagine all these beauty. A feeling of great happiness warmed my chest. I’d often fall asleep dreaming of tall mountains, great lush planes, courageous kings and warm hearted inhabitants of this magnificent land, protected by my grandpa’s strong hands.

When I would wake up he’ll look at me with his deep blue eyes, all of a sudden very serious: “-You have to love your country, you know! This is your home! This is where your kind live! Great acts of courage were written with blood on this soil.” and he’d make me touch the ground and I’d feel a part of a whole. I’d feel that all these brave people before me were my roots to this land and I’ll be the roots for the ones coming after me.

I was taught to love my country. To think that for better or worst I belong to this land. I’ll protect it and it’ll protect me.

Since I got sick, I don’t know anymore. My country betrayed me. I no longer felt protected. The people I entrusted my vote, that vowed to care for our people no longer considered my life important. Where are the brave kings and knights that once ruled our land? They disappeared into fog, like my grandpa did.

At first I was shocked. No! It can’t be! You can’t just ignore a contagious disease with the potential to kill thousands. Wasn’t it enough that great minds of our world were already forever lost to this horrible disease? Anne and Emily Bronte, Albert Camus, Anton Chekhov, Franz Kafka, Paul Gauguin, Modigliani and the black list goes on, and on.

But it was true. They are ignoring it, consciously putting in danger innocent people.

And then it became obvious. I was all alone in this battle. And the more I read, the more I found out the more disappointed I was.

Not long ago I met this group of English members of Parliament. They made me feel envious…Envious that they care about their people. They made me think. Why isn’t my life worth anything to Romanian authorities? Why aren’t we looking after our people? The “whys” will always keep spinning in my head.

This is the question I’d ask the politicians from all over the world: Why? Why die uselessly?

So you think TB doesn’t affect people in Europe?

Jessica Kuehne, Health Advocacy Officer at RESULTS, presents some key facts about the scale of the TB epidemic in Europe and what RESULTS and partners are doing to help get rates down.

We talk a lot about how many people think TB is a disease of the past when in fact it still kills 1.3 million people every year. Yes, more than 90 percent of all the people who get sick with TB live in developing countries. But – Europe is not immune from the one disease that has killed more people than any other in history.

Here are a  facts about TB in Europe that might surprise you. They are:

  • TB is the top infectious disease killer in Europe. Of all deaths caused by communicable diseases (diseases caused by viruses, bacteria, parasites etc.), more than 40 percent are still due to TB.
  • Europe is a hot bed for drug-resistant TB. Although the European region only accounts for 13 percent of the world’s population, it makes up nearly a quarter of all drug-resistant TB cases.
  • The European Union has some of the worst treatment outcomes for drug-resistant TB. Of all people who are diagnosed with multidrug-resistant TB worldwide, only about half are able to successfully complete their treatment. In the EU this number is even lower – only one third of patients with multidrug-resistant TB successfully complete their treatment.

So the answer is yes, TB does still matter. And with drug resistance on the rise, TB in Europe REALLY matters.

Treatment for drug-resistant TB is tough – patients have to have daily injections at the start of treatment followed by two years of swallowing fists full of pills. On top of this come the side effects – vomiting, diarrhoea, headaches, depression, suicidal thoughts and even deafness.

Credit: Tom Maguire/RESULTS UK

Credit: Tom Maguire/RESULTS UK

Want to know what it’s like to have to go through that treatment? Read Marina’s account of going through TB diagnosis and treatment in three different EU countries.

Marina said that during those two years, one of the things that kept her going was a quote by Martin Luther King who said:

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”

Marina said she tried to focus on whatever she could to take her forward.

TB is often forgotten in Europe. Even amongst the TB community, little attention is paid to a region where people think TB isn’t actually a problem or, when it comes to Eastern Europe and Central Asia, people don’t know very much about.

But it’s not all bleak news. Last week, the TB Europe Coalition brought together 24 TB advocates from 13 countries across Eastern Europe and Central Asia to build a network of individuals raising the issue of TB and to work out ways of getting Governments to allocate more funding for TB in the region. RESULTS is supporting the coalition to build stronger ties in the region and find ways advocates can support each other and work together to respond to TB in Europe.

It was also encouraging to see that Public Health England, when welcoming the World Health Organisation’s new report on antimicrobial resistance, specifically identified TB as an area of antibiotic resistance we need to be paying attention to.

TB still kills an estimated 40,000 people in the European region every year, and the rise in drug resistance is nothing to be scoffed at. This is a disease we should be responding to with a global approach. And when I say global, that includes Europe, too.

World Health Worker Week: no health without health workers

To mark World Health Workers Week, Jessica Kuehne, health advocacy officer at RESULTS, discusses the critical role health workers play in delivering healthcare around the world.

ResultsUK140220-7705How many times have you come into contact with a health worker in the last year? If you’re like me, this would amount to multiple times – I see an optometrist to get my eyes checked, I went to the dentist when I had a tooth ache, I made multiple visits to my local GP when I tore my calf muscle playing volleyball. If you’re like my friend, who avoids doctors at all costs, you may not see a health worker of any kind regularly, but even he eventually needed the help of doctors and nurses when he developed tonsillitis and had to be admitted to A&E.

It’s easy to forget that our health system has health workers who immunise us against serious childhood illnesses, that we have midwives who safely deliver babies to the benefit of both mother and child, and that we have doctors and surgeons who can provide emergency care when needed. Yet 57 countries around the world are facing a severe human resources for health crisis and 83 countries don’t have enough health workers to provide even basic health services:

  • The world is short 7.2 million health workers needed in order to provide essential health services.
  • Africa has 11 percent of the world’s population but makes up a quarter of the global disease burden. At the same time, it has just 3 percent of the global health workforce.
  • 51 percent of births in Africa 41 percent of births in Asia are not attended by a midwife or other trained health worker.
  • Eleven countries in Sub-Saharan African do not have any medical schools, and a further 24 countries only have one.

A country example of how this plays out:

DSCN4799Ethiopia is a country with a population of over 90 million. It has just over 2,000 physicians and fewer than 3,000 nurses.  In contrast the UK, with a population of roughly 60 million, has over 170,000 physicians and nearly 600,000 nurses.

The UK has a nurse to patient ratio of 1:8. In contrast, India needs another 2.4 million nurses just to reach a nurse to patient ratio of 1:500.

All of the health issues that RESULTS works on – tuberculosis, child survival and nutrition – depend on having trained, supported, employed and motivated health workers who can provide health services. Health workers are essential to vaccinating children to give them life-long protection against disease, they are vital to diagnosing people with TB and supporting them during their long and arduous treatment, and they are crucial to providing care to acutely malnourished children.

This week, let’s celebrate the critical role health workers play in delivering healthcare, and let’s take this opportunity to call on the UK Government to help developing countries scale up their health spending and use these funds to strengthen its health workforce. Because there can be no health without health workers.

Some health worker highlights:

One week to go (*gulp*) – Please support!

Dan Jones, our Campaigns Manager, on the final weeks of training for the London Marathon. Dan is running for RESULTS UK, and you can support him here

London Marathon programme

The London Marathon final programme lands on my doorstep – no going back now.

It’s official – there’s only one week left before I’ll be (without any doubt whatsoever) out-pacing Mo Farah, Wilson Kipsang, Geoffrey Mutai et al as I triumph over the 26.2 miles of the London Marathon, in support of RESULTS UK. And I’m definitely feeling *The Fear*.

Training has been hard. The lowest point was at about 7am one Saturday morning, when after a long week at work I woke, put on my trainers and prepared for my longest training run of 22 miles. It took me just under four hours which, frankly, is just a ridiculous amount of time to spend running.

It has to be said though that as I’ve trained for my second ever marathon, it’s been a lot better than last time around. Two years ago, I was training for the Kilimanjaro marathon in Tanzania. At the time, I was living in Nairobi, Kenya where training runs were particularly challenging for a number of reasons. Firstly, we had to get up at about 6am in order to finish training runs before it got too hot (not really a problem in old blighty). Then, there was the lack of pavements and crazy traffic in Nairobi. I became adept at leaping pot holes, dodging through unpredictable traffic jams and purple exhaust fumes.  On one occasion, I took a wrong  turn through a slum, much to the bemusement of onlookers.Yeah, not really the same as running on the suburban streets of Hertfordshire. And then of course there was the fact that the marathon itself was mainly uphill – the clue, I suppose, was in the title. At least this time I know it’s fairly flat.

Dan running in Berkhamsted Half Marathon

Feeling the pain during the recent Berkhamsted Half Marathon (just a “light” training run)

Last time around, I was raising money for a small Kenyan NGO Special Education Professionals that I worked with in Nairobi, who brought together disability specialists including special needs teachers, speech and language therapists and occupational therapists to support children with disabilities and their parents in low income areas like the informal settlements.

This time, I’m raising money for RESULTS! But it’s great to feel that our work is still changing the lives of those same marginalised children. As a concrete example, I’ve been proud to be part of RESULTS’ campaigning to strengthen the focus of UK aid on supporting education for children with disabilities. We have been campaigning literally for years on this issue. Our amazing network of grassroots advocates have written to their MPs, been to Parliament and engaged Team GB’s famous Paralympians on this issue. We’ve worked with hundreds of other organisations, organised events for MPs, gained media coverage and submitted evidence to a Parliamentary inquiry. It can sometimes be hard to see the tangible results that RESULTS achieves, but on this issue, we have seen huge progress. Last year DFID Minister Lynne Featherstone MP announced new commitments including that all new schools built with direct UK support in developing countries would be built accessible to children with disabilities. She then visited Uganda with Paralympian and broadcaster Ade Adepitan to raise the profile of the issue further. Later this week, Parliament’s inquiry on disability and development will publish its report and we sincerely hope that that will go further and include strong recommendations for DFID to do more to ensure UK aid is inclusive of people with disabilities.

That’s an example of our impact that I’m particularly proud of, but I could just as easily have talked about our role in securing millions of pounds for life-saving global programmes to find and treat tuberculosis or to tackle under-nutrition in developing countries, or our current advocacy to ensure a successful replenishment of the Global Partnership for Education, which will deliver a quality education for millions of children.

So I’m feeling proud to be running the London Marathon for RESULTS. With one week to go, I’m excited, nervous, fairly injury-free and, well, terrified. But that’s normal isn’t it?!

Please support this crazy endeavour and help me reach my fundraising target of £1,000 for RESULTS UK. You can donate online at http://www.everyclick.com/danrunslondon.

(also, if anyone is in London for the marathon on Sunday, do cheer me on – I’ll be grimacing and wearing a RESULTS T-shirt)

Photo story: Finding TB cases in Cambodia’s Slums

The World Health Organisation estimates that of the nearly nine million people who become ill with tuberculosis 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.

In Steung Meanchey, Cambodia, a new programme, supported by TB REACH, has been introduced to help find people in slums who have symptoms of TB, but have never received a formal diagnosis. TB REACH is a an initiative of the Stop TB Partnership that seeks to use innovative and forward thinking techniques for finding and diagnosing cases of TB in hard to reach populations.

Steung Meanchey is a poor community on the outskirts on Phnom Penh that sits directly above a sewage lake and has high rates of TB due to overcrowded living conditions and poor nutrition. Many families in the community do not have access to health services or are unaware that symptoms such as a cough or weight loss could actually be the early stages of TB.  To address this problem, the programme sends health workers to visit families to see if any individuals have symptoms of TB. If they have symptoms, health workers collect a sputum sample from the individual, place it in a cool box and then 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 may not sound ground-breaking, it is this sort of alternative approach that has helped the country make inroads against one of the world’s most deadly infectious diseases. Bringing health services to those who might otherwise have difficulty accessing them is helping to ensure people are diagnosed sooner and put on treatment faster, thus stopping the disease from being spread further in the community.

A round up of ‘the best World TB Day ever’

Yesterday, March 24th, marked the 19th annual World TB Day and we saw an amazing day of advocacy, action, media, and high level announcements of new funding and policy from key organisations working on the global TB response.

IMG_2542RESULTS kicked off our day with a briefing in our offices with a group of advocates from around the UK. As people arrived at our office they were chatting about the article they had read in The Metro that morning about World TB Dayand the piece in the Independent Catholic News that our loyal campaigner Gillian Price had managed to get placed; the media was landing! Our Executive Director, Aaron Oxley, spoke about the theme of the day, ‘Reach the 3 million’. He described how each year an estimated three million people contract active, deadly TB but are ‘missed’ by health systems; meaning they either receiving no diagnosis, the wrong diagnosis, quack diagnosis, or are put on the wrong drugs, leading potentially to their TB becoming drug resistant. This year, World TB Day was aiming to re-focus international efforts on finding and treating the three million.

Our group of 20 then set off for Parliament for a meeting and briefing with key professionals working on the response to TB. The briefing was organised by the All Party Parliamentary Group for TB, TB Alert, and RESULTS. On the way we stopped to take a few snaps with our World TB Day boards:

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We headed into Parliament for the kick off briefing which was addressed by three guest speakers. Mercy Annapoorni of Blossom Trust, India, who spoke about the work they are doing working on developing creative approaches to educating communities in Southern India about TB and how to detect and report Mercy and Anthony address the meetingit. We also heard from Anthony Chilembwe of the Sue Ryder Foundation in Malawi who spoke passionately and in detail about the work they are undertaking on developing innovative approaches they are deploying to getting TB diagnosis and treatment done in rural and remote areas of the country, including using cycle couriers to deliver sputum samples from villages to clinics for analysis.

Finally we heard from Dr Emily Wise, a UK infectious diseases registrar who had recently returned from a year’s sabbatical in Uzbekistan working with MSF on an MDR-TB project. She spoke passionately about the brutal reality of this killer disease, telling the audience about a young nurse who had died in her arms after succumbing to MDR-TB, reminding the audience of the crucial importance of finding and treating the many millions of people who contract TB each year.

Following the briefing, and feeling fired up, we headed out into Palace Yard in Westminster, where we were met by the Find & Treat mobile X-Ray clinic (used to find and treat vulnerable people with TB in London) along with staff and ‘peer

The Find & Treat staff and Peer Educators

The Find & Treat staff and Peer Educators

educators’ from the service and featured in an excellent supplement for World TB Day in the Financial Times. The Peer Educators work with Find & Treat to help locate and engage members of the vulnerable populations they work with. many of the Peer Educators are former users of the service, including Patrik, who contracted TB while living rough in London – after he was engaged by F&T he had to completely give up drinking in order to make his treatment work. He managed it, and now he volunteers with the service and is off the streets. Now he works with other homeless people telling them “get on the van!” – he doesn’t take no for an answer. The work that the team does is truly inspirational, dedicating their lives to find and help some of societies most vulnerable people; they really are helping ‘Find the missing 3 million’. The work of Find and Treat was also featured in an excellent supplment for World TB Day by the Financial Times that praised the work the team are doing to diagnose and treat vulnerable populations.

Thanks to the hard work of staff at RESULTS and Find & Treat, we saw a whole load of MPs and Peers drop by to hear more about the service, TB, and Finding the 3 million. Including:

Jane Ellison MP, Public Health Minister for the UK ; hearing all about Find & Treat from grassroots advocates

Jane Ellison MP, Public Health Minister for the UK ; hearing all about Find & Treat from grassroots advocates

Alan Duncan, Minister of State for International development

Alan Duncan, Minister of State for International development

Heather Wheeler MP

Heather Wheeler MP

 

 

 

 

 

 

 

 

 

Jim Dobbin MP

Jim Dobbin M

Simon Wright MP with Norwich group leader Mark Pointer

Simon Wright MP with Norwich group leader Mark Pointer


Virendra Sharma MP meets Dr Al Story, head of Find and Treat and matt Oliver of the APPG-TB

Virendra Sharma MP meets Dr Al Story, head of Find and Treat and Matt Oliver of the APPG-TB

 

 

 

 

 

 

 

Meanwhile in Johannesburg South Africa, ministers of state, the World Bank and the Global Fund to fight AIDS, TB and Malaria announced an exciting financial commitment to tackle TB in the gold mining industry of southern Africa. In this co-authored article from South African health minister Aaron Motsoaledi and Mark Dybul, head of the Global Fund, the pair called for a strong public-private partnership between mining companies and the state and announced that the World Bank and Global Fund are ready to commit $100 million each to tackle TB in the mines, providing mining companies come to the table. If created, this public-private partnership has the potential to save thousands of lives in the region and would help get the epidemic properly under control. The mining companies must now step up.

After a short trip to the LSHTM World TB Day symposium to hear a number of engaging talks about finding the missing 3 million cases of TB, we headed back to Parliament for the launch of a consultation on a National Strategy to tackle TB here in the UK. The event, hosted by the APPG on Global Tuberculosis and Public Health England, marks the beginning of a 3 month consultation period with key stakeholders before a final strategy is agreed upon. You can read more about the strategy in this press release from Public Health England.

Thanks to everyone who came down for an exciting and jam-packed day of campaigning and advocacy. We can safely say that this one of the best World TB Day’s ever!              

Photo story: Drug-resistant TB in Romania

The fifth and final blog in our World TB Day series comes from Tom Maguire in the form of a photo story from his recent trip to Romania.  During two weeks in December, Tom visited hospitals, sanatoriums and prisons to meet with drug-resistant TB patients and the doctors and nurses assisting them with their treatments. These photos of some of the people he met visualise both the severity of the treatment and the loneliness and isolation that many patients feel being away from their loved ones whilst completing treatment that can last up to 2 years.

Rosezenny Rivilla and her battle against MDR-TB. Part four in our World TB Day series

Today is our fourth and penultimate blog series on TB in the run up to World TB day on March 24th. Rosezenny is from the Phillipines, a country with a high burden of TB; demonstrating the truly global nature of this disease.

Rosezenny Revilla

When 41 year old Rosezenny Revilla of Casiguran, Aurora, Philippines was diagnosed with multi-drug resistant tuberculosis her whole world came crashing down. As a married mother of three children and a grade school teacher she faced the question “why me?”  Rosezenny’s diagnosis changed both her and her family’s lives. Rosezenny left her teaching job to move to Manila to seek treatment. At the beginning of her treatment Rosezenny faced shock and denial. Unlike cancer and other well-known and well understood sicknesses, TB is a lonely disease.  Rosezenny faces feelings of isolation and rejection from her peers and a lack of social support. Rosezenny’s resilient spirit is helping her through this debilitating disease. Rosezenny expresses gratitude towards the support provided by The Global Fund and is determined to conquer the disease.

While TB is most prominent among vulnerable populations, anyone is susceptible to it. Low levels of awareness of TB by the public and health care professionals results in a lack of social support for those suffering from TB.  To improve the long term impact of TB patient’s physiological and psychological well-being it is essential to continue TB research and to educate others on the disease. Spreading awareness and continuing TB research and funding is the only way to improve treatment prospects for the future.

Watch Rosezenny speak about her story here

Family; our most powerful ally in the fight against TB. The third in our World TB Day series

“If we fail to support the families that fight on the ground in this epidemic, we are neglecting our largest ally”.

The third post in our World TB day 2014 blog series comes from epidemiologist and campaigner on TB among gold miners, Jonathan Smith.

Blog Post Image Jonathan

He didn’t know what to say when I asked him. He was completely jarred by the question, a deer in headlights. With his eyebrows raised he shifted his eyes nervously between his sister and wife as they looked at him, as if he was watching a Ping-Pong match between the two. The room was silent as the two women waited in anticipation while the former South African miner – bedridden from the multi-drug resistant tuberculosis complicated by silicosis and HIV – mustered up the energy to respond. They both doubled as his caregivers, and his response would have significant impact on them far beyond the obvious. He composed himself, slowly took a sip of water from the glass resting on his bedside table, and delicately began to speak.

“I’d say they’re both pretty good cooks.”

The room exploded in laughter as a barrage of pillows flew his way. “That’s not an answer!” one woman shouted as she laughed. “Pretty good?” another lamented. He sheepishly cracked a smile, and then finally began to laugh. His laugh was deep, labored, and heavy; as if his emaciated body was doing all it could to get the chuckles out. Both women continued to proclaim that, indeed, they were the better cook.

That afternoon, the two women situated the miner in a chair before they carried his bed outside. With the southern African sun beating down, they placed it beneath the shade of a tree. “Outside is better, he likes it better out here,” his wife said as she made sure his head would be in the shade. “He hated indoors.” Once the bed was situated, the two women carried the former miner outside and laid him down, where we then ate lunch. Neither of the women were particularly good cooks.

It was rare for the two women to be together, as they typically had separate responsibilities. Each week, the wife would travel to the capital city, about a half-day’s travel away, to work as a cleaner at a bank. She also would secure the complex MDR-TB medication for her husband and bring it home each weekend. The sister, on the other hand, would travel from her home to the miner’s home in order to care for him on the weekdays, keep the children at bay, and get his HIV treatment from the local clinic.

This had been going on for two years, but now, without significant improvement, the women feared the worst. His body was becoming weaker, the drugs were becoming harsher, and his energy was depleting. He was dying. That evening, his wife pulled me aside.

“I’m not sure we will make it through the night. Is there anything you can do for us?” she asked.

Herein lies the confrontation that curiously only the wife of a miner can afford me.

Every expertise has its definition of success. In epidemiology, we often look at successes and failures of public health as a fluctuation in data – a regression line, an R0. This is a good thing. These analyses are critical in knowing how to overcome the world’s most pressing public health issues. In health policy, we look at successes and failures in public health as the influence of a policy on the health of a population – the uptake, the behavior change, etc. This is a good thing, and allows us to shape policy and rhetoric to be most efficient. In innovation research, we look at success and failures in public health as the ability to prove a vaccine, or a new way to deliver diagnostics. This is a good thing, and because of innovation, we have prevented countless deaths.

As an epidemiologist I could have told these women any number of things about overcoming TB in the mining sector – the changes that need to be made for silica dust reduction, the need for single dwelling and family style housing, continuation of care at home, and the list goes on and on. But even the most eloquent explanation would not have helped answer her question. In this moment, to these women, success was not defined by charts and graphs, or policies, but rather by one man making it through one night. It was that simple.

On the surface she was much better equipped to answer her own question. She knew his nutritional needs – where to find the vegetables, where to get fresh water. She knew how to navigate the public transportation to get his medications, and when to administer them. She knew to call her son over to lift his spirits; to remind him that his mother “would be so mad if you left us.” After all was said and done, these were the things that kept him alive. Hope. Grace. Love.

We overlook many of these things in our discussions of disease; they are looked at as soft, bleeding heart, or otherwise ancillary. Scientists get scared at things we can’t quantify. I don’t mention these things to draw an emotional response; these factors – factors that bind families and communities together – have a significant, tangible role in overcoming the epidemic. I can assure you that without the love of his wife, the hope of his recovery, and the grace of his family, this miner would have long since passed away. They are who got him his medication, fed him, bathed him, and all the while made sure he had a smile.

TB in the South African gold mining sector is the single worst public health issue in the world today. The mines have the highest incidence of TB ever recorded in the world, spanning any period in history, and the vast majority of the hundreds of thousands of men who work in the mines are oscillating migrants who travel back and forth between their rural homes and the urban mines. In addition to exposure to the TB bacilli, they are exposed to high levels of silica dust and HIV – two contributing factors to TB that, when combined, exhibit a multiplicative risk for development of the disease. Ultimately, this leads to a population that is incredibly large and highly mobile, and that is exquisitely susceptible to contracting and disseminating TB. Overcoming these issues will take a considerable amount of manpower, time, and ingenuity; and in many other writings my colleagues have provided data-driven papers to address them.

This is not one of those writings. The unattainable expertise of a family who suffers through TB is an area of the epidemic that is woefully under-represented. We speak of these things often – to put a “face to the epidemic,” the “people behind the data,” and so on – but we never consider how, and why this is important beyond the obvious.

If we fail to support the families that fight on the ground in this epidemic, we are neglecting our largest ally. If we fail to consider their lived expertise as equally important to our medical and epidemiological expertise, we are doing an injustice; not just to the individual, but to the entire global machinery that is TB control. To draw from the old adage – our data, policies, and recommendations can lead the horse to water, but the families make them drink.

But how do we provide this support? In the context of millions of cases of TB, how is this logical? The key is realizing that our version of the epidemic is not the same as those families fighting TB, though ours is equally as challenging. Our TB epidemic will never be characterized by cooking dinner for a man dying of TB, nor will we ever traverse the public transit system to locate the appropriate clinic. But that doesn’t mean there is nothing we can do. Our fight is to ensure that those fighting these battles have the tools they need to win; that the global TB funding for innovation and research is secured, that the new developments we need come to fruition, and that data-driven policies that support patient-centred care are rolled out. In continuing to fight our epidemic, we can ensure that future patients avoid illness and the devastation that accompanies TB.

Jonathan Smith is a lecturer in Global Health and Epidemiology of Microbial Diseases at Yale University and an affiliate of the Yale Global Health Leadership Institute, where he researches epidemiology of TB and HIV in the context of migrant populations. He is currently spearheading the Visual Epidemiology Project at Yale, an effort to combine data-driven academic dialogue with an individual, story-driven component. He also filmed, edited, and directed the film They Go to Die, a documentary film-in-progress investigating the life of four former migrant gold mineworkers in South Africa and Swaziland who have contracted drug-resistant tuberculosis and HIV while working at the gold mine.

This post first appeared on the blog of AERAS, a not-for-profit TB vaccine development organisation. http://www.aeras.org/blog/recipes-for-survival#.UymNHfl_uSo