Tag Archives: TB

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:

IMG_2545

IMG_2547

 

 

 

 

 

 

 

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

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:

download

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.

download2

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.

IMG_1076