Showing posts with label case studies. Show all posts
Showing posts with label case studies. Show all posts

Wednesday, 25 September 2013

When free universal healthcare isn't free and isn't universal: a case study in TB treatment from Burkina Faso

As the term of  the current Millennium Development Goals reaches an end in 2015, healthcare workers and reporters worldwide are assessing the efficacy of different global health and development approaches over the last few years. The necessity of improving global health has been one of the highest priorities of development practitioners and activists, the touchstone being universal access and free access.

One project study, which aimed to provide free treatment for tuberculosis patients in Burkina Faso, caught my eye because it illustrates the subtle challenges and difficulties (as well as areas of success) which arise when it comes to the practicalities of delivering healthcare which is intended to be both free and universal. The findings of the research will be vital in shaping world healthcare policies when it comes to the treatment, control and prevention of TB after the timeframe of the current Development Goals.

Based on meticulous year-long research by Samia Laokri, Olivier Weil, K Maxime Drabo, S Mathurin Dembelé, Benoît Kafando & Bruno Dujardin, the study - an abstract is provided here by the World Health Organisation - demonstrates the flaws of a generalised or sweeping analysis, starting with the "theory [that] the removal of user fees puts health services within reach of everyone, including the very poor." They warn,
In the poorer countries of the world, where most people live on less than US$ 2 per day and expenditure on health care can plunge patients and their families into extreme poverty, the removal of user fees for health is seen as a matter of real urgency. Unfortunately, this is unlikely to be enough to ensure truly universal coverage.
A full version of the report is here and I have provided my overview and analysis below. 

The study I'm focusing on, which is part of a larger project [see points seven and eight here], is based on the findings of rounds of interviews with 242 patients who tested positive for pulmonary tuberculosis across the six rural districts of Bousse, Koupela, Ouargaye, Zabre, Ziniare and Zorgho and who were enrolled in the national TB control programme. As the writers state,
The median direct costs associated with tuberculosis were estimated at 101 United States dollars (US$) per patient. These costs represented 23% of the mean annual income of a patient’s household. During the course of their care, three quarters of the interviewed patients apparently faced “catastrophic” health expenditure. 
Their analysis of the cause of this US$101 direct cost is interesting: around US$ 45 of the cost was not down to the inherent cost of the medicines or treatments themselves, but to failures in the broader health system and policies; the researchers cites access, medical consultations, out of pocket expenses, unofficial payments to medical professionals and lost wages from their day jobs for both diagnosis and treatment (or even redundancy due to repeated absence). While individual patients bore these costs by strategising. economising and accommodating within their households and negotiating or receiving community and extended-family support, this accommodation weakened their overall economic standing and jeopardised their position in the long term. There was a likelihood of established savings being used, of families being forced to decrease consumption to save money, being forced into the sale of goods or services to raise money or to take out loans to raise money. When this seemingly small monetary figure accounts for nearly a quarter of each household's income, given the generalised socio-economic context of poverty or near-poverty amongst the population studied, there are grave consequences in terms of increased social inequality and economic instability; the stigma of suffering from TB; the 'social debt' incurred by help received by family members and the wider community; and a greater improbability of proper treatment being sought, for all these reasons. The illness itself increased instability, with the researchers citing an average loss of 45 days of work lost by sufferers across the research year from 2007 to 2008. 

The 23% percentage figure of annual income cited for TB treatment costs is alarming as the threshold for a definition of "catastrophic" expenditure which represents an excessive burden on a patient or their household in the rural low-income communities in the study, is 10%. The study analysed all the types of expenses and costs, including non-medical and non-financial costs, which arose as a result of suffering, diagnosis and treatment and identified various failures and weaknesses in the system. They include necessary services that were not covered by the free treatment package (which include diagnosis by spit sample, anti TB drugs and repeat smears to determine treatment outcome) and services that were not necessary but where payment was required. The report states,
Only 2% of the patients interviewed...reported that they had received completely free tuberculosis care. 
The challenges above, as well as other failures in patient treatment (such as extended time periods required for diagnosis and repeat procedures) explain why the rates of TB detection and cure are lower than might be hoped given the MDG and the adoption of international recommendations for TB control. The researchers state that what are necessary are solutions which pull in all practitioners, "political decision-makers, managers of health programmes and health services" to develop meaningful responses and suggest a number of measures including the decentralisation of diagnosis and treatment so that patients do not have to travel, improving community care to enable early detection, help for the poorest households, supporting healthcare providers and also supporting patients not just financially but socially and psychologically through dialogue with former patients. They also call for a rigorous assessment of 'free' healthcare systems with a multilayered analysis of economic and social consequences aimed at fine-tuning policy, identifying and rectifying faults in the system, guaranteeing efficiency and helping (rather than exploiting or exacerbating the problems of) the most vulnerable.



Bidisha is a 2013 Fellow for the International Reporting Project. She is reporting on issues of global health and development. 



Thursday, 28 February 2013

Testimony and development: think globally, act locally, think locally, act globally

(c) IRC maternal health project

I recently covered Untold Stories, a major exhibition of photographs of global urban refugees and a showcase of their testimonies, produced by the International Rescue Committee and featuring images taken by photographer Andrew O’Connell. Since the exhibition closed I’ve been thinking about the placing of these images, in the sleek, double-plus height, busy spaces of King’s Cross International Station. It’s either a striking juxtaposition, stopping Paris- and Brussels-bound travellers and their consciences dead in between eating a cake from Konditor and Cook, having a salmon platter at Le Pain Quotidien and buying overpriced disposable fountain pens from Paperchase. Or it’s just more visual wallpaper, another image from the global ad era, something for the eye to skim over, barely taking in the words or registering the general purpose – tearjerking international pain campaign – before getting on a train bound for somewhere more pleasant. 

As a second generation British Indian, I’ve always baulked at coverage that makes a show of the suffering of global others. Stricken-eyed orphans, hungry looking yet still undeniably cute; survivors and victims gazing out balefully, beseechingly, next to a large-fonted list of bad things that will happen to them if you don’t sponsor them for three pounds a month; a child just about to drink from a plastic tub of brownish water; a dazed toddler gazing up from a hospital bed it wouldn’t need to be in if only the correct vaccines and immunisations had reached it in time. The testimonies are true, as is the scale of each crisis and each issue, but coverage like this reduces each featured person only to the story of their suffering. The individual, although they are made an example of, becomes generic in the telling. The adverts and coverage do not tell us about their strengths and weaknesses, their likes and dislikes, their family, their friends, their locality, their ambitions. Instead, the individuals are broken down into a demeaning, generalized narrative. We know nothing of them but their pain and are shown nothing of their own drive, their own strength and resistance. Instead we are invited to feel like the heroic saviours of the powerless:

The farmer who can’t grow and sell enough crops for her family.

The baby who’ll die by the age of 3 if he doesn’t get the right treatment.

The girl, first name only, trafficked, raped, bought, sold, impregnated, beaten, abused.

The boy stitching plimsolls by the side of the road, forced to sleep on the street.

The girl denied education, doomed to be taken and used for sexual and other manual labour.

The family whose nearest hospital is an eight mile walk away.

I sit on the Tube and cringe: is this what people in this country think of us? And by us I mean all the non-whites, the former colonised, the far-away, the different-from-them. It’s humiliating to see one’s own (historic) country and those of many others represented as backward, violently misogynistic, agonisingly poor, superstitious, class-ridden, corrupt, intractably problematic, unable to help itself. It’s embarrassing to think about the way other cultures are so often misrepresented, in Western art, culture and media, as depraved, eroticised, exoticised, criminal, subjugated, chaotic, oppressed, self-sabotaging, primitive, violent and more. And it’s easy, being bi- or multicultural, living in a city as visually diverse and mixed as London (even if, if you look at who really holds power in all sectors, the image is strongly un-diverse in terms of sex, race and class), to forget how little people know of the many different societies beyond their own national borders, how few people get under the skin of other countries through equal friendship with others, how few people speak or read other languages. The solicitations, which are meant well, are targeted at people who often know little about other countries or cultures except what they have seen on the news, what they are fed in entertainment-industry films and novels or simply what they have heard in the air – a mixture of myths, fantasies, suppositions and stereotypes which are insulting at worst and limiting at best. The adverts and campaigns often replace people’s ignorance with extreme, galling patronage. We are invited to feel for survivors and victims but not feel outraged, as we should, about the deliberate actions of the perpetrators or the extreme injustice and exploitation which underlie inequality. The help the adverts elicit is accompanied by a sense of personal smugness and cultural superiority. Yet the only way you can understand a culture and drop your own sense of superiority is to participate in it fully and as an equal, not a patron, exploiter, client or dominator.

It’s also easy to point to finger at other nations’ problems without recognizing that many of those same problems are strongly prevalent within the UK too and that the prejudices and inequalities which keep them in place are common across seemingly different cultures. Gender prejudice, gender violence, racial prejudice, racial violence, class prejudice, class violence; these are present to a greater or lesser degree in all cultures regardless of the predominant colour, religion or language of the majority of the people. The terrible consequences, in terms of opportunity, treatment and advantage, as a result of the gap between richer and poorer; the scale of sexual violence including endemic harassment, sexual exploitation and the consequent ignoring or denying of victims and excusal of perpetrators; endemic levels of women killed by current or ex partners; trafficking; labour exploitation, low pay, unstable employment and inequality; problems of hunger; problems of housing; problems of literacy. These are all issues here in the UK, as elsewhere.

And so, in the morass of pain, suffering and need, we return to the power of individual testimonies, specific case studies and concrete examples as a way of making issues which are so widescale as to be overwhelming feel real at last. Humanity needs to put names and faces to social problems; we need to attach a story to an issue; we need to be convinced emotionally and not just factually. And so there’s testimony after testimony, home-made video after witness photograph exhibition, statements, confessionals, documentaries, archives. It’s only through putting a human face onto inhumane circumstances and treatment, adding flesh and blood to advocacy and arguments, that grassroots change really happens.

There are many obstacles. In the case of sexual violence in particular there is widespread and tragic denial of the existence, reality and scale of the issue; the disbelieving, denial, punishment and ostracisation of victims; leniency, excusal and condoning of perpetrators; and a denial about the way entire cultures collude across the board in the undermining and sexual objectification of women and girls, from our extreme under-representation as speakers, leaders and experts in all areas of powerful public life to our over-representation as silent objects used to sell consumer goods from yoghurts to shampoos and the way our bodies are used, bought, sold and bartered as sources of sexual, domestic and other labour for others’ benefit; and so on and so forth, as I’ve written in a million articles a million times. Even when survivors of sexual violence are believed, people have a hard time facing the reality of the scale of the problem, the truth of the situation and its systematic, entrenched, values-based origins. They prefer to recast sexual violence as either a tragic anomaly; an inevitable consequence of war which will never change; or a private, ambiguous, personal, shadowy, domestic matter whose mysterious truth none can fathom. At the heart of all this is an absolute inability to face the reality of what perpetrators choose to do, how many of them there are, how common it is, and what that says about how much and how violently women are hated. For more on the most extreme and distressing examples of this, with a trigger warning, look at Women Under Siege.

Sometimes the resistance comes down to cultural prejudice – a feeling of not understanding and not wanting to interfere or get involved with a society which is seen wrongly as ‘other’, subject to its own laws and logic, somehow different and therefore inscrutable. And equally there is a laudable desire not to patronise. Over the last few years, as I’ve been working and writing a lot on the Middle Eastern revolutions, meeting countless female activists who have worked for changed for years, who lead demonstrations and organisations. They bemoan the western media’s obsession with the oppression of Arab women, veiling and not veiling, sexual assault and sexual harassment, as though these latter two issues are not totally endemic in the UK as well as in the Middle East, Latin America, Europe, Northern America, India and wherever else you look. The problems of the world seem to hide in open view, supported by our prejudices, our willful blindness, our excusal of perpetrators and our deep denial.

Sometimes resistance to global appeals comes down to simple apathy, selfishness, insularity or outright pessimism. People do not use their power for change, because they are convinced of their powerlessness. They think an enterprise is doomed to fail before it has begun, and so they doom it to fail with their own unwillingness, tepid support and lacklustre participation.

Yet this pessimism is misplaced. The problems of the world have not arisen by magic or by chance and are not kept in place by magic or chance. They are specific problems which can be solved in specific ways. Those who benefit from inequality, injustice and exploitation rely on the apathy of bystanders. To laugh cynically at the large scale of the problems identified for solution is to behave as though the world can only change for the worse, not the better. During the course of the year, as part of my International Reporting Project fellowship, run by Johns Hopkins University and funded by the Bill and Melinda Gates Foundation, I will be focusing on issues in support of the MillenniumDevelopment Goals for 2015. These are:

  • To end poverty and hunger
  • Universal education
  • Gender equality
  • Child Health
  • Maternal health
  • Combating HIV/AIDS
  • Environmental sustainability
  • Global partnership
Do I believe that it’s possible to save the world? Yes. If it can transform negatively it can transform positively. This requires believing survivors, fighting perpetrators, challenging preconceptions, changing society, educating the very young, supporting the weak, breaking the dominators, investing money, creating lasting infrastructures and forming organisations which are structurally and ideologically different from those created by exploiters and power-holders. To say the world cannot be saved is to give the bad guys a free pass to do exactly what they want, to make a mockery of others’ constructive efforts and to deny one’s own power to influence events. I believe that something good is better than nothing good, that speaking up is better than staying silent to protect perpetrators and that a tidal wave of change starts with the smallest ripple.

There are millions of people in the world – usually, those who have relatively little themselves – who are working and have been working tirelessly for years to transform the lives of people in their own communities. Although they are assisted by the same organisation, they do not get exhibitions in King’s Cross, major funding for their beautiful photographs or international coverage which boosts their career, enables lots more exciting international travel and promises a strong culturally legacy once their working days are done. They are not hailed as intrepid, globe-trotting heroes bearing witness, constructing powerful testimony, standing up for human rights. They have no names, or rather no cultural Name. But here they are:

  • The village women in the South Kivu province in the Democratic Republic of Congo forming groups called village savings and loan associations (VSLAs). The women members put their small household earnings toward the group’s broader goals. When there’s enough cash in the box, a member can take out a loan to start her own business — like a tailoring shop, the purchase of a small plot of land to farm and raise animals. When the business makes money she begins to repay that loan back into the cash box to fund another woman’s ideas.
  • The 30 new health facilities and 2,500 newly trained community health workers supported by the IRC in South Sudan, where the country’s decades long civil war has left the region without a functioning healthcare system and few trained medical personnel. Currently, more than 2,000 out of every 100,000 pregnant women in the new nation die during childbirth.
  • The necessity of bringing healthcare closer to remote communities by enabling trained community health workers to travel with families as they migrate. For example in Turkana, Kenya, is one of the world’s poorest regions, frequent droughts have left inhabitants dependent on food aid. Malnutrition rates are estimated to be around 22 per cent, leaving children too weak to fight off illness. Consequently, many children die from preventable or treatable illnesses such as fever, malaria and diarrhoea. With about 80%of people being nomadic, many families find accessing healthcare difficult due to their mobile lifestyle. These problems are compounded by a severe shortage of facilities and qualified health professionals. 
  • The strengthening of strained healthcare facilities in Syria’s neighbouring countries, like the 2 new health centres in the cities of Ramtha and Mafraq in Jordan, to help the million-plus people fleeing the violence in Syria. As IRC emergency response coordinator Tom McNelly explains, “These people crossed the border with nothing but their clothes. They have no money to pay for treatment or medicine - and we supply both, at no cost to them.”


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Bidisha is a 2013 Fellow for the International Reporting Project. She is reporting on issues of global health and development.