Shopping for their lives

When David Cowley found out he had hepatitis C in 2004, the only treatment available was a daily painful injection with a low chance of success and potentially devastating side-effects such as blindness.

Hepatitis C, which primarily affects the liver, can initially be symptom-free or manifest mild symptoms. For Cowley it was six years later, in 2010, that his illness started taking hold, forcing the then 52-year-old from Cardiff, Wales, to quit his printing business. The fatigue, brain fog and cramps were severe. He didn’t want to take the current treatment so he spent most of his waking time researching new treatments, while simultaneously trying to cope with his symptoms.

When he found out Gilead had developed a highly effective, tolerable, oral 12-week treatment called sofosbuvir (sold under the brand name Sovaldi), which was approved in the US in 2013 (and then Europe in 2014), he was ecstatic. Until he saw its price tag: £35,000 ($45,100) for 84 pills.

But later, in 2013, Cowley’s luck changed: he was one of a handful from the UK to be accepted into a clinical trial for Gilead’s second hepatitis C drug that was soon to be released on the market: Harvoni. The drug is a combination of sofosbuvir and ledipasvir for patients with genotype 1 and 4 – there are six types of hepatitis C viruses which are grouped by their genetic make-up.

At £39,000 ($50,250) for a course of treatment, its retail price was even higher than Sovaldi’s.

Cowley was cured in 12 weeks.

‘I thought the drugs were fantastic and that everybody needs to have this,’ he said. So he started working to do just that.

Held hostage

An estimated 80 million people worldwide are infected by chronic hepatitis C, 215,000 of whom live in the UK. According to the World Health Organization, the disease kills almost 700,000 every year.

The virus is transmitted through blood and is closely associated with the use of injectable drugs – Cowley was a heroin addict for seven years.

While the development of a treatment with cure rates above 95 per cent brought hope to millions, the exorbitant price tag meant few could access it and had some protesters giving Gilead a new nickname – Killead.

In 2015, only one per cent of people with hepatitis C received treatment, a third of whom actually received old and less effective treatment.

A year previously Gilead had issued a voluntary license to India to produce generic versions of the drugs, so governments in 101 poorer countries including Malawi and Nepal could buy the treatment. The reality remains that many countries still cannot afford to spend even the much lower $900 per patient cost of the generics, according to Rohit Malpani, director of policy and analysis for Médecins Sans Frontières’ (MSF) Access Campaign. Moreover, the voluntary license excludes several middle-income countries with a high hepatitis C prevalence including Brazil, China and Ukraine.

Meanwhile, the prohibitive cost in wealthy countries means that both public and private insurers ration the drugs.

‘If you go to the hospital with a fractured leg they don’t tell you go away and to come back when it’s properly broken’

In the UK, as in other parts of Europe and the US, access to the drugs is based on liver disease stage. In other words, your liver function needs to worsen before you can access the drugs – exactly what the drugs work to prevent.

‘If you go to the hospital with a fractured leg they don’t tell you go away and to come back when it’s properly broken,’ Cowley said. ‘Simply because of the cost, people are being told they can’t have the treatment.’

While concerns around the high price of drugs was previously an issue confined to the Global South, it is now just as much of an issue in wealthy nations as Big Pharma’s grip on power and its domination of the market has increased over the past 15 years.

The situation raises numerous critical questions: how can a pharmaceutical company like Gilead hold the wealthiest of governments hostage using patent legislation? Why do the medicines cost so much? And what are the solutions?

Once a patent is granted for a drug in a country, it gives the patent holder the exclusive right to sell and produce the drug. But, as Malpani explains, exclusivity isn’t watertight – every government has the flexibility to overcome patent protection if it feels the drug price is too high.

‘They can produce low-cost generic medicines but this has been only done with AIDS drugs because HIV is a political disease as much as an infectious disease,’ he said.

‘In many respects countries in Europe and the US have their hands tied because through their own decisions they’ve made it difficult for themselves to take measures to negotiate effectively to bring down the cost of drugs and overcome generic medicine restrictions. That said, we don’t think that Gilead deserves patent protection for these drugs.’

Ellen ‘t Hoen, founder of the Medicines Patent Pool, an organization that works to increase access to treatment for HIV, hepatitis C and tuberculosis, said the rationing of drugs was ‘completely unacceptable’.

‘I think governments are irresponsible, given that today there are lower-priced generic medicines available,’ she said.

‘Governments shouldn’t be able to hide behind the fact there’s a patent available in their country. Proven effective medication needs to be affordable and available based on human rights.’

Sharing the miracle

When news of Gilead’s issuance of a voluntary license to India in 2014 reached Greg Jefferys in Tasmania, he jumped on a plane to the south-Indian city of Chennai.

Earlier that year the then 60-year-old had found out he was infected with hepatitis C. At the time Australia had not yet approved the use of Gilead’s new drugs but he knew they were out of his reach anyway.

‘It’s a miraculous discovery. It’s a great pity it’s been exploited so heavily for profit and is being denied to so many’

Instead, he went to India and purchased the 12-week course of treatment for $900 – a fraction of the price they were being sold for in wealthy countries. The 12-week supply was exactly what Australia’s regulatory body, the Therapeutic Goods Administration, would allow him to bring home under its Personal Importation Scheme.

Eleven days into his treatment, his liver enzymes had returned to normal levels and after 14 weeks, his viral load was undetectable.

‘It’s a miraculous discovery. It’s just a great pity it’s been exploited so heavily for profit and is being denied to so many people,’ he said.

Jefferys blogged about his experience and overnight attracted the attention of hundreds of hepatitis C suffers, desperate to access drugs.

He wanted to help. So he decided to start facilitating people’s trips to India or connecting them with trusted pharmaceutical suppliers who could send generic versions of Harvoni and Sovaldi to their home countries, now along with Epclusa, a newer drug that treats all genotypes of hepatitis C and was released last year.

While countries including the UK and US allow the importation of a three-month supply of medicine with certain regulations, others such as Canada and parts of Europe ban it altogether.

‘From a legal point of view, I’m just facilitating the whole thing,’ he said. ‘But I’m perfectly happy to break laws and get people treatment – you’re talking about lives.’

Cowley had been following Jefferys’ blog and was inspired to set up his own buyers’ club from his home in 2015.

He set up a Facebook group and just like Jefferys, along with people in other countries including Russia, Belarus, Romania and Spain, organizes for generic medicines from India to be sent to people’s doorsteps.

So how does it work? Well, you send Cowley or Jefferys $1,000 along with an identification form and a prescription from a medical practitioner. If you can’t get a prescription, then a medical report showing you have hepatitis C will suffice. Within 10 days you receive your generic medicines shipped from India. Both men ask for a fee for their service but it’s optional and depends on the individual’s circumstances – neither want those who are poor or cash-strapped to miss out.

‘I’m perfectly happy to break laws and get people treatment – you’re talking about lives’

But what if you live in a country that bans personal importation? This is something Cowley is reluctant to speak about on the record.

‘The reason I’m doing what I’m doing is that I’m absolutely outraged at the price,’ he said.

‘I don’t hide what I’m doing – it’s facilitating people getting the right medicine so they don’t get ripped off. We don’t do it for the money, we do it because someone has to.’

Waiting for the breakthrough

Narcyz Ghinea, a researcher from the University of Sydney whose work focuses on medicines’ governance, said the increasing popularity of personal importation – which is also happening for other drugs – could change the way access to medicines is viewed.

‘It’s a very disruptive innovation,’ he said. ‘If you can buy medicines online that aren’t approved in your own country, then what is the role of the regulator? The government doesn’t approve it – so what?’

He said personal importation could be a useful negotiating tool to bring down the price of medicines but feels it could simultaneously discourage innovation.

Gilead’s stated concern with buyers’ clubs is counterfeit drugs. A spokesperson said the source and quality of hepatitis C medicines secured through buyers’ clubs are unknown. But given that Cowley and Jefferys source their medicines from Gilead-licensed pharmaceutical companies, this concern seems unwarranted. In fact, a 2016 study in Australia showed the same treatment outcomes among those who acquired treatment online and those using branded medicine.

There is no justification for the price Gilead is asking for the medicines. It’s absolute nonsense

Switzerland and Italy recently took steps to create legal means for people to travel to India and purchase generic medicines, with some insurers even footing some of the medicines’ cost.

The prohibitive cost of hepatitis C treatment highlights a global challenge: how to finance the development of affordable new medicines.

‘The more fundamental issue is, how are we going to pay for research and development? How are we going to continue to finance drugs and vaccines?’ Malpani said.

While the pharmaceutical industry justifies charging high prices by playing up its investment in research and development, critics say innovation can also come from the public domain; indeed, that industry often builds on publicly-funded research. But even the public domain is under threat with funding constraints in areas such as HIV prevention.

‘The pharmaceutical industry has become powerful globally and negotiating with [it] is very difficult,’ said ‘t Hoen.

‘Ultimately how we finance the development of new medicines is where the change will have to come from.’

For now, Cowley remains tied to his computer 18 hours a day, with no end in sight.

‘I might get into trouble for this but fundamentally it doesn’t matter,’ he said.

‘There are enough good cheap medicines out there to solve the problem of hepatitis C. There is no justification for the price Gilead is asking for the medicines. It’s absolute nonsense.’

For their own good

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Caged life: a man at the All Nations centre in Myitkyina, where new admissions are often locked in cages during the initial period of their withdrawal. © Martin Bader

Electric-green paddy fields and dark-brown thatched huts line the unpaved, pot-holed road to the outskirts of Myitkyina, the capital of Kachin, Burma’s northernmost state.

The high fences and barbed wire outside the sprawling block of land where the red tuk tuk stops are in stark contrast to the cows in the neighbouring fields and the children playing in the monsoon rain.

A large cross and biblical sayings decorate the interior of the Rebirth Rehab Centre – a Baptist-run rehabilitation centre for drug addicts – which appears at first glance to be a well-run, clean institution.

But behind the shared dormitories and mess hall is a dark mosquito-infested hut crammed with about a dozen skinny men with bloodshot eyes experiencing heroin withdrawal. They lie shirtless on the timber floor, trying to find some respite from the damp, humid air.

One man in particular sticks out. His legs are chained to the floor: punishment for smoking at the centre, which is banned.

After addicts are brought here by family members or anti-drug vigilantes, they are locked in the ‘detox room’ for days or even weeks, depending on the severity of their withdrawal symptoms. They have to relieve themselves in the corner and are not allowed out until staff decide they are ready.

‘I’ve been here for three days and I can’t sleep. There are too many mosquitos,’ said a 35-year-old user who wished to remain anonymous because of the stigma around drug addiction in Burma. ‘I’m fed up using drugs, I want to be clean.’

While the conditions are primitive compared to Western standards, for many it’s their only option for survival.

Every family has one

Violence has plagued Kachin State, which borders China to the north and east, and Shan State to the south, since the country gained independence from the British in 1948.

The Kachin, a Christian ethnic group in a Buddhist-majority country, have been fighting the government for their right to self-rule. But, in 2011, after 17 years of peace between rebels and the government, the long-standing ceasefire collapsed and fighting resumed, displacing an estimated 100,000.

Burma is the second-largest opium producer in the world. In Kachin and Shan States, the easy availability of cheap, strong heroin has helped fuel an addiction crisis that is not only destroying communities and economic development, but bringing with it skyrocketing rates of HIV and Hepatitis C.

Caged life: a man at the All Nations centre in Myitkyina, where new admissions are often locked in cages during the initial period of their withdrawal.

Martin Bader

Evidence of addiction is everywhere in Myitkyina, a dusty town along the Ayeyarwaddy River, filled with cheap Chinese goods and jobless youths. Used needles are strewn across the train tracks that go through the town, while signs hang in family-run restaurants pleading against drug use. A heroin hit costs just 60 US cents and children as young as 12 are users.

‘Every family has a drug user. It affects everyone,’ said Dr Tun Tun, the Myitkyina area co-ordinator for the Substance Abuse Research Association (SARA) – one of the few NGOs in the state that run harm-reduction programmes. ‘People need to realize it’s our problem, not the government’s.’

Strong arm tactics

In 1999, Burma launched a 15-year plan to stamp out poppy cultivation and, up to a decade ago, it looked like the nation was on track. But that deadline has been extended to 2019 following the tripling of poppy cultivation since 2006; it has reached almost 60,700 hectares, according to the United Nations Office on Drugs and Crime (UNODC). (Whether Aung San Suu Kyi’s freely elected new government – the first after more than half a century of repressive military rule – will aim for the 2019 target or not remains to be seen.)

Moreover, UNODC’s Southeast Asia Opium Survey in 2014 found that opium use had more than doubled and the use of heroin and methamphetamines more than tripled in poppy-growing areas of northern Burma between 2012 and 2014.

Tom Kramer, a researcher at the Transnational Institute who focuses on Burma’s drug market, said ongoing conflict and poverty, and demand for opiates in the region, particularly from China, were important drivers of opium cultivation.

‘Given all these factors, it’s unlikely opium cultivation will disappear and Burma will become opium-free any time soon,’ he said.

For impoverished ethnic communities who grow opium as a cash crop, it’s a solution to their hardships, not a problem – allowing them to put food on the table and meet other basic needs.

‘Drug use has become a kind of genocide. There is no rule of law’

Kramer described Burma’s drug policies in areas affected by decades of war, which focus on arresting and beating drug users and destroying opium fields, as ‘repressive’.

‘The drug crisis in Kachin State is an urgent warning of the failures of anti-narcotic policies in the past and a wake-up call for inclusive, informed actions that are in partnership with the local people in the future,’ he said.

‘What will be needed at the community level in the coming years is the provision of effective treatment services for drug users which are voluntary, based on needs, and respect human rights. As most opium-cultivating communities grow poppies as a livelihood strategy, the development of their communities should be prioritized, rather than arresting individuals and destroying their livelihoods.’

The repressive policies he refers to include the tactics of Pat Jasan, an anti-drug squad that was founded in 2014. Sick and tired of witnessing the impact that drug addiction was having on locals, members of the Kachin Baptist Convention banded together to launch their own ‘war on drugs’. Dressed in military-style uniforms and armed with batons and sticks, Pat Jasan members, allegedly numbering in the tens of thousands, publicly shame and beat drug users before removing them from their homes and putting them into one of 12 faith-based rehabilitation centres. Their destruction of poppy fields by force has led to open conflict with opium farmers and local militia groups.

Aung Gun, the Myitkyina head of Pat Jasan, calls it ‘a race against time to protect ethnicities and fight against the drug community. Drug use has become a kind of genocide.’

While their work has been praised for bringing the issue of addiction into the limelight, most drug experts are against their tactics, which violate basic human rights.

‘There is no rule of law. If farmers keep growing poppies, we will punish them,’ Aung Gun said, unfazed by the impact the destruction would have on people’s livelihoods.

Troels Vester, country manager of UNODC in Burma, believes providing farmers with an alternative competitive income, along with ceasing conflict, is the answer. UNODC is working with the government in Shan State to replace opium poppies with coffee. It’s estimated that by 2018 more than 1,300 hectares would have been converted to coffee and another 800 hectares reforested. All in all, $150 million is needed to change all opium cultivation in the country into coffee production, according to Vester.

‘There is a very close relationship between peace and illicit narcotics in Burma. On the one hand, conflict fuels illicit drugs; on the other, illicit drugs fuel conflict. We do not believe it is possible to have major progress in one area without progress in the other,’ he added.

Harm reduction

In Myitkyina, Naing Myo Htun and Aung Mai, outreach workers from SARA, jump on their motorbikes armed with gloves, clean needles and a safe needle-disposal box. Their mission: to pick up used needles and replace them with new, clean ones in a bid to reduce blood-borne illnesses. It is Burma’s version of other countries’ safe injecting rooms and needle-exchange programmes – part of the harm-reduction approach which focuses on preventing harm, rather than preventing drug use itself.

The men make five stops at popular injecting sites, from secret alleyways to grassy spots along the river littered with used needles and condoms.

‘I don’t let them leave. If no-one comes to pick them up at the end of the programme, it’s safer they stay here’

Back at one of SARA’s drop-in centres, men of all ages lie around on the floor chatting and listening to music. It’s here that drug users are able to come to hang out without being judged, but, more importantly, services including HIV testing, counselling and doctor’s referrals for antiretroviral therapy and suspected TB cases are available.

According to Dr Tun Tun, 30 per cent of injecting drug users in Kachin are HIV positive and 70 per cent have Hepatitis C.

Easy does it: a SARA community outreach worker collects used needles and drug paraphernalia from a popular shooting-up site.

Martin Bader

Despite the alarming figures, the harm-reduction approach is at odds with that of the faith-based rehabilitation centres which rely on teachings of the Bible and forced withdrawal without the support of medicines such as methadone.

‘It’s hard for the community to understand needle exchange. Because we come from a public-health approach, we want to show the data and show what we can achieve,’ said Tun Tun.

He explained that while he was trying to work with the centres, attitudes on how to approach drug addiction were ‘very different’, which made it ‘difficult to understand one another’.

Last year, the organization distributed about a million needles across the six Kachin townships where it has drop-in centres. If an addict wants to quit and needs assistance, SARA refers them to a government-run methadone programme.

For Tun Tun, the methadone approach to combating drug addiction is far better than forced withdrawal, which often means being locked in a cage.

'A gift from God'

Across town, Lulu Din is preparing a herbal concoction she administers to drug addicts.

She’s the founder of All Nations, another Christian-run rehabilitation centre in town that opened its doors in 2009 – and the only one that accepts women.

According to locals, drug addiction is also pervasive among women, who often resort to prostitution to fund their habit but are shrouded in secrecy because of stigma.

‘I heal drug users by saying that the power of drugs is nothing in front of God,’ she said.

‘By caring for people and providing treatment, it means users believe us, whatever we say.’

Din gives her 60 patients a herbal medicinal drink, which is ‘a gift from God’, three times a day and showers them frequently in salty water.

She claims that it takes drug addicts two weeks to get clean with this method before they proceed onto either a three-month rehabilitation programme focused on Bible teachings or a two-year programme for those who want to end up volunteering at the centre.

‘I don’t let them leave. If no-one comes to pick them up at the end of the programme, it’s safer they stay here,’ she said.

Addicts who also suffer from mental-health problems are locked in small timber cages at night for fear they may attack other patients.

Farmer Mau Nu from neighbouring Shan State arrived at All Nations three weeks ago after being picked up by Pat Jasan. For 20 years he smoked opium and injected heroin.

‘Drugs are so easy to find. In the beginning, my friends told me to try it once and I got addicted. I was stuck in it and haven’t had a chance to see my mother for more than 20 years,’ he said.

‘I want to go home but God has trapped me in this camp,’ he added dejectedly.

Sophie Cousins is a health journalist based in South Asia with a specific focus on India, Nepal and Burma.

Kurdish boys killed as tensions rise in Cizre

Kurdish refugee

With media attention focused on the fighting in Kobane, ethnic tensions are rising in Cizre, in southeast Turkey near the Syrian border and Kurds there are facing renewed violence. Jordi Bernabeu Farrús under a Creative Commons Licence

‘Please help me find who killed my son,’ Ayse Kazanhan sobbed, sitting on the brightly carpeted living room floor, shaking back and forth.

‘My son didn’t do anything. I can’t understand why they did this. He was a very special boy.’

Last month, 12-year-old Nihat Kazanhan was fatally shot by unknown gunmen in the predominantly Kurdish city of Cizre, in southeastern Turkey, near the Iraqi border.

He was one of at least six people – mostly youths – who have been shot dead since late December last year.

His death was the latest in a string of tragedies which threaten to undermine the fragile peace process between the Turkish state and the Kurdish Workers’ Party (PKK), the Turkish-Kurdish guerrilla group designated as a terrorist organization by the US and European Union because of its three-decade insurgency for self-rule.

On 14 January, hours before Nihat was killed, Abdullah Ocalan, the imprisoned leader of the PKK, called for calm in Cizre, four months since the latest crisis began. He warned his loyal followers not to fuel a conflict that has already claimed tens of thousands of lives.

Later that day, Nihat was playing on the street on the outskirts of the city near his family’s home with six other children when he was allegedly shot by police who were on patrol, according to witnesses and family members.

He immediately fell to the ground before a friend put him in a car and rushed him to hospital. Activists, pro-Kurdish media and witnesses also claimed the police fired teargas and plastic bullets that hit the car Nihat was in.

‘The police tried to stop them from getting to the hospital. Another police officer came and tried to get rid of the evidence,’ Mehmet Emin Kazanhan, Nihat’s father, claimed.

‘If there wasn’t police present, we believe they would have just made him disappear. When we watch the news and it says the police didn’t kill our boy, that really hurts us.’

Nihat made it to hospital alive but died 10 minutes later. He was allegedly shot in the back of the head with a five-centimetre plastic bullet.

He was one of nine children and was in sixth grade; he loved to play outside with friends. However, the last couple of months of Nihat’s life had been marred by fear: he had stayed home from school for the last 40 days, scared of police and security forces.

‘Last year my son and some other boys were out playing when the police came and took them to the police station,’ Mehmet recalled. ‘The police held a knife to his throat and told him they’d cut his penis off.’

Turkish Prime Minister Ahmet Davutoglu insisted Turkish security forces were not behind the child’s death – that they had fired neither bullets nor teargas. But at the end of January, in an unprecedented move, a police officer was arrested as part of the investigation into Nihat’s death. But for the family, the pain is far from over.

‘[It wasn’t just] one police officer did this. Who sent them? Who told them to kill my son? Why did the government and police say they didn’t kill my son? We want to know everything,’ Mehmet insisted.‘Nothing is going to change, but we want to find out who did this.’

As in the worst days

Cizre, in the Sirnak province, has historically experienced high levels of state violence and support for the outlawed PKK.

As in the worst days of violence in the 1990s, when clashes between militants and police were frequent, locals are rushing home before darkness falls and ditches have been dug around neighbourhoods to prevent security forces from entering.

The crisis here began in October when protests erupted in the southeast over the government’s refusal to aid the Kurds defending Kobane.

At least 35 people lost their lives in the worst outbreak of violence since Abdullah Ocalan announced a ceasefire in 2013. While many believe the jailed leader may call an end to his party’s armed struggle next month, others are fearful that the ongoing unrest in Cizre could unravel the peace process.

While Kobane has since been liberated after a four-month struggle, others here believe Cizre could in fact be the next Kobane.

‘I went to the hospital, there were people everywhere. When I asked where my boy was, they took me to the morgue’

‘They are worse than ISIS – they kill children,’ one resident said. ‘They only kill Kurdish people.’

A week before Nihat was killed, another local, 14-year-old Umit Kurt, was shot dead as he walked home from work. Umit’s father, Abdullah Kurt, speaks about his son with pride and passion.

Hanging on the wall of the family’s living room is a large photograph of Umit, right next to a picture of Ocalan.

‘He was a very lively boy. He found a job as an apprentice painter and everyone told me what a lovely boy he was – working and looking after the family,’ Abdullah said.

‘We were eating dinner when someone knocked at the door. My son answered the door and told us Umit was shot – that he was gone. I went to the hospital, there were people everywhere. When I asked where my boy was, they took me to the morgue. They pulled the sheet back and when I saw him, I knew it was Umit.’

Umit and another young boy left a construction site not far from the family’s home on the evening of 6 January. The boys went off in different directions and Umit continued walking alone down a dark street.

Earlier that day, residents had refilled a trench that barred entrance to Umit’s neighbourhood but less than an hour later, several armoured police vehicles entered, according to residents.

Gunfire and teargas echoed throughout the streets; Umit was hit from the back, a bullet piercing him right near his heart. It killed him instantly.

‘There’s only one word: Kurdish. It’s because we’re Kurdish,’ Abdullah said angrily. ‘The Kurdish people want real peace and freedom. My son never wanted to fight. If this violence continues, Cizre is going to be worse than Kobane.’

Early last month, Cizre Public Prosecution Office decided to classify any state findings into Umit’s death, with no explanation, leaving more unanswered questions. But for the family and other residents, the killings are no secret or surprise – they will just be added to the list of unsolved murders.

‘Until I die, I will work on finding out who is responsible for my son’s death,’ promised Abdullah.

Syrian child labourers exploited in Jordan and Lebanon

2013-09-18-syria.jpg

under a Creative Commons Licence

Almost two million Syrian children have been forced out of school, since the last academic year.

As the war continues well into its third year, more than one million children are now refugees, having fled Syria with little more than a glimmer of hope that they may one day be able to return.

While refugees are spread throughout Syria’s borders and beyond, there is a reoccurring theme for all: children are not continuing their education; they are working.

To cope with poverty and harsh living conditions, families have had to send their children to work.

How can families balance the importance of a child’s education with their economic needs?

The Jordanian government estimates that around 30,000 Syrian children are working in the country, despite the fact it is illegal for a child under 16 to work there.

Nick Grisewood, chief technical adviser of the International Labour Organisation (ILO) project Moving Towards a Child Labour-Free Jordan, says the situation is deteriorating.

‘In 18 months, the population of child labourers in Jordan has at least doubled. Normally a child labour population develops over a much longer period of time and in the context whereby you’re developing policies and programmes that will address the issue.’

‘It is a big, big problem. It is probably the biggest problem affecting children at the moment in Jordan.’ Children are working in various industries such as agriculture, construction, hospitality and domestic work. Exploitation is widespread.

‘There is clear evidence of Syrians being paid well below the minimum wage, if being paid at all. They are working longer hours, working without appropriate safety equipment and working for less,’ Grisewood says.

But as NGOs scramble to deal with the issue, questions remain. Why are so many children working? Given the poor set of options available, are we suggesting that they do not work? How can families balance the importance of a child’s education with their economic needs?

‘You have to take in the poverty aspect, education aspect and cultural aspect to understand the situation,’ Grisewoood says. ‘Child labour is tolerated more in Syria than it is in Jordan. Humanitarian organisations have been focusing on emergency services while Syrians are having to put food on the table.’

However, there have been attempts to curb child labour, particularly in Zaatari Refugee Camp. ‘We are quite strict on monitoring child labour in Zaatari camp,’ says Michele Servadei, Jordan’s Deputy Country Representative for UNICEF.

‘Back to school’ campaigns are enjoying some success. ‘There is a better ability to monitor the situation [in the camp]. Our main concern is in host communities.’

It is believed around two-thirds of Syrian school-aged children in Jordan are not receiving any education. Of the 30,000 school-aged children who live in the camp, 12,000 are registered for school. ‘There is a lot of pressure in host communities,’ Servadei says.

‘In many cases there is no breadwinner for the family and they have rent to pay and food to put on the table. We need much more support for the children to get out of work and also to ensure the family gets the support it needs.’

Elsewhere, one common practice that has been successful in reducing child labour is a cash transfer system, which is used throughout Latin America. The scheme aims to replace the income lost by the child ceasing work. A child’s allowance is paid to their family on the condition that they can prove their child of school age is enrolled in school and attending classes.

Lebanon is home to more than 350,000 Syrian refugee children, up to 70,000 of whom are thought to be working.

UNICEF carried out a pilot project earlier this year involving 30 children, paying out $25 per child, per month. Working Syrian children were identified through the Islamic Charitable Association who would contact their families and propose the ‘rent assistance’ cash entitlement.

‘So, you might have the funding to the cash transfer programme for 12 months, but then what? The Bolsa Familia (social welfare program of the Brazilian government) is funded by the state and is a national protection system. But with the refugees, the funding is not guaranteed, so if it runs out next year, what happens then? In all likelihood the children will leave school and go back to work.’

In Lebanon, the problem is more pronounced. It’s home to more than 350,000 Syrian refugee children, up to 70,000 of whom are thought to be working.

Roberta Russo, the UN’s refugee agency spokesperson in Lebanon, says working conditions are usually deplorable. They are concerned about physical safety, exploitation and sexual and physical violence. The UNHCR does not have the resources to cope with their needs.

‘This is all happening in a very challenging situation for the Jordanian government who are obviously struggling to provide services, not only for the Syrians, but also to ensure that their citizens continue to get the level of good quality public services they’ve enjoyed up until now,’ Grisewood says.

Both the ILO and UNCIEF believe that encouraging children to attend school at the grassroots level and providing more support to families is crucial in tackling the issue.

‘Enrolment figures are one thing but the dropout figures are becoming a little bit alarming now,’ Grisewood says.

‘Much more attention needs to be placed on the child and we need to ensure the family gets the support it needs,’ adds Servadei.

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