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Silence, stigma and unaffordable drugs: the Kenyan woman finding sickle cell solutions | Global development

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For Lea Kilenga, life seemed normal until a new boy at her school encouraged other children not to sit next to her. The incident was her first realisation that there was a stigma to living with sickle cell disease.

Like her two sisters, Kilenga was diagnosed with the genetic blood condition in early childhood. The disease changes the shape of red blood cells from round to crescent-shaped. These cells then stick together, causing blood clots, intense pain and anaemia. The condition mainly affects people of African or Caribbean heritage.

Lea Kilenga, the founder and executive director of Africa Sickle Cell Organization.
Kilenga has since become a successful advocate for the disease in Kenya, where nearly 14,000 children are born with the condition every year. Photograph: Koyanga Bey/Courtesy of Lea Kilenga

Because Kilenga wasn’t the only one in her family dealing with “sleepless nights and night-long cries”, she thought “taking daily medicine, seeing the doctor every two weeks and undergoing routine blood transfusions were all normal for every child”.

“Until the day a boy in my class, who was new, mentioned that I was peculiar and contagious,” says Kilenga, 33. “Despite efforts to make myself seem not so different, I couldn’t hide my jaundice and distended stomach and skinny body. Many of my classmates bought into the narrative, and soon no one wanted to associate with me, sit with me or touch me. I didn’t go to school for three months after this.”

Her self-esteem bruised, she went through a period of “destructive behaviour” and was admitted to hospital multiple times with alcohol and drug overdoses. She managed to turn herself around in university.

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A common condition

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The human toll of non-communicable diseases (NCDs) is huge and rising. These illnesses end the lives of approximately 41 million of the 56 million people who die every year – and three quarters of them are in the developing world.

NCDs are simply that; unlike, say, a virus, you can’t catch them. Instead, they are caused by a combination of genetic, physiological, environmental and behavioural factors. The main types are cancers, chronic respiratory illnesses, diabetes and cardiovascular disease – heart attacks and stroke. Approximately 80% are preventable, and all are on the rise, spreading inexorably around the world as ageing populations and lifestyles pushed by economic growth and urbanisation make being unhealthy a global phenomenon.

NCDs, once seen as illnesses of the wealthy, now have a grip on the poor. Disease, disability and death are perfectly designed to create and widen inequality – and being poor makes it less likely you will be diagnosed accurately or treated.

Investment in tackling these common and chronic conditions that kill 71% of us is incredibly low, while the cost to families, economies and communities is staggeringly high.

In low-income countries NCDs – typically slow and debilitating illnesses – are seeing a fraction of the money needed being invested or donated. Attention remains focused on the threats from communicable diseases, yet cancer death rates have long sped past the death toll from malaria, TB and HIV/Aids combined.

‘A common condition’ is a new Guardian series reporting on NCDs in the developing world: their prevalence, the solutions, the causes and consequences, telling the stories of people living with these illnesses.

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Kilenga has become a successful advocate for those living with the disease in Kenya, where nearly 14,000 children are born with the condition every year. Named Kenya’s SCD champion by the ministry of health and NCD Alliance Kenya in 2016, her work began two years before with a photography project “to prove there were more of us”. She photographed 400 people.

“I was inspired by the stories and the people living with SCD – both patients and caregivers. It was a silent disease in that no one spoke about it for fear of stigma,” she says.

Half of the people Kilenga met had no access to pain medication, even though, as she says, “pain is universal and relative”.

“Everyone has pain to varying degrees, but not everyone will understand your pain unless they experience it to the level you do.”

From Lea Kilenga’s 10003 Warrior Project.
From Lea Kilenga’s 10003 Warrior Project. Photograph: Courtesy of Lea Kilenga

The drug hydroxyurea, commonly used to prevent sickle-shaped blood cells from forming, was approved for treatment in Kenya in the past decade and is the most affordable option to manage the symptoms, although “it does not work for everyone and the term ‘affordable’ is a stretch”, says Kilenga.

Only 5% of the people she photographed had seen a health professional, and most had received multiple misdiagnoses.

Kilenga learned how “people with sickle cell, especially those in rural areas, largely self-medicated with herbs and traditional remedies due to lack of access to sickle cell care”.

Her discoveries contributed to the establishment of national SCD care guidelines. Most children with the severest form do not survive beyond the age of five. Kilenga’s sister died in childhood.

In 2017, Kilenga set up the Africa Sickle Cell Organisation to raise awareness and get better care for patients in resource poor, high burden areas, such as the coastal city of Taita-Taveta, where Kilenga lives.

From Lea Kilenga’s 10003 Warrior Project.
From Lea Kilenga’s 10003 Warrior Project. Photograph: Courtesy of Lea Kilenga

Manjusha Chatterjee, from NCD Alliance, called Kilenga a trailblazer.

“Lea has championed the destigmatisation of her condition and NCDs more broadly to ensure more awareness of rarer NCDs and tackle the social taboos surrounding them.”

Painful sickle cell episodes affected her more in her teens and 20s, but Kilenga can sometimes find herself in the emergency department when they strike, needing strong pain relief.

Her vision is to make sickle cell disease a global health priority. “My message to people with sickle cell is there’s no saviour coming. We’ve had 100-plus years to wait for them, they have not shown up to make significant change for us. So we must make this change for ourselves and others like us.”

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The Netherlands: Nicaragua’s Daniel Ortega escalates diplomatic crisis with US and Europe | International

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Nicaraguan President Daniel Ortega.
Nicaraguan President Daniel Ortega.JAIRO CAJINA (AFP)

Nicaraguan President Daniel Ortega has decided to break ties with the Netherlands in what is the latest diplomatic feud to be sparked by the former guerilla. The Nicaraguan Foreign Ministry said in a statement on Friday that it had severed all diplomatic ties with the European country because it “offended and keeps offending Nicaraguan families.”

The decision to break ties was made after the Dutch ambassador for Central America, Christine Pirenne, informed the Nicaraguan government that the Netherlands would not be funding a $21.5 million hospital promised long ago. The news outraged Ortega, who accused the ambassador of treating Nicaragua as if it were “a Dutch colony.”

“Those who come to disrespect our people, our homeland, they should not appear again in Nicaragua. And we do not want relations with that interventionist government,” he said during his speech on Friday, which marked the 43rd anniversary of the founding of Nicaragua’s repressive National Police. “We [the Sandinista government] continue to open hospitals, even when we are met with human misery. The human misery of a European country, the Netherlands!” he added.

Diplomatic sources told EL PAÍS that the Netherlands had suspended the hospital project due to the “mishandling of funds, lack of transparency, and the serious human rights situation in Nicaragua.”

“The Netherlands regrets the disproportionate decision by Nicaragua to break off diplomatic relations. We take a firm stand on the worsening democratic structures and human rights violations in Nicaragua,” Dutch Foreign Minister Wopke Hoekstra said via Twitter on Saturday. “Other countries have also noticed difficulties in maintaining an open dialogue with Nicaragua. We will discuss our next steps with the EU.”

The clash with the Netherlands followed a week of heightened tensions with the European Union and the United States.

On Friday, Nicaragua’s Vice President Rosario Murillo, the wife of Ortega, also announced that the Central American country would not accept the new US-appointed ambassador Hugo Rodriguez as its representative in Managua. Ortega initially signed off on the appointment, but withdrew his support in July after Rodriguez told the US Senate Foreign Relations Committee that he would continue to advocate for an end of human rights violations in Nicaragua.

“The United States has spoken out against these abuses, and, if confirmed [as ambassador], I will continue to do so, not because we have any intention to determine Nicaragua’s internal affairs, but because it is our commitment under the Inter-American Charter, which both the United States and Nicaragua signed in 2001,” Rodriguez told the committee.

Despite Nicaragua’s objections, the Joe Biden administration appointed Rodriguez as ambassador on Thursday. Ortega railed against the decision during his speech to police forces. “The candidate for ambassador to Nicaragua appeared before the Senate, and what did he do? He insulted and disrespected us,” he said on Friday. “So we immediately said ‘get out, get out and stay out, and he can continue yelling whatever he likes out there, but here in our country, our flag is respected.’”

On Thursday, in another speech, Ortega attacked the Vatican, Chilean President Gabriel Boric and Brian Nichols, White House Assistant Secretary of State for Western Hemisphere Affairs, who he described as a “poor Black man” with a “bulldog face.” Boric and other Latin American leaders, who have called for the release of political prisoners, were branded as “lapdogs” of the United States and the European Union.

And on Wednesday, Nicaragua declared the European Union ambassador, Bettina Muscheidt, “persona non grata” and gave her three days to leave the country. The decision was made after the EU delegation demanded freedom for Nicaragua’s political prisoners at the United Nations General Assembly last week.

“The EU profoundly regrets and rejects this unjustified and unilateral decision,” the European External Action Service (EEAS) said in a statement released on Sunday, a day after Muscheidt left Nicaragua. “The EU also profoundly regrets the disproportional and unjustified unilateral decision taken on Friday by the Nicaraguan government to cut diplomatic ties with the kingdom of the Netherlands and expresses its unwavering support to the Dutch government,” it added, warning that it would respond in a “firm and proportional manner.”

In recent months, Nicaragua has also rejected all proposals for dialogue, including those put forward by Pope Francis, Colombian President Gustavo Petro and the US government.

“Ortega’s strategy is to escalate the crisis to a point where only the use of force will solve it, but he knows very well that the use of force is not an option the international community is going to consider,” Eliseo Núñez, a former opposition deputy in Nicaragua, told EL PAÍS. “Everyone believed that they could push Ortega to the brink of the abyss, but he has taken the international community to that brink and is forcing it to choose between two options: a global economic blockade, which would collapse Nicaragua, or to sit back and wait to see what happens.”

Some analysts believe that Washington is seeking to exhaust all diplomatic routes with Nicaragua via Ambassador Rodriguez in order to justify future action against the country, such as expelling it from the DR-CAFTA free trade agreement.

“Ortega has been using vulgar, racist and blasphemous rhetoric,” Arturo McFields, Nicaragua’s former ambassador to the Organization of American States (OAS), told EL PAÍS. “It is a narrative that is aligned with Russia’s foreign policy. Right now, Russia is facing NATO, the United States and the European Union. Ortega is sticking in a parasitic way to the foreign policy of Moscow and China.”

McFields recalled that Nicaragua was one of the seven countries that did not want the president of Ukraine, Volodymyr Zelenskiy, to appear remotely at the United Nations General Assembly. “I believe that in the next few days, Ortega is going to break diplomatic relations with other countries in the European Union,” said McFields.

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Afghans left in legal limbo in Greece while ‘real refugees’ helped to settle | Migration and development

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It is 3.30pm and Suna Hamanawa, 25, is doing what she and dozens of other Afghan mothers do most days: whiling her time away on a park bench in Viktoria Square, a scruffy plaza in central Athens, as her children play around her. Like almost every other asylum seeker, she is relieved to be in Greece.

“We’re better here, we’re safer here even though me and my husband and our first little one [initially] spent 10 months in Moria,” she says, screwing up her face at the memory of the notoriously overcrowded and fire-ravaged refugee camp on Lesbos.

“But every day, in its own way, is a fresh hell. The Greek government does nothing. It just keeps saying ‘wait, wait, wait’. And that’s what we do all day, every day. Wait for our papers, wait for our travel documents. Wait for freedom.”

A year after Afghanistan’s fall to the Taliban, Greece continues to be the first port of call for thousands of people fleeing the country’s worsening humanitarian crisis. After Ukrainians, Afghans account for the second-largest group of asylum applicants in the EU and by far the biggest in Greece, where more than 37,000 – more than a third of the total number registered nationwide – have filed asylum claims.

Hamanawa, who arrived in Lesbos with her husband, Mohammed, in a dinghy from Turkey in 2018, waited four years to become one of the estimated 28,500 Afghans to secure refugee status – a protracted period of legal limbo that is vastly at odds with other refugees, not least those from Ukraine.

In a recent report, the International Rescue Committee (IRC) chronicled Afghan refugees’ difficulties in Greece and the serious impact on their physical and mental health.

Of the 192 Afghans monitored by the organisation’s mental health teams between April 2021 and March 2022, about 97% had reported symptoms of depression, while 50% had considered suicide, the IRC report said.

“Many Afghans fleeing conflict and persecution in their own country think their troubles will be over once they reach Europe … This is simply not the case,” says Dimitra Kalogeropoulou, the IRC’s Greece director.

“Instead, people face the stark reality of violent pushbacks from Greek borders, months or years living in fear of being sent back to Turkey or Afghanistan, where they could face untold horrors, extended periods trapped in prison-like reception conditions, far from towns and cities and an alarming lack of support to begin rebuilding their lives,” she says.

For the estimated 70,000 Ukrainians who have sought refuge in Greece, it has been a different story. After Russia’s invasion on 24 February, the EU moved quickly to issue a temporary protection directive to safeguard the rights of people desperate to leave the war-torn country.

Although relatively few Ukrainians have headed to Greece, the reception they have received there has been unusually warm, with senior officials often referring to the newcomers as “real refugees”.

It was vital, said the IRC report, that Afghans were also guaranteed access to full and fair asylum procedures and given “dignified” support with accommodation and integration.

“While the Greek government has welcomed refugees from Ukraine, by efficiently registering them, issuing legal documents and allowing immediate access to employment, Afghans in Greece, alongside other asylum seekers and refugees, continue to be isolated from the Greek society in which they seek to rebuild their lives,” the report’s authors wrote. “Even after receiving status, refugees have limited integration support.”

Afghan asylum seeker Khorshid Ahmadi and her daughter Leyla in Viktoria Square, Athens.
Khorshid Ahmadi, an Afghan refugee, and her daughter, Leyla, in Viktoria Square, Athens. Photograph: Helena Smith

The biggest barrier for Afghans claiming asylum is the Greek government’s controversial decision to label Turkey a “safe third country” for people not only from Afghanistan but also from Bangladesh, Pakistan, Somalia and Syria. The decision has prevented thousands of people from being able to explain why they need international protection.

“We’ve been here for four years,” says Khorshid Ahmadi, 26, as she plays with her children in Viktoria Square. “My family’s request for asylum has been rejected three times. They keep saying we should return to Turkey, even if Turkey doesn’t take anyone back from Greece.”

As a result, she says, neither she, her husband nor their five children have legal status or any right to housing or cash assistance.

Greece’s centre-right government insists it pursues a “tough but fair” migration and asylum policy. Accusations of pushbacks – despite overwhelming evidence – have been strongly denied. But keeping asylum seekers at bay remains a priority. In September, the migration minister, Notis Mitarachi, noted that the country had blocked about 50,000 migrants from entering Greece in August alone.

Amid renewed tensions with Turkey, the public order minister in Athens claimed last month that every night about 1,500 people gathered at the land border with Turkey were attempting to cross as a result of Ankara’s policy to “weaponise” migration and push asylum seekers into Greek territory.

As one of Europe’s most southerly states, Greece was the main entry point for more than 800,000 Syrians when the refugee crisis first engulfed the continent in 2015. After the adoption of a controversial pact aimed at stemming flows between the EU and Turkey in March 2016, the influx dropped steeply.

As patrols have been reinforced, with the help of the EU’s border agency Frontex, the number has fallen further in recent years, particularly arrivals on the north Aegean islands facing the Turkish coast, where most asylum seekers at the height of the crisis were located. The decline prompted the Greek prime minister, Kyriakos Mitsotakis, to boast last week that smuggling networks had been largely cracked.

International bodies have echoed the IRC in rebuking Athens for resorting to tactics of brute force to keep asylum seekers out.

Concluding a 10-day fact-finding tour of Greece in June, Mary Lawlor, the UN special rapporteur for human rights defenders, accused the Mitsotakis government of creating a “climate of fear”, not only for refugees and asylum seekers fleeing poverty and persecution but also for groups defending migrants’ rights on the ground. Illegal evictions of asylum seekers at land and sea borders had become a general policy in Greece, she said.

Last week, Mitarachi insisted the government would continue to replace open-air camps on frontline islands, such as Lesbos, with barbed-wire encircled “closed controlled” access centres, and would push ahead with plans to extend a border fence along the Evros land frontier with Turkey.

Mohamad Mirzay, Greece’s Afghan community spokesperson, who arrived in the country in 2006 at the age of 14, says: “Every day, we hear from families back home of Afghans being lost at the border.

“One of our biggest problems is that a lot of young Afghans whose asylum claims are rejected get into drugs, a problem we are now trying to address as a community. It’s all so very hard. Very few want to stay here, they don’t want to endanger their future. For sure, you could say, Ukrainians get very different treatment.”

Sofia Kouvelaki, who heads the Home project, an NGO that supports unaccompanied minors, said: “Ukrainian refugees have proved a point. In Greece, and in the EU, they have shown that if we want to integrate we can, and if we want to welcome people with a human face we can do that too.”

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Opposition Party of Bulgaria’s Ex-Prime Minister Borisov Leading in Parliamentary Vote

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MOSCOW (Sputnik) – Opposition party Citizens for European Development of Bulgaria (GERB), chaired by former Prime Minister Boyko Borisov, is coming ahead in the snap parliamentary elections, Bulgaria’s Central Election Commission said after processing over 51% of the ballots.

The GERB and Union of Democratic Forces coalition currently has 25.64% of the votes, while the centrist We Continue the Change (PP) party, co-led by former Prime Minister Kiril Petkov, is second with 20.87%.

In June, the Bulgarian parliament cast a vote of no-confidence in the coalition government and the cabinet led by Prime Minister Petkov was forced to resign. Attempts to form a new government failed.

Bulgaria held three snap parliamentary elections last year, as no party was able to form a government. In November 2021, lawmakers finally formed a four-party coalition between PP, the Bulgarian Socialist Party, There Is Such a People (ITN), and Democratic Bulgaria, ending a month-long government crisis. The elections saw an all-time low turnout of less than 40%.



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