Moscow opposition councilor Alexei Gorinov has just spent his 61st birthday in jail. His crime? To criticize the organization of an event for Children’s Day in light of the war in Ukraine.
“How we can be discussing a children’s drawing contest for Children’s Day when children are being killed every day?” he said at a filmed council meeting. “I can tell you that 100 minors have died in Ukraine, and other children have been orphaned. These are the grandchildren and great-grandchildren of those who participated in World War II.” This outspoken opinion on the war in March has led Gorinov to be sentenced this month to seven years behind bars.
Just days prior to the meeting held in Moscow’s Krasnoselsky district on March 17, a law had been passed stipulating prison sentences for any Russian “discrediting the Armed Forces” or “knowingly spreading false information.” This law was promptly used against several of the seven politicians who took part in that particular council meeting, all of whom are well-known political figures in Moscow: Gorinov is the first to be jailed under the new law; Elena Kotionochkina, the incumbent president, has fled the country but has a warrant out for her arrest; and opposition activist Ilia Yashin was taken into custody a week ago on account of a video he posted on his YouTube channel concerning the Bucha massacre last March in which 1,300 Ukrainian civilians were slaughtered, and is now looking at years behind bars. Only one councilwoman voted in favor of the children’s contest.
You hear about fines and charges being brought against more or less famous people, but there are also a significant number of lesser-known individuals who are being reported
Nikolai Rybakov, leader of independent party Yabloko
Gorinov was sentenced under Article 207.3 of the Russian Criminal Code, adopted on March 4 which allows for prison sentences of up to 15 years. According to the judge’s 26-page ruling, Gorinov and his colleague Kotionochkina, had misled Russians, triggering “anxiety and fear” about the “special military operation” in Ukraine, a crime driven by “political hatred, disdain, antipathy and aggressiveness towards the organs of power of the Russian Federation.”
The prosecution brought various pieces of evidence against Gorinov during the trial at the Meschhanski district court, including Defense Ministry war logs that defined the Russian action in Ukraine as a special military operation “and did not mention the death of children”; an article published by Foreign Ministry spokeswoman Maria Zakharova entitled The Special Operation Is Not the Start of a War, But its Prevention; and the agreements signed by Russian leader Vladimir Putin and the self-proclaimed Donetsk and Lugansk People’s Republics in Eastern Ukraine.
On March 17, while the Moscow district was discussing the children’s contest, the UN Human Rights Commission – of which Russia itself is a member – reported that at least 22 teenagers and 36 children had been killed during the offensive in Ukraine, “though the actual numbers are significantly higher.”
The video, which is still available on YouTube, shows Kotionochkina suggesting that her country is on its way to becoming “a fascist state” and proposing the modification of the contest along the lines of “children against the war in Ukraine.”
Gorinov can be seen adding, “I believe all efforts of [Russian] civil society should be aimed only at stopping the war and withdrawing Russian troops from the territory of Ukraine.” Their stance was met with the following response from the one district councilwoman to vote in favor of holding the contest in its original form: “You are obsessed!”
Following Gorinov’s conviction, more than two dozen well-known Russian lawyers and human rights activists published an open letter accusing the new post-invasion law of violating the Constitution. Specifically, they alleged that it fails to recognize ideological and political diversity as the basis of Russia’s constitutional order, according to article 13 of the Basic Law; the freedom to hold and share one’s own convictions – article 28; freedom of thought and speech – article 29; and the prohibition of arbitrary criminal prosecution – article 54.
“You can’t sentence a politician to jail for declaring his position at a meeting,” states Nikolai Rybakov, the leader of Yabloko, one of the few surviving independent parties in Russia, which is calling for the war in Ukraine to stop. “We are trying to continue to bring pressure to bear while we still can, but it’s not easy,” he tells EL PAÍS. “They were killing politicians representing Yabloko for political and human rights activities in the 1990s, including under Boris Yeltsin’s government. This is not new, it’s just the logical continuation of everything that has happened so far.”
Under the new law, speaking out is dangerous. Independent media such as Novaya Gazeta have had to delete editorials that use the term “war” for what Putin has insisted on referring to as a “special military operation.” Meanwhile, there have been several high-profile cases of whistleblowing. In April, a teacher at a school in Penza, in the center of European Russia, was reported to the police by two students who had secretly filmed her blaming her country when asked why Russian athletes could not compete in Europe.
That same month, Dmitry Bayev, a priest from a small Russian town, fled the country after being arrested and charged for demanding an end to the conflict and for Putin to be brought before an international court. Bayev managed to escape, but another St. Petersburg cleric, Ioann Kurmoyarov, was not so lucky. He has been held in custody since June 7 and could face a prison term for a YouTube video of himself pronouncing that “those who unleashed this conflict will not go to heaven” and “if you are not bothered by what is happening in Ukraine, you are not Christian.”
“You hear about fines and charges being brought against more or less famous people, but there are also a significant number of lesser-known individuals who are being reported,” says the Yabloko leader, Rybakov, who observes that “people are turning to the authorities and accusing others and it is not known what is happening to them.”
The protests at the beginning of the offensive have been largely silenced due to the crackdown under the new legislation. The OVD Info portal, which specializes in monitoring protests, has confirmed 16,380 arrests since February. For its part, towards the end of June, the independent polling center Levada found that barely 55% of Russians follow news on Ukraine, and a large proportion of those who do are elderly.
The outlawing of demonstrations is said to be a measure to prevent the spread of the coronavirus, despite the fact that the authorities hold mass propaganda events, claiming they are private “festive, sporting or tribute” events, according to Rybakov, who adds that due to the number of arrests already made, “we will only call demonstrations if we know it’s safe.”
In order to tighten the crackdown, Putin passed another piece of legislation regarding foreign support on July 14. Now the Kremlin will not only be able to outlaw organizations or activists receiving funding from outside the country, but also those it considers to be “under foreign influence,” from journalists to NGOs and political parties – anyone and anything that does not support Putin’s Russia. The already extensive blacklist of foreign agents was expanded further last week, a move that prompted actress Tatiana Lazareva to write on Telegram that she felt “finally relaxed” about being part of the club of critics recognized by the Kremlin.
Rwanda Gov’t Accused of Using Torture, Killings as ‘Accepted Methods’ of Control: Report
Rwanda Gov’t Accused of Using Torture, Killings as ‘Accepted Methods’ of Control: Report
Rwanda Gov’t Accused of Using Torture, Killings as ‘Accepted Methods’ of Control: Report
In April, the UK clinched a deal with Rwanda that stipulates illegal migrants arriving in Britain via the English Channel will be sent to the East African… 17.08.2022, Sputnik International
An unnamed Foreign Office official has accused Rwanda’s government of resorting to “arbitrary detention, torture and even killings” as “accepted methods of enforcing control,” in light of Britain’s upcoming High Court review of the legality of the London-Kigali deal to send some asylum seekers to the East African nation.The official also claimed that “There are state control, security, surveillance structures from the national level down to [households]” in Rwanda, according to The Guardian.This comes as the UK government is seeking to keep parts of the documents secret for fear the contents could damage international relations and threaten national security. In particular, No 10’s application for a public interest immunity (PII) certificate calls for keeping “10 short passages confidential.”The Guardian, along with the BBC and The Times, urges the disclosure of all 10 passages, insisting that it is in the public interest, a view supported by the PCS union, as well as the charities Care4Calais and Detention Action.A draft ruling from Lord Justice Lewis on the PII application is expected tomorrow, while a full High Court hearing into the London-Kigali deal on asylum seekers is scheduled for September 5.Rwanda DealThe London-Kigali asylum pact, which was inked by Home Secretary Priti Patel and Rwandan Minister of Foreign Affairs and International Cooperation Vincent Biruta on April 14, 2022, stipulates that adult migrants who illegally arrived in the UK seeking sanctuary since January would be given a one-way ticket for the 4,000-mile (6,400-km) trip to the East African nation for processing and resettlement.Under the deal, those relocated to Rwanda will receive “support, including up to five years of education, vocational and skills training, as well as integration, accommodation, and healthcare, so that they can resettle and thrive.”The outgoing UK prime minister’s government described the Rwanda scheme as a legitimate way to protect lives and thwart the criminal gangs that send migrants on risky journeys across the English Channel.The implementation of the deal is currently on standby after a last-ditch order by the European Court of Human Rights (ECHR) led to the cancellation of the UK’s first flight to take asylum seekers to Rwanda in mid-June. Home Secretary Priti Patel made it clear that the ECHR’s move would not prevent London from going ahead with its plans to send some illegal migrants to the East African nation.
uk, rwanda, migrants, deal, torture, government
uk, rwanda, migrants, deal, torture, government
In April, the UK clinched a deal with Rwanda that stipulates illegal migrants arriving in Britain via the English Channel will be sent to the East African nation, where their asylum claims will be processed.
An unnamed Foreign Office official has accused Rwanda’s government of resorting to “arbitrary detention, torture and even killings” as “accepted methods of enforcing control,” in light of Britain’s upcoming High Court review of the legality of the London-Kigali deal to send some asylum seekers to the East African nation.
The official also claimed that “There are state control, security, surveillance structures from the national level down to [households]” in Rwanda, according to The Guardian.
This comes as the UK government is seeking to keep parts of the documents secret for fear the contents could damage international relations and threaten national security. In particular, No 10’s application for a public interest immunity (PII) certificate calls for keeping “10 short passages confidential.”
The Guardian, along with the BBC and The Times, urges the disclosure of all 10 passages, insisting that it is in the public interest, a view supported by the PCS union, as well as the charities Care4Calais and Detention Action.
A government spokesperson, in turn, praised Rwanda as “a safe and secure country with a track record of supporting asylum seekers.” They underscored that the government remains “committed to delivering this policy to break the business model of criminal gangs and save lives.”
A draft ruling from Lord Justice Lewis on the PII application is expected tomorrow, while a full High Court hearing into the London-Kigali deal on asylum seekers is scheduled for September 5.
The London-Kigali asylum pact, which was inked by Home Secretary Priti Patel and Rwandan Minister of Foreign Affairs and International Cooperation Vincent Biruta on April 14, 2022, stipulates that adult migrants who illegally arrived in the UK seeking sanctuary since January would be given a one-way ticket for the 4,000-mile (6,400-km) trip to the East African nation for processing and resettlement.
Under the deal, those relocated to Rwanda will receive “support, including up to five years of education, vocational and skills training, as well as integration, accommodation, and healthcare, so that they can resettle and thrive.”
The outgoing UK prime minister’s government described the Rwanda scheme as a legitimate way to protect lives and thwart the criminal gangs that send migrants on risky journeys across the English Channel.
The implementation of the deal is currently on standby after a last-ditch order by the European Court of Human Rights (ECHR) led to the cancellation of the UK’s first flight to take asylum seekers to Rwanda in mid-June. Home Secretary Priti Patel made it clear that the ECHR’s move would not prevent London from going ahead with its plans to send some illegal migrants to the East African nation.
Global instability: Global plagues bring to its knees a world unable to face them together | International
A brutal pandemic; frightening climate change; a devastating war that drives widespread rearmament; severe trade disruptions; gigantic multinationals that take advantage of loopholes to avoid paying much-needed taxes. The world faces colossal global challenges that shake it intensely and whose solutions necessarily pass through close international cooperation. As the Secretary General of the United Nations, António Guterres, stated at the end of July, with respect to global warming, the dilemma is clear: collective action or collective suicide. However, signs of growing polarization and rift abound, between the West and the authoritarian giants of the East, or between the North and the South of the planet. Against the backdrop of the great geopolitical fracture caused by the Russian invasion of Ukraine, the current situation throws up an unequivocal sequence of alarm signals of different kinds.
The meeting on climate change held in Bonn in mid-June to prepare the COP27 in November in Egypt ended without progress and with acrimony; The Organization for Economic Cooperation and Development (OECD) reported in mid-July that the negotiation it leads to implement a global tax framework for multinationals is delayed and it will not be possible to apply it before 2024 in the best of cases; at the end of July Russia announced that it is withdrawing from the international space station project; the review conference of the Nuclear Non-Proliferation Treaty (NPT) that has begun in New York takes place in the midst of strong geopolitical turmoil that does not induce the greatest optimism; In early August, China announced the breaking off of dialogue with the United States on key issues such as the environment or high-level military meetings in response to House Speaker Nancy Pelosi’s visit to Taiwan.
Not all are disasters. The ministerial meeting of the World Trade Organization (WTO) held in July achieved a consensus statement that, although minimal, represents an important sign of vitality for a badly wounded international institution. A recent deal to allow Ukraine to export grain has begun to bear fruit. The US has approved an important piece of legislation that contemplates investments of more than 300,000 million euros over a decade to facilitate the green transition, a national episode but with great global repercussion. There are inspiring episodes of transnational cooperation, such as the EU anti-pandemic crisis funds.
But the achievements seem insufficient given the magnitude of the crises, and the underlying currents are not at all promising for the near future in the fundamental field of truly global cooperation, apart from national, bilateral or regional initiatives. The stark rivalry between powers hinders the essential constructive attitudes; the economic slowdown encourages selfish instincts; The specter of a new rise of nationalist and protectionist recipes is serious, whether it materializes in the extreme form of a seizure of power —as is likely to happen in September in Italy— or in the inhibiting effect that this strength has on the rulers of another country. political inspiration.
Below is a review of the state of the art in some of the key areas in which global responses to global problems would be necessary – and where, however, more friction than solution is in sight.
The war launched by Russia in Ukraine has highlighted, in addition to the impotence of the UN system in cases like this, the seriousness of the collapse of the security architecture that had been built during the Cold War, an important framework of treaties of gun control that set limits, increased transparency, decreased the risk of dangerous misunderstandings. The collapse began two decades ago. In 2002, the United States withdrew from the Anti-Ballistic Missile Treaty and more recently withdrew from the Intermediate-Range Nuclear Forces Treaty and the Open Skies Treaty for a wide range of reasons, while Russia took the lead in withdrawing from the Armed Forces Treaty. conventional in Europe.
This gap is especially serious in a context like the current one, with a clear arms race. World military spending is increasing and, for the first time in decades, according to SIPRI (Stockholm International Peace Research Institute), nuclear arsenals are on the way to not only a qualitative improvement, but also a quantitative one. “We have to be aware that the lack of dialogue on nuclear risks and arms control between powers is in itself dangerous, because it makes it easier to misunderstand and miscalculate in a crisis,” says Daryl G. Kimball, executive director of the Washington-based Gun Control Association.
This dangerous trend has been seriously accentuated by the recent breakdown in dialogue between Beijing and Washington. If the conflictive relationship between the West and Russia is worrying given the high military potential at the Kremlin’s disposal, the deterioration with China is even more so. The Asian giant will most likely be a 21st century hyperpower. He is determined to develop war-fighting capabilities commensurate with that status and is traditionally reluctant to engage in arms-control deals in the style of those that helped keep the Cold War from turning hot.
“Unlimited spending on increasingly sophisticated military equipment only fuels an arms race that no one can ultimately win. We need to get back to a point where the major powers are engaged in a constant and fruitful dialogue,” Kimball continues. “With Russia the relationship is broken, and as for China, Washington should recognize that its actions can have a negative influence and Beijing should understand that the US has concerns about its behavior.”
The current NPT review conference in New York is a perfect compendium of the difficulties that complicate the road in this sector. The nuclear powers recognized by the Treaty are in the midst of massive efforts to modernize their arsenals. Russia and North Korea make thinly veiled threats to use it. Iran is leaps and bounds closer to having the capabilities to have a nuclear weapon if it wanted to. Dozens of countries, meanwhile, have ratified the Treaty for the Prohibition of Nuclear Weapons. But both the dialogue between nuclear powers and that between them and the abolitionists seem very complex. A final consensus statement from the conference looms as virtually impossible. The hope is that at least a declaration backed by a “supermajority,” as Kimball defines it, will come about. This, however, is “possible, but not likely,” acknowledges the expert.
Nor does it seem likely that the world will make coordinated and consistent progress in the fight against climate change in the near future. While the brutal heat waves that hit Europe ―with terrible droughts and fires that devastate the territory― remind us of the urgency of speeding up the task of reducing greenhouse gas emissions, multiple dark elements accumulate on the table .
Political action in the US to facilitate the green transition is extremely important and will increase the pace of US emission reductions. However, as important as it is, the package is not even enough, according to expert calculations, to meet the 2030 emission reduction goals assumed by the Joe Biden Administration. Meanwhile, disruptions in the energy market linked to Russia’s war in Ukraine have precipitated a return to coal in several European countries. China, for its part, has increased the pace of permitting the construction of new coal plants very consistently, according to a Greenpeace report. In the first quarter of 2022, plants for a power of 8.6 gigawatts were authorized, almost half of the capacity approved throughout 2021, when Xi Jinping gave a boost to strongly advance decarbonization. The breakdown of cooperation between Washington and Beijing in this section is a huge blow, as they are the two main emitters.
“We live in a very complex context, of concatenated crises that interact. In this context, energy security is emerging as the preponderant variable over the others. Short-term signals are undesirable. And, in the general picture, the commitments made to reduce emissions are clearly insufficient. Even so, we are much better off than a decade ago thanks to the legislative and executive framework that has been built to tackle the energy transition”, observes Lara Lázaro, principal investigator at the Elcano Royal Institute and an expert in the field.
The difficulties in international cooperation in this sector and at this time were exposed at the meeting held in Bonn in mid-June to prepare the COP27 scheduled for November in Egypt, which ended without tangible progress. If, on the one hand, the need for energy security drives polluting bets in the short term, and the economic slowdown stirs up East-West competition, the Bonn meeting illustrated, on the other hand, the validity of the pulse between the North and the South , with the latter accusing the former of not fully assuming its responsibility for the damage caused to all as a great historical polluter. The issue of mobilizing aid to developing countries to deal with this impact is an open wound.
The decision of the G-7 held in Germany at the end of June to accept exceptions to the commitment to avoid public investment in the fossil fuel sector caused much concern among the supporters of a decisive acceleration in the fight against climate change. The taxonomy recently approved by the EU, according to which gas is cataloged in a green label that favors investments, also caused controversy.
“At COP26 in Glasgow, among other things, it was proposed to reach COP27 with revised objectives. But I see it unlikely that Europe will get there with greater goals. Perhaps more closed implementation plans. Nor do I see the US or China arrive with increased objectives. Egypt will hold the presidency in a devilish context”, comments Lázaro.
Contributing to the devilish context is a pandemic that has prostrated the planet for two and a half years. The situation is clearly better than in the previous summer thanks to the deployment of the vaccines, but the emergency cannot be considered resolved nor, above all, the way of dealing with it shows the desirable signs of an effective international cooperative attitude.
The WHO (World Health Organization) continues to record around 15,000 weekly deaths from covid this summer, and the disruptions to the economy due to confinements, as China shows, are consistent. At this point, Africa still has a proportion of citizens with full guideline of only 20%. The north-south gap and west-east distrust mark this scenario.
“The international reports that have been prepared – such as that of the Monti commission, to which I was linked – coincide in indicating that the north-south international response has been clearly insufficient and not very supportive”, comments Rafa Bengoa, former Minister of Health of the Government Vasco, former director of the WHO health systems area and currently co-director of the Institute of Health and Strategy.
“Many countries, including Spain, are trying to provide both vaccines and medicines and infrastructure to the countries of the south, but this has been slow, it is not going at the speed at which the virus is going. We are playing more to the security of the north than to the solidarity that we should have, “says the expert.
The most visible combat scenario has been that of the release of intellectual property from vaccine patents. India and South Africa have spearheaded the claim. After a time of uncertainty, the Biden Administration backed the idea. But the issue remains stalled, opposed by several major European producing countries. The recent WTO ministerial conference has addressed the issue in its final consensus statement. However, the result has been considered practically irrelevant by supporters of liberalization and by independent experts. “It doesn’t change things much,” says Uri Dadush, an analyst at the Bruegel think tank, and a former World Bank executive and president of The Economist Intelligence Unit.
In this context, hopes for better international cooperation are pinned on a process launched within the framework of the WHO to outline a new legal framework. “The idea is to have a legal and binding mechanism that goes much further than the international health regulations of 2005, which were established after SARS-1, and which have proven to be insufficient due to lack of teeth,” observes Bengoa.
The expert points out how the WHO faced serious problems in investigating what happened in Wuhan, China, the likely epicenter of the pandemic, because it does not have the power to act without authorization from member countries. “The framework agreement is going to have to say things about these issues.” Once again, the growing mistrust between powers embodied in a traumatic way by the breakdown of the dialogue between Washington and Beijing is emerging as a potential obstacle to endow an international institution with penetrating powers. It should be remembered that Donald Trump, a possible candidate for the next US presidential elections, promoted the withdrawal of his country from the WHO.
Trade is another area subject to strong tensions for geopolitical reasons or because of the disruptions linked to the pandemic. Precisely under the Trump presidency, the conflict between the US and China fully broke out, in which the arrival of Biden has meant a certain containment, but not a solution. The highest arbitration panel of the WTO for disputes between States is inoperative as the necessary judges have not been appointed, with the United States convinced that the court exceeded its powers in the past. The relationship between the other great world trade giant, the EU, and China is not serene either. The sinking of the investment agreement between the two, once heavily sponsored by Germany, is a symbol of growing suspicion in Europe about Chinese attitudes and excessive interweaving with that market. The Russian war in Ukraine has, of course, been shaken up again, with a wide range of retaliatory sanctions against Russia by some 40 democratic countries.
Still, the recent WTO ministerial conference concluded with a consensus agreement. “This is positive. The WTO is a fundamental institution, and many other ministerial ones ended up without it,” says Dadush, who, however, points out that the agreements found are of a “minimalist” nature, and that the declared intention to reactivate the arbitration panel by 2024 “It doesn’t really commit anyone.”
Dadush points out that the current turmoil — tariff conflict between the US and China, sanctions on Russia or the UK’s exit from the EU — while significant, nevertheless represents “a small part of global trade.” The expert believes that the most likely future scenario is that of “free trade that will go ahead, a globalization that will continue, with many difficulties and tensions, but without a global trade war.”
The hypothesis of an open war between China and the United States is the only circumstance that can profoundly alter this central perspective, Dadush observes. “But I think that everyone is aware that we cannot afford an open war between Washington and Beijing, that it is necessary to find a modus vivendi, and that is why that is not the most likely scenario,” Dadush continues.
“I also believe that”, he continues, “even if nationalist and protectionist options come to power in Western countries, they will also be limited, in the transition from campaign rhetoric to government action, by the reality that trade is essential. for economic development and pressure from business environments that are often close to right-wing political families. Therefore, I believe that the most realistic scenario is that of free trade that, although with difficulties, will go ahead”. In this sense, it should be noted that the right-wing coalition dominated by protectionist parties that is the favorite to win the elections in Italy issued this week supposedly reassuring signals in the face of the European integration process, in which free trade is a central issue. It will be necessary to see, in case of victory, how much the facts will correspond to the words of now.
Another blow to the hopes of finding global solutions to global problems came this July when it was confirmed that the negotiations to implement a global corporate tax system are facing many difficulties and will not be able to conclude this year as many expected. Last year, 140 countries agreed to establish a framework that allows taxes to be collected more fairly from large multinationals that take advantage of their size, the characteristics of their business and jurisdictions with negligible tax levels to avoid paying taxes on their profits. The agreement provides for a minimum corporate tax of 15% and that at least part of the profits of multinationals be registered in the jurisdictions where their clients are, and not where their headquarters are, conveniently located.
But the application in the real world is complex, and the OECD, which is leading the negotiation, has reported that at least one more year will be necessary and the implementation would not be possible before 2024. The legislative package approved this Friday in the US contemplates various tax measures but, as recognized by the Treasury Department itself, promoter of the global agreement, they do not serve to place the country in line with the framework agreed upon in the OECD.
As if the obstacles to global cooperation in all these sections were not already notable, others are on the way, such as the US legislative elections in November, which could break Democratic control of Congress. It is to be hoped that, with the Republicans in control of one or both Houses, Washington’s willingness to cooperate internationally will be diminished, giving yet another turn to a spiral that goes in the opposite direction to the direction required by the plagues that afflict the world.
Silence, stigma and unaffordable drugs: the Kenyan woman finding sickle cell solutions | Global development
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.
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.
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.”
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.
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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